A young woman my age has a 1 in 700 chance of having a baby with Down syndrome. While that fact may be interpreted as “not very likely,” I have been reminded the last several months that there is a more relatable statistic that unites us all. It is simple: we all have challenges and therefore, we all experience opportunities to make the best of what we can’t control.
Since Bloom has been published, so many of you have written and shared how you related to the emotions in the book. Many of you have shared your stories that are different from ours but similar in the fact that you too experienced the unexpected. And through all of this, I’ve found that the phrase “we are more alike than different” applies to far more than just chromosomes. Together, we face adversity—the loss of jobs, divorce, sickness, learning new things about our children or friends or families. We relate in that we have shared hopes for the future. We love our children. We crave the support of friends. And most important, we are capable of moving forward, learning more about ourselves through challenges and becoming more compassionate in the process.
I’ve asked one reader in particular if I could share her story. Her post was sent to me the day after Bloom was published, and I was moved by both her vulnerability and courage. After battling hair loss, Sandra wholeheartedly embraced a new discovered beauty and shaved her head. As she wrote, “(I’m) ready to be me. Ready to not conform to the world’s standards of who I should be, or what I should be ashamed of. I get to search for and discover a deeper beauty that I wouldn’t have had the chance to find had I never experienced this.”
(Read the rest of Sandy’s story HERE).
I’d love to hear more of your stories. This week, I’m introducing We Bloom, an opportunity for you to share your own story that reflects the themes in Bloom. Have you found beauty in the unexpected? Has life taken you on a different path than you envisioned? What have you learned from it?
Reader Wendy N rockin’ out some Bloom in Seattle, WA
In 300 words or less, please share your story in the comment section of this post. Four entries will be selected and published in a special Mother’s Day post this weekend (with appropriate links to your blog if you have one) and will receive a personalized signed copy of Bloom: Finding Beauty in the Unexpected. Please sign your entry as you’d like to be credited.
I look forward to reading your stories.
Please note: By submitting your story in the comments, you are permitting me to credit you and publish your story on Enjoying the Small Things.
More from our camping weekend later this week.
This comment has been removed by the author.
First comment? No way. I’ll come back and post in a minute. 🙂
My story is a little crazy. I was told at age 19 due to an eating disorder I most likely will never have kids. At 30 I got my act together and went into university for a nursing degree. At the end of my second year I found myself pregnant (was on birth control pill to control periods). At 15 weeks they heard 2 heartbeats, at 17 weeks ultrasound found 3 little babies and I lost one at 9 weeks. They were born at 29weeks (11 weeks premature) Birth weights were a:1lb 15oz, b: 2lb 9 oz, c:2lb 15oz. After one month on bedrest, 2+mths in the NICU we came home. They are a crazy healthy 4.5 years old and starting school in Sept. We’ve over come a lot but I fear the battle has just begin when they are teens. 😀 For someone who was never supposed to have children I’ve been blessed with a half of a nursing degree and a whole life full of 3X the hugs, kisses and love. Like you, sometimes the biggest surprises have the most profound results.
This post is amazing, Sandy really is a true inspiration.
picture this.
by jen proano
i have a daughter with special needs. and i wish that you could see her like i do.
yes, there have been hard times… sometimes altogether too frequently. there have been times when i’m so frustrated with her… with me… with life in general… that the only thing that i know how to do is just cry and hold her and pray for wisdom. there have been really horribly awful times, when i am mad at myself for things that run through my head, for the wishes that i wish, for when the “if only’s” start to flow. there are low, hard times.
but there are great times, too. and i’ve been priveleged to get to live the great times in slow motion. when other kids are eating and running and jumping and doing typical four year old things… and meg isn’t… i get to enjoy them that much more when they happen. with my son, he developed by the book, hitting milestones in the allotted timeframe, and adapting easily to any and all situations. he made parenting pretty easy. but meg, well, she’s a different story. milestones have been a struggle from the beginning… her not hitting them after weeks, and then months and now years. you’re probably wondering where the “great times” come in, huh?
if you know meg at all, then you know a little about what i mean. the girl, although unable to feed herself or communicate her wants and needs in an effective way, is PURE JOY. her laugh is infectious… it comes from deep within and penetrates everything and everyone around her. the girl loves life. i mean really, she loves it. she enjoys every moment, hardly ever seen without a smile on her face. she can’t run the fastest, but when you’re chasing her, she wouldn’t want to be the fastest runner… she wants to be caught. she can’t tell you that she loves you in words, but you’ll feel it. you’ll know it when she hugs you around your neck and squeezes with all her might. you’ll feel it.
the girl is total joy. sometimes, i wonder why i was chosen to be her mother… how in the world i got so lucky.
this is why i love our camera. i want to… somehow, some way… show you her joy. have you feel it. the girl changes you… she has changed me. when she flashes me a smile, or laughs that gorgeous laugh, i want to catch that moment, that glimmer… and preserve it for you to see. when she throws her head back when i cradle her in my arms and squeals in delight, i want to keep that moment and preserve it forever. for some reason, i am the mom that got lucky enough to experience her delight firsthand. and i wish that i could do it justice on film.
yes, i have a daughter with special needs. and i wish that you could see her like i do.
Great idea, will look forward to reading them x
Great post, and I want a top that says dance yourself silly too!
Hi, first time commenter, but avid follower :). I wanted to share my story with you…
My first baby was due on March 30, 1999, my husband and I were thrilled our first baby would be a girl and the pregnancy was going along perfectly. On January 25 I mentioned to a girlfriend that I had not felt Rylie move for about a day. As this was my first baby, I wasn’t all that concerned. She told me I ought to call my doctor, but I had this irrational fear of being seen as “the paranoid 1st time pregnant girl” so I hesitated. I finished by work day and called the doctor once I got home. They asked me to go to the hospital immediately. I must have been in denial, because I still had no sense of what I was walking into.
Once the settled me into a bed and put the Doppler on my belly I heard a faint, but persistent heartbeat. I smiled and said, “Oh, there she is.” The nurse replied quietly, “No honey, that’s you.” That was my first indication something was wrong. The doctor on call came in to perform an Ultrasound and she told me how sorry she was, but there was no heartbeat. I remember screaming no at the top of my lungs, the nurse rushing to close the door and the doctor just sitting there with her hand on my leg. It was explained to me that I had two choices, one was to go home and let my body go into labor on its own, or two, I could have my labor induced immediately. I chose to be induced at that time. At 25 years old, I had led a charmed life, nothing could have prepared me for the pain I would feel. The doctor who came on for the RN who came on for the morning shift walked in and said to me, “I dreamed last night that I would be taking care of a couple who lost their baby, I’m supposed to be here for you today.” I was so grateful for her kind words. They warned me about how quiet the delivery room would be, they encouraged me to hold the baby after I had her and take pictures.
Once she was delivered 24 hours later, my husband and I held and cried more than we knew we could. My friends and family gave me time to grieve, feel sorry for myself and be angry at the world and when I was ready to stop that, they were still there. I learned so much from going through that experience so young. Once I had my family complete with 2 healthy kiddos, I have been able to feel that my 1st baby, my Rylie, gave me a gift on that day she was born. The lesson that even the most indescribable pain can give way to absolute joy.
Thank you, Kelle, for letting me share my story and continually reminding me that happiness is a choice make. Every single day.
Sandra’s story is beautiful!
Love Nella’s “dance yourself silly” shirt and dig’s skirt.=)
Love,
Jill B (Overland Park, KS)
My story lies within the almond shaped eyes of a 6 lb 15 oz baby girl. Born 20 days early, she was not the little girl I expected but she stole my heart anyway. On a hot humid night in early August I went to bed feeling very tired and very pregnant. We were finally expecting our second child after 6 years of waiting for the “right time,” to have another.
We arrived at the hospital that night when I realized I was in labor where I would try to VBAC, but was not successful. After several attempts at a spinal and epidural, I had to be put to sleep, which was so disappointing. I was just so happy to finally be meeting my perfect little girl, I didn’t really care how they took her out, as long as she was okay.
What happened next, I was not prepared for or maybe I was; I always had this nagging feeling throughout the pregnancy that something was different or not quite right, but hearing it said to you outloud just confirms it and makes it all too real. I will never forget the words the doctor said to me as I awakened from the surgery. “They are testing your daughter for Down Syndrome, she had a few of the characteristics.” I felt like someone had punched me in the stomach, what did this mean, where was my baby, when could I see her, was she okay? I felt like I had just woke up from a coma, everything was so fuzzy, and unclear but I understood what she had said like she hit me in the head with it.
After waiting, they finally brought her to me and I felt her warm body in my arms and saw those beautiful almond shaped eyes looking up at me. I was hooked, she was the most beautiful baby girl I had ever seen. I just loved her and knew we would get through whatever this Down Syndrome had to throw at us.
What followed was also nothing what I expected, family members didn’t react the way I thought, I needed someone to hug me, to wipe my tears, to tell me everything was going to be okay. It did happen, people were there for me that I never expected to be there, it was the people I thought would be there who weren’t that was so heartbreaking and disappointing. That night we learned that our little girl had a hole in her heart and would need surgery to repair it in the coming months. I was unsure that I would be unable to handle this and felt so sad, so alone, so angry, why my little girl, I wanted her so much, planned for her, did everything right, why oh why God was this happening? I wanted to take her from that hospital and run away, run far away, where there would be no doctors, no nurses, no needles, no tests, just her mother’s love, that was all we needed.
Love, such a strange word, but it’s meaning beat within my heart, my soul, my whole being, the love I felt for this little girl was so intense, so wonderful that I needed her, needed her to be around for a long long time, so in order for that to happen she has to have surgery, so it’s off to weekly cardiologist appointments and pediatricians, EKG’s, blood test all in the name of love.
So my little girl was certainly not what I expected when I arrived at the hospital that night, but she has become so much more to me and has taught me how to love and cherish.I am slowly learning to enjoy each day as it comes. She is my little girl, Down Syndrome or not, I will love her and give her a wonderful life.
Elizabeth Bobb
http://myhandsandheartarefull.blogspot.com/
Oops, kind of embarrassed at all my typos, but I was free styling…. Thanks again for the permission to share. 🙂
After a positive pregnancy test and telling the families, we found out we were not pregnant. Medicine was given to begin a cycle that never came. Tests were performed that didn’t matter because the beta hcg was high. The doctor was shocked and prepared me for an ectopic only to learn that we had two beating hearts in one sac. Due to one baby’s heart rate we were given a 5percent chance of having either baby. A little boy blessed our lives, and I vowed the next time would be different. Another beating heart and told the chance of loss after that was only 5 percent. Weeks later I had my first surgery (a d&c) from a baby that left us sooner than we planned. The doctor told me that next time we’d be fine. Three or four more losses. No answers.
Another positive test and at week 14, the doctor said we were good to go. Pre-term at week 18, dilation in week 32, a scheduled c-section at week 38 due to breech position. No, the baby moved and I waddled around very dilated with regular contractions until induction on 9/11/02. People told s that was a horrible day to be born. We welcomed a baby girl into a room of happy tears. A day for blessings, too. We thought we’d been through the worse.
At 6.5months old she was hospitalized for severe failure to thrive. At first we were told it was for testing until the doctors told us that she wouldn’t be leaving with us. The chaplain visited me while I cared for our little girl fought for life by supplying everybody around her with sunshine. She gave me strength. Today, she’s a walking miracle in many ways. She reminded me that all children are some kind of miracle. I’m so thankful for my three as they helped me become who I am today.
Four years ago a doctor asked my husband and me if we wanted to start treatments to get pregnant and we, unexpectedly to both of us, said no. A week later a family member asked us to take custody of her two children, ages 10 months and 2.5 years. We had an insta-family!
After a year long court battle with a third party we finally got declared a family and decided we were done. Instead, just over a year later we accepted a referral for two little boys in Uganda. Our expectation was that we would be home with our sons within six months (the standard at the time) but instead we hit stall after stall. We ended up spending four months in Africa and over two years in process.
I would say that we’ll never do this again but I just can’t. Our adoptions went a little sideways but we’re still a family now.
There is a certain beauty that comes with being able to tell our children how hard we’ve fought for them and how we never gave up. It’s not unique to us or even adoptive families, it’s something that binds us all as parents. We love our kids and so we fight like hell for them, whether that means spending months in Africa or raising awareness for their circumstances (whether it be DS or HIV or cancer or whatever) or just making decisions about how raise them. Good parents know that sometimes you just have to be on your child’s team no matter what the battle.
I am so thankful that we get to parent these four kids. I’d go through all of it again in a heartbeat. They belong so absolutely to us and we are so fortunate to know them, let alone parent them.
Our life certainly hasn’t turned out how we envisioned.
In August 2011, our then 2 year old daughter (she turned 3 in November), was diagnosed with acute lymphoblastic leukemia. One of the most heartbreaking days I have ever ever felt as a mom.
Not a “club” we wanted to belong to, but on our journey we have met wonderful families and truly inspirational children. Our daughter, T, has battled this with more grace and courage and strength then I ever would have imagined a 3 year old could.
She just finished 8 months of intense chemo, and is now in 18 months of maintenance which means daily low dose chemo.
She is my beautiful shining light in what could certainly be a dark, unwelcome journey.
Thanks for letting me share our story! Loved reading Bloom. We truly are more alike then different, we are all just given different journeys to travel.
Katys Story
Katy’s Story as written by her mother, Amiee
After 6 years of infertility, and several failed IVF cycles. Mike and I were finally pregnant. At our routine 18 week ultrasound instead of finding out if Baby Murphy was a boy or girl, we were informed that our baby had a serious heart defect.
The left side of her heart was only 1/4 of the size it should have been. She was diagnosed with Hypoplastic Left Heart Syndrome. At that point we were given the opportunity to terminate… but for us that was not an option. The alternative, we were told, was a series of heart surgeries to reconstruct her heart. The first surgery being immediately after birth.
Katy was born five weeks early due to my preeclampsia. On December 20th 2007 after a normal, and uneventful delivery, much to everyone’s surprise Miss Kathryn Marie Murphy was born screaming and PINK! After birth (and a few cuddles with mommy) Kate was taken to Children’s Hospital Boston.
The team at Children’s didn’t quite understand why Kate appeared to be doing so well, her “echo” still showed a significantly small left ventricle. Yet, somehow her little heart was keeping up with her body’s blood flow needs. She was a Christmas Miracle in the Cardiac ICU. No one on the floor has ever seen a HLHS baby this healthy. After 10 days of observation, it was decided that no surgery was needed at this point and they let us take our baby home!
At our two week cardiac checkup it was decided that more study was needed. Katy was admitted for a cardiac catheterization, and an MRI. After another 10 days of testing and observation, we were sent home on 3 heart meds, again no restrictions.
Over the last two years Katy has continued to baffle the doctors, because she is doing so well. Her heart meds have kept her healthy. Her diagnosis was changed from Hypoplastic Left Heart, to Restrictive Cardiomyopathy.
The only noticeable symptom Katy shows is that she is tiny and has a difficult time gaining weight, even though she is a great eater and is on a high calorie diet. We estimate she eats 1600 calories a day, and she only weighs 20 pounds. It became a concern when she stopped gaining weight at two years old.
As a result of her not gaining weight our cardiologist Dr. Marx, who is GREAT, decided that another Cardiac Catheterization and MRI was needed. The cath showed her pressures to be seven times the normal pressures. After doing well for so long, Katy’s care was turned over to the transplant team.
We were listed for transplant in July of 2010. We were told that the expected wait was 3-6 months…we are still waiting.
To meet Katy you would not believe that she’s a little girl waiting for a new heart. Up until this point we have been waiting at home…it was just decided last week that Katy’s heart is just too sick and we are planning to be admitted to the hospital to continue the wait.
http://www.murphy216.blogspot.com
I am a researcher. Everyday I study the depth
of the Universe and the galaxies surrounding our,
but my biggest dream is something simple: become a mom.
Said so, I was pregnant twice in 2011.
We were so happy to become parents of a boy. At the 18 weeks ultrasound we
discovered the baby had a problem with its legs. Both of them. Something else could have
been associated with that but there is no test to check this. We knew our decision about
a sick baby and we were devastated from the first second about it.
My mom has MS and she cannot walk properly and she had this problem for 20 years now.
I had a motor accident in 2006 and since then I have a lot of problems with my legs
and I have a big scarf on my left leg which remind me about it every day.
Said so, having experienced what does it mean not be able to walk properly, I would not give this to my son.
And we decided for the termination of the pregnancy. On April 29th it has just been one year.
I was pregnant again in the fall of 2011 but at 8 weeks there was no heart beat.
When I am alone I just spend the time to think about them, my kids, and how they would both
like and how old they would be now. And I am looking forward to the moment we will be together again.
We are still healing. It is a long process.
I would quote that “Healing is a bit like watching a flower bloom. You don’t really know when it’s going to happen.”
I am here sitting and waiting and looking forward to the moment in which I will be able again to face a new pregnancy.
I am scared and anxious, worried and excited waiting for the future.
I hope my story will be useful to someone else. Thanks Kelle for your blog.
My husband and I never wanted children, we wanted pets and we have six of them. One is a blind, deaf dog named Asha. She was born that way, the product of bad breeding. We got her from the humane society when she was 5 months old, that was 10 months ago.
I had ideas of how it would be to raise a dog like Asha. I knew we would have to do things differently, but honestly didn’t believe it would be a big deal. After Asha had lived with us for three weeks, she started having seizures. Something in her changed and she has never been the same. Our blind, deaf puppy became frantic – running, barking, not sleeping. There was no peace in our house and I was so angry about it. I would sit on the floor and cry because I missed how our life had been before Asha . I missed how I thought I life would be with Asha. I didn’t tell anyone because I was embarrassed of my feelings.
We’ve spent the last six months working with all kinds of vets, trainers, alternative medicine practitioners and have made tremendous progress with our girl. I have let go of the life I planned and am now living the life I have. I read your book and cried through the entire thing. Your words Love me. Love me. I’m not what you expected, but oh, please love me hit me right in the heart. I feel that from our Asha. And I do love her. She is sweet and smart, happy and loving. She is fearless. She is showing me that life can be amazing, even when it doesn’t go the way you planned. And even though I don’t have human children, I am still a mom.
Tracy Bryant
http://www.tbtfitness.blogspot.com
We found out in the fall of 2007 that we would be blessed with a baby the following summer. We waited with anticipation for the 20 week ultrasound when we would find out, boy or girl? My mom is an ultrasound tech and came with us to the appointment. Around baby’s belly, my mom and the tech who had been chatting (turns out they graduated together years earlier- small world)….the quiet was broken when my mom said “what is that hydronephrosis on her kidney?” The tech doing my ultrasound shot her one of those “if looks could kill” glares and after a few more pictures she sent us on our way, with no news. I tried talking to my OB about a week later at one of my prenatal appointments, and she kind of brushed it off as nothing, but scheduled us for the beginning of many more ultrasounds for the next 3 months of pregnancy…and the prognosis wasn’t great. One kidney was severely damaged due to a ureter formation birth defect, and the other had mild damage. I started envisioning kidney dialysis and years on a donor list. When my water broke 3 hours after my baby shower, 5 weeks early, my heart broke too, because I knew this baby was going to need all the strength she could muster for the fight ahead. She surprised us all by coming out fighting, despite being 5 weeks early and a tiny 4 lbs 12 oz. She didn’t need oxygen or anything, and was able to come with me to the postpartum unit, and home with me 2 days later. We still had a long road ahead, lots of invasive tests, hours and hours in waiting rooms to see specialists that had momma shaking and in tears when we learned the prognosis that our 6 week old baby would definitely lose one kidney and the other one was stable, but still not working properly. We prayed and tried to have faith that our sweet girl would be ok. 9 months later, another test showed us that the issue on her left kidney had resolved, but her right kidney would need to be removed, because it was a source of potential infection, which could lead to high blood pressure, and even death. She continued to take the antibiotics she’d taken every day since birth, and we scheduled her surgery for when she was 14 months old. Miraculously, they were able to use a surgical robot to remove her kidney, and she was left with just 3 tiny (less than a centimeter each) incisions. Her recovery was very quick. The first 48 hours were tough, but she was a trooper, and cuddling with the hospital labrador, Henry, about 20 hours post op. 3 years later, she is a very happy little preschooler, and we learned last week that her remaining kidney looks “awesome” in words of her doctor, and she’s graduated to only needing checked every 2-3 years instead of yearly 🙂
Hi Kelle – faithful follower. My Mom was diagnosed with cervical cancer three years ago. To say it rocked my world would be an understatement. She passed away September of 2011. I quit my job and became my Mom’s helper and driver to doctor appointments. I learned all about cancer, saw many people with it and sat with my Mom thru each chemo treatment. Those three years were trying times for my Mom and our family. I am definitely a different person having gone thru the journey by her side. Good things always come out of bad circumstances. We are a much closer family and I never take any day for granted.
Thanks for sharing your family with us.
I feel somewhat inadequate posting, as the hardships that I have faced in my life have little to not comparison to yourself, or to those who have already posted. My life has been pretty straight-forward thus far, however, it wasn’t until recently, being exposed to your blog, your book and others around me that I finally woke up and began to enjoy it.
I am the mother of 2 beautiful girls, however, I must say that up until recently I wasn’t making the most of life. I think I have always felt that I have nothing to complain about, so I need to push down the feelings I have, that this is really hard, that maybe this wasn’t meant for me… but I have come to realize that everyone’s struggle is unique, and whatever difficulties they are going through we need to acknowledge their feelings, challenges and emotions as real (although yes, there may be someone going through something we would perceive as much more difficult). Too often you hear, “oh you think that is hard… you should listen to this…,” but every human being needs affirmation, regardless of their circumstances.
So, unlike many of you, my struggles to me feel somewhat insignificant, but for me they have been real. They have been learning to come to terms with being a mother, and recognizing that I have the power to make choices… and those choices can directly impact the life I live, and how I approach each day with my girls.
I am by no means perfect, nor do I ever hope to be, but I have learnt that each moment lived, each day is a day that I can never have back, and I don’t want life to slip me by without having lived it to the fullest.
As one of my favourite authors Lucy Maude Montgomery quoted in her book “Anne of Green Gables, “isn’t it nice to think that tomorrow is a new day with no mistakes in it yet?”
http://morethanblueberries.blogspot.com/
Okay… I do share the same almond eyed precious gem that you have, but surprisingly, I am not writing about her..
This is about a very special moment I had with my father who was diagnosed and suffering from dementia. He was diagnosed with Lewy Body dementia which is a very aggressive and fast paced form of dementia. From the time he was diagnosed until he passed was only about seven years. I just remember praying to God for about a year for God to bring my dad back to me, even if it was only ten minutes, so I could tell him just one more time how much I loved him, and all things that I loved about him.
This one particular day, I went to visit my dad in the assisted living; and at this point in his illness, it was pretty rare that he knew who I was. I felt this overwhelming feeling like I should grab his hand and start talking, start telling him all the things I needed to say one last time. Well, I began and my dad never took his eyes off of mine, his eyes began to fill with tears. He looked like he felt sorry for me, and when I finished, which was about ten minutes, he responded Thank you Cescee(my name). I knew that God answered my prayers and granted my dad and I a very special moment together. I also knew I was supposed to share it, but was unsure when or where, until my mom and I were driving to prepare for his funeral arrangements about 3 years later..It hit me like a hurricane, I had that same strong feeling that I was supposed to share it at his funeral. I did it, I spoke at my dad’s funeral about our special moment that God granted us. I knew it would not be the only time I was supposed to share it, maybe this is the next place I am supposed to.
I learned two things through this, the love that God has and the power of prayer. Thanks Kelle for letting me have the opportunity to share this once again!
Thanks!
My story is different in that I am finding beauty in the life expected instead of unexpected. Except for the occasional bumps in the road, my life is going as I always thought it would (Unless you count when I was around 10 and thought I’d be a famous actress or singer, that didn’t pan out!) I grew up with a happy childhood, parents still married, two great sisters who are still my best friends. I went to college and met my future husband and after deciding to put my plans of moving to a big city and transferring schools, ended up staying where I was to graduate. Shortly afte that we got married and I did get my chance to go try out some big city living , but we ended up right back where we started in my beautiful hometown. (he had already done the city thing having grown up in Detroit and loved our small city in Montana) After being married awhile we started our family and now have two beautiful daughters, Ava & Layla. I get to stay home with them for the most part and I enjoy the beauty of our average, happy daily life. I guess on one hand I didn’t expect to be so content living in the town I grew up in….I did always think I’d end up someplace bigger and warmer. However, once I had babies I knew how much I loved being around my family, sisters, cousins and friends that are like family. We have talked of taking shaking it all up and moving someplace warmer and raising little beach babies…but at this point we are happy with our beautiful, simple life.
I have loved hearing your story through your book and blog. Your positive energy and love for your girls continues to inspire me. I have always kept a journal of my life and after months of reading your blog, finally decided what the heck? and started my own. (http://www.familyfoodfashionfun.blogspot.com/)
Thanks for letting us all share our stories with you as you do with us everyday!!
In February 2012, we gave birth to a daughter who was diagnosed in utero with Spina Bifida. We used to say when asked if we preferred a boy or girl, “We don’t care. We’re just happy as long as it’s healthy.” Now that my perspective has changed, I will never say this again. I’m happy despite the fact that something is “wrong” with my baby. Maybe we should rethink how we answer that question from now on? When you think about it, saying that you’ll be happy “as long as the baby is healthy” doesn’t even make any sense. Would you be UN-happy with a child who is less than 100% healthy? Would it make you love your child less? It isn’t your baby’s fault. It isn’t even your fault. It just is. And believe me, when you find out something is “wrong” (and I use that term loosely) with your unborn baby, you cry for a couple of days but then you put on your game face and deal with it.
• You start looking for all the information you can so that you can make the best decisions for this little person you’ve yet to meet.
• You seek out people in similar situations to see what real life with whatever it is you’re facing looks like.
• You find yourself thankful for the little things in life, especially good health.
• You rely on your faith more than you ever have before to help you through the chaos and fear.
• You come together as a family and learn to lean on each other as your “book” writes another chapter you hadn’t intended.
Basically, you live better. And if all of the above stuff comes about as a result of something being “wrong” with your baby, how can you not be happy?
-Kristen Slone
http://www.agirlnamedcharlie.com
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In 2009 me, my husband and 6 year old little boy decided to move into a 5th wheel so we could pursue building our dream home. My husband is a builder by trade and we had waited for many years for “our turn.” We figured it would take about 6 months of 5th wheel living and then we would be into “normal” life again. As soon as we sold our home, and started packing, I found out I was pregnant. After 4 years of trying I got pregnant while on birth control. Go figure! We decided to still move into the 5th wheel and hope to get built before our daughter arrived. My husband then got and out of town job so we moved the 5th wheel there for several months. That put our home on hold. Then the building industry went to crap and jobs were harder to come by. It was better to take paid jobs then to work on our home. Long story short. Natalee was born and came “home” to out little 5th wheel. What a blessing in disguise. I could spend all my attention on her and enjoying her as a baby I thought I would never have and not have to worry about keeping a home, building a home, just her as a baby. Almost 3 years later…2 of that without our own toilet and sometimes with no water due to freezing water lines in the winter…we built and moved into our home. People asked us many times how we lived in such small place for so long and I said “I bloomed where I was planted.” You make the best of it and realize that it makes your gamily closer. That you get out and enjoy nature more, and that you need VERY little to live. It wasn’t the way we planned the last 3 years of life but I wouldn’t change the experiences for anything!
Dear Kelle,
Thank you for the opportunity to Bloom beside you! Here’s my short story:
Since my brother, Willie, has autism, his thoughts are a mystery. As such, I look for sudden windows into my brother’s mind and heart. I remember a time one such ‘window’ opened: during the era when my brother was obsessed with ‘Snow White and the Seven Dwarfs.’ He had all seven stuffed dwarfs, and he loved to line them up in a row. He referred to himself as ‘Grumpy’ or ‘Happy’ depending on his mood. The film was an excellent way for him to learn about identifying emotion, since each dwarf is typecast, consistent in facial expression throughout the story.
One day, my parents asked, “Willie, if you’re Happy [he was Happy that day], who is Mommy?” For reasons inexplicable, Willie replied, “Mommy is Bashful!” [Note: Mommy is not bashful. However, Bashful is a very thoughtful, kind dwarf.] My mom then asked, “And who is Daddy?” Willie said, “Daddy is Doc!” [This choice seems more logical. My father wears glasses, has a calm, direct way of expressing himself. He has a quirky sense of humor, and he’s a natural leader.] Finally, my mom asked, “And who is your sister, Caroline?” With no hesitation, Willie said, “Caroline is Snow White!”
There you have it. To my brother, I’m a Disney princess. He may not say things like, “Caroline, I look up to you,” or “Caroline, I’m glad you’re my sister,” but he can cast me in a starring role in the movie in his mind. I may not be able to see all I’d like to see of my brother’s mind and heart. But what I can see is astonishing. He’s creative, and hilarious, and generous with his casting.
Maybe, just maybe, I can only see in part because to see fully would be too much to bear.
http://www.awishcomeclear.com
Thank you, Kelle, for all you do and all you are.
I never thought I would have another baby…out of the blue, on birth control, I became pregnant. Such a shock, but joyous! She is three now, and on the Autism Spectrum. She is nonverbal (but actually just started saying “mum” to me, and we are not English! HA!) she signs, she has some sensory stuff, and is pretty anxious. She is loving, sweet, and makes me learn things every single day.
I worry, that we are always a bit behind everyone…that she may always have it a bit difficult…that she may not be “typical” but I don’t care. Every day we grow, and learn…I found beauty in the unexpected diagnosis of Autism. My Ava is beautiful. Maybe not “typical”, but beautiful nonetheless.
You have taught me so much, reading your words…makes me feel okay. Makes me feel like I am alright, and we are going to be alright. I can’t thank you enough. From this Army wife in Texas… Much love!
I’ve been blessed with 3 beautiful children. My older two were premature, at 33 and 35 weeks, and so naturally, when I went into labor with my 3rd at an almost-term 37 weeks I thought that I had finally broken this curse and would have a “normal” baby. I am a completely single mother for him, and from the get-go things were so much different and harder. Well, it turned out that he is anything but normal. He is a special needs child, with an abundance of medical issues, including the inability to eat and requirement of a gastronomy tube to be fed. His has so many allergies and a condition called “Eosiniphillic Esophogitus” which will prevent him from ever eating a “normal” meal like most people; if he ever gets to eat at all, with the fear he faces due to how much food can cause pain. He has muscle tone problems that prevent him from being active for very much of the day. He is delayed, and considered to be Autistic in some form; as well has plagued with Sensory Processing Disorder. The world can be scary for him without even trying. While that only skims the surface of his issues, it truly does not define him. He has the happiest demeanor for a child I have ever known. He loves completely and with his whole heart. When he does choose to show it, it’s overwhelming. He has taught, and continues to teach me and those around me so much about just enjoying life and being present. While life can be hard, I would never trade him or the experiences and joys for anything. As a not-first time mother, I was meant to be his mother, or most of his issues could have remained undiagnosed. I thank God every day.
Battling mental illness is something I never thought I’d have to face. It was August of 2011, and I was in my 3rd week of teaching high school. I can’t adequately describe what happened, but what I do know is that my mind began to turn against me. My mom said she ‘knew there was a problem’ when I ran out of formula for my 9 month old daughter. After a week of downward spiral, I ended up in a mental hospital. While there, I continued to go downhill… medicines weren’t working and neither was any other form of treatment. After four weeks, I was released and I continued to seek help from a psychiatrist who eventually found a combination of medicines that helped me.
I have learned so much from this experience. Foremost I have learned how important it is to treat people with dignity. I also have learned about myself- how much strength is within me. I had to come back from tremendous hardship, and I am proud of how much I accomplished. I am also proud of being a mother. When I first came home, I thought I was an unfit mother. I was ready to give my daughter up to my parents. But with a lot of therapy and perseverance I was able to return to a place where I am actively involved in my daughter’s life. I love her so much and being her mom has truly helped me in my recovery. Life has led me to an unexpected place- I’m no longer a teacher and I take daily medication- two things I would have never thought possible. But in many ways I’m more satisfied with where I am now than where I was before this. That, in a nutshell, is my story.
-Amanda S.
Hi Kelle,
My story is very similiar to yours; in fact it happened about 2 1/2 months after Nella was born.
I had a normal pregnancy and being pro-life, I had refused all pre-natal testing. My water broke 4 weeks early, and was told I needed an emergency c-section. When Ava was born, I clearly remember that nobody in the delivery room congratulated me. Instead, everything turned into hushed voices, whispers and nurses who were trying to act busy.
When they wheeled me back to my recovery room, a doctor that I did not recognize came in and sat down. She said that they had suspected my baby girl had Down syndrome. I don’t remember much after that…all I could do was nod my head up and down. I think I was in a state of shock because I couldn’t respond with my voice. A few hours later, they told me there was something in her blood that led them to believe she had a high likelihood of developing Leukemia,and they took her via ambulance to The Children’s hospital, where she stayed for over a month.
Ava is now 2 years old and has done so much for me and our family that it’s hard to put into words. I see everything so differently now…more clearly. She has enriched my life in so many ways. I now look at people with special needs in the eyes, approach them and try to talk to them instead of looking away like I once did. How did I not notice these beautiful souls before? I suppose God sent her to me not because I am anything special, but because He knew that I needed to be fixed. She is the joy of our lives and I can’t IMAGINE my life without her. Ava is my fourth child, and we’re expecting our 5th in a few weeks, so there will be even more laughter and joy in our home.
Your blog saved me at a very dark time, Kelle. And for that I will always be grateful to you. You are an inspiration for many mothers in the world. Thank you for allowing me to tell my story.
Julie O
Willoughby, Ohio
Although I am not a mom, or have stories of littles, I do have a story of life changes, life unexpectedness.
At the age of sixteen, I was flooded with previously blocked memories of my father sexually abusing me. When I went to my mom about it, to begin the process of healing and restoration, she told me instead that I was probably making it up, that sometimes people lie about things like this. In Colorado, DHS gets 300 abuse cases a month. They only get to 60. I was one of the ones that fell through, that was told it wasn’t worth their time. They threw me back into my home and I was told daily I was a liar, they tried to cover it up and pretend it didn’t happen. They tried to “fix me”. They shipped me to another state where I was away from anything I knew, unable to communicate with anyone I loved. After a lot of time, I came back home and it was a constant fight to keep y head above water. They eventually kicked me out, and I willingly left. I was finally standing up for myself, standing up for the right thing and I was told I was wrong, that those things aren’t for talking about. At the age of 17, I am not informally emancipated, and fighting my way through adulthood. Fighting my way through healing. I am learning what real love looks like, I’m a photographer seeking life and I am blessed to be given it in many forms. I have days I am desperate for restoration, dying for my family. But now is not the time. I have days of frustration and sadness and brokenness. But it is in these times that I bloom. It is in these times that I find I am worth more than I was given, I find it’s not my fault, that I didn’t deserve it. I am enough. I am blooming.
Melodie Ann
http://www.lifeasphotographers.com
http://www.melodieann.com
This is Kelle’s dad and Nella, Lainey, Brandyn and Austyn’s “Poppa.” I have no story to tell, but just wanted to–after seeing our precious Nella’s photo on here–say how much we love our girl. She is perfectly Nella. She is not “broken” and there is nothing “wrong” with her…for she has mended us and reminded us what is right. She quietly calls us to reconsider “perfect” and “preferred.” She has rearranged goals and ideals. She has made phrases like “Holy Cow” and “Ohhhhhhh” elements of a sacred litany. She lights up our lives with her smile and raises the ceilings of our hopes with her wide, inquisitive eyes. Her independent spirit tells us we don’t need to hover. She strains my hearts’ seams and invites me to more…Yes, it’s not a story to win a prize, for we are already enjoying our prize. Just wanted to say.
–Poppa
First of all, can I be friends with Heidi?!?!
Second, I just finished the book today and I was wrecked by it. I know (to some extent) the emotions you were feeling that first night in the hospital. You see, I was in an abusive relationship for 5 years. From 17-22 years old. I’m 23 now, turning 24 this year, and I have had to face so many mountains in my recovery process. I struggled with PTSD (Post Traumatic Stress Disorder) and thankfully, with the help of weekly counseling and medication, I have overcome that! Countless nights I spent alone in the dark facing demons of my own and just wishing sun would arrive again. For 3 weeks I slept with the lights on because I couldn’t handle the darkness and all it brought. I was beaten, raped, publicly humiliated … but I triumphed over those things to become the person I am today – a survivor.
Kelle, your story and your precious children inspire me to adopt a special needs baby of my own someday. Every one needs love.
My mom passed away when I was twenty-two. Just two years prior, we were taking nightly walks, discussing what the future was going to look like. I was going to have a backyard big enough for my mom to build a separate house on. “That way,” Mom said, “I’ll never be too far from you or my grandbabies.” I laughed and promised her I’d make it happen; although, regardless of how the future looked, one thing was certain: My mom would be in it.
She won’t be. She won’t be here to see me graduate from grad school. She won’t be here to watch me get married or cradle my future babies. And that hurts. It hurts a lot.
A month before my mom died, I was sitting in bed with her watching Hope Floats. “Things look really hopeless for Birdie right now,” my mom said, breaking the silence.
“That’s because they are,” I responded, less than optimistically.
“No,” Mom said thoughtfully. “They look really hopeless right now, but things always get better.”
At the time, I thought my mom was just thinking aloud, but now I can see that my mom was trying to tell me something. She was making me a promise. It will always get better.
I’m not a mom yet, but I was raised by an incredible one. And I know that if I really love her, if I’m really grateful for the life she gave me, I will live it. Fully. My mom didn’t raise me just to dream of a future in which she was present, she also taught me to dream of a future. A future of joy and laughter and goodness. She taught me to dream of a tomorrow that’s better than today.
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Sandra – you’re beautiful and you’re perfect.
Three years ago, in an effort to help raise money for cancer research, I agreed to have my head shaved. In all started with a little wager. I told my coworkers if they could raise $10,000 over the course of the week, then my straw bale would hit the floor. Knowing this was a stretch goal, and also knowing there was enough people who would love to see me bald, I laid out this proposal fully aware of the inevitable outcome. I was also aware of the following:
1.I would not look like Demi Moore.
2.It was a tribute to my friends and family who have battled cancer; I’d rather have them than my hair, so the decision was an easy one.
In the end, we raised over $17,000 in one week, which amounted to over half of what was raised in our entire city. Do you ever feel like selfless acts are quit selfish in nature because you feel so euphoric afterwards? It’s as though kindness taps into a part of our psyche that longs to feel connected to others…a universal soul that has us reaching out to those in need. The human part of it? That nasty ego bit? I felt naked without my long, blonde hair. Exposed. Different somehow. The way strangers looked at me, stared at my bald head, quickly looked away when I turned to catch their eye – it made me angry. Then it made me sad. Because those who have to struggle through life…those souls struggling with anything, they have enough fear. The fear, the weight of being treated differently by others, should never factor into the equation. What they’re bearing is heavy enough. And yet we live in a world that puts appearance on a pedestal – we’re told to look a certain way, act a certain way. Sometimes I listen, most times I don’t. And yet it made me question how much emphasis I sometimes place on appearances, without digging deeper, much deeper, to find where real beauty lives. Above all, this is what I want to teach my children. Beautiful people don’t just happen. I’ll wager a guess we’ve all had crap to deal with, but with that we have a choice. We can let that crap stay on the surface, smelling badly, wafting nasty odors, giving us a foul disposition and tainting everything and everyone we come into contact with, or, we can use that same crap to act as fertilizer. Let it seep to our roots, become part of who we are and learn from it, grow from it and bloom because of it. Again, it’s a choice to be kind and compassionate. Live your life how you want people to remember you – it’s your only legacy. It’s only after someone has dealt with life’s hardships and trials that they come out shining. Flaws are beautiful – they make you raw, real, human. I don’t want my children to ever confuse beauty with what they look like; that’s just genetics. Rather, beauty stems from that inner light that burns brightly. Beauty comes from being the best part of someone else’s day. Beauty comes from being real. This is what will make you unforgettable.
Janita Van de Velde http://www.postcardsneverwritten.blogspot.com
I have suffered from paralyzing and painful social anxiety since toddlerhood. It was most pronounced during my high school years. I was homeschooled in sophomore and junior year and went through the paces of intense counseling. My therapists challenged me in ways which made me hate them, which made me hurt more and which ultimately helped me to heal. After years of suffering in a world which celebrated extroverts and shunned the shy, I had validation and support.
My life was coming into focus. With diligence and guidance I was able to graduate from a private high school and eventually graduate college with honors and a degree in Art History. I had finally begun to feel secure in my life’s plan where I envisioned myself on the PhD track. But I became pregnant in my junior year of college and embarked on a different path. I was terrified because the world I had finally grown accustomed to was about to tip and I knew I could not remain ensconced in my anxiety. I needed to push through that tangle in order to grow.
My son would need stimulation from the outside world. As he grew, I constantly battled my apprehension in order to develop partnerships with teachers, doctors, coaches, other parents. My son is vibrantly extroverted- drawing others to him- to us. As his circle grew- so did mine. As he flourished with trust and faith in others, I did too. This little person, now a teenager, had given me a sense of belonging and community I had never had the privilege of enjoying when I was a child. Anxiety is still excruciating, but I am forever grateful that my path diverted when I had Max because it allowed my strength and resolve to effloresce.
-Amy Cappelli
To say I’ve found beauty in the unexpected is like saying the sky is blue. It doesn’t begin to capture the vibrancy of the pinks, purples, oranges, yellows, blues and even grays.
When I was 26 weeks pregnant, I learned my baby girl had a cleft lip and palate. On that day, I cried an ugly cry, the kind that comes from a place of despair and deep sadness you didn’t know existed until you become the mother of a child that some might see as “less than”. Those first days were brutal as I struggled to find my own peace and share this devastating news with people who had a lot of platitudes and good intentions but no real understanding of my heartache.
A 4D ultrasound revealed the extent of the cleft. I remember thinking my daughter would be born with the Grand Canyon etched deep in to her face. The vulnerability of my unborn child was crippling to me but now I realize it was my own vulnerability that made it hard to breath. I worried about everything and that quest of worry became all consuming. Just how deeply wounded would her spirit be with judging looks peppered with surgery after surgery. Would I be a good enough momma to counter that?
Then one day she was here. I saw her and my heart immediately exploded with too much love to contain in such a small space. The most beautiful baby girl was lying in my arms and she was mine. I kissed her lips and made a promise that her daddy and I would protect her and love her for always and forever.
Now we are five years later in our journey and her faint scar is beautiful. It holds the secret to her strength, resiliency, and spirit. The most unexpectedly beautiful gift lies in her smile and laughter that says “I have arrived”.
Perspective
I thought I’d be more upset. I thought I would cry, have sleepless nights, and ask God repeatedly, “Why?” That’s everything I felt in September as we were approaching the possibility or foreclosing on our house. But now that the moment is here, I feel at peace with it. We are just a military family trying to do the best we can, trying to do everything right. We fell into a bad housing market when the military decided to move us. We exhausted our resources and fell into the unexpected.
But I have my beautiful children; my son who is playing in the window, smiling at me as I type this. My daughter who is upstairs asleep; her breaths I can hear in the monitor. And my husband who is currently running, sleeping, and eating in a field training to be the best Marine he can be and providing for our family. And yes, we have a roof over our head. We may not have been able to sell our old roof but the good Lord provides a new roof and we couldn’t be more content if we tried.
We sat everyday for over a month last fall praying with one of our prayer warriors. We prayed for peace, we prayed our house would sell, and we prayed for a miracle. That was around the same time our newborn daughter was in the hospital with pneumonia. I learned a lot about perspective that week. I learned what’s really important, what really matters. A credit score doesn’t matter in the big picture. My beautiful family is what matters. Those desperate prayers in the fall taught me what to really pray for. It’s the peace that surpasses understanding, which matters not life’s circumstances. I thank the Lord everyday that prayer was answered.
Bailey Flores
http://www.thefloresgarden.blogspot.com
Here is an excerpt from my recent blog post celebrating our daughter Bereket who has been home with us from Ethiopia for 4 years now. Our path to be each other’s family has been long and difficult, but in the end, exactly what it needed to be. (excerpt below):
I love this girl. No, you really don’t understand. I LOVE this girl. Love like this doesn’t just happen naturally. I know what I’m talking about! It doesn’t just happen when you don’t get to start out together from the place of tiny baby and enamored mother. When baby can do virtually nothing to piss you off, when all you know is that you love that tiny little sleeping sack of potatoes bundle and you would hold them and rock them all day and all night if they needed you to because there is just nothing else like it in the world. And when they get just a tiny bit bigger, just a couple months old…. they coo and smile at you, you have an amazing ability to soothe them, they actually prefer you over anyone else!
It doesn’t work that way with most older child adoptions. And I knew that going in. I had read all about it. But it was still really hard. I couldn’t soothe, I wasn’t preferred, I didn’t want to hold her for an hour, let alone all day and night, and she constantly did things to piss me off! It’s easy to pour out your love on someone else’s kid for a couple hours and happily send them on their way, but it’s a lot harder to babysit someone else’s kid 24/7 with no end in sight. That’s what it felt like at times. And I spent many nights wondering what we had done bringing this child so far across the globe, taking her from everything she had known and giving her a parent’s love that was a cheap imitation of the real deal.
But that was then and this is now. This true love, it takes time. And there’s no shame in the journey because we had to go there to be here. This place is glorious. She and I both know it. I am the solution when she is hurting and she brings me joy every day. My heart hurts with love for her! I thank God that He is allowing me be her second mother. How am I worthy? I marvel over this girl.
–Holly
I know that feeling you get deep in your core when the “unexpected” hits you, but I also know the feeling of pure joy when you do indeed “[find] beauty in the unexpected”.
My daughter, Lola was born in a Costa Rican hospital very early on a Tuesday morning. We were told she was “perfect” and had no reason to think otherwise. Yet oddly enough, I had this inkling looming in my head that something was wrong with Lola’s vision. I had been told to anticipate that bonding moment when Lola and I would meet eyes for the very first time yet that moment never came. Lola never looked at me.
A few months later, my thriving child began to regress. Her smile faded, she stopped eating and this strange tic began to appear. Her arms would jerk straight out, her legs would too and she would appear to be in a far off distance. This strange behavior went on for just over a week and then I began to panic. I endlessly searched the Internet and finally found a YouTube video of a little boy exhibiting the same signs. My daughter was having seizures.
Lola was diagnosed with a rare and catastrophic form of epilepsy that is called West Syndrome or Infantile Spasms. We would later find out this was a result of a rare cell migration disorder that severely affects her vision. This explains why her vision never thrived and it certainly explains why we never shared that eye contact when she was laid on my chest.
Our world was rocked when we found out about Lola’s numerous conditions. We went through a honeymoon period thinking our daughter was perfectly healthy only to have our hearts broken to learn about diagnosis after diagnosis. Lola is now 16 months old and is an amazingly strong individual. She is an inspiration to an entire community and I couldn’t be more proud of every enormous milestone and every tiny inchstone she makes. While life has taken an unexpected turn, I’m honored to be on this ride.
Meredith
http://www.sayholalola.com
My story begins with a positive pregnancy test and ends two years later.
That baby was born sleeping. We named him Bennett, which means blessed little one. The morning before he was born, I knew it was his name. I didn’t think that 24 hours later I would be planning to bury my baby boy. I had been planning on ordering a car seat and planning the theme for his nursery, but instead I was discussing caskets and obituaries.
My life had been turned upside down. I needed to figure out this new normal.
Shortly after Mother’s Day there was another positive test.
There were complications and the outcome was apparent as the nurses rushed me down the hall, into the room I delivered Bennett. The doctor took my hand and said “I’m sorry, but your baby does not have a heartbeat.” It felt as if my body was being torn in two as I labored and delivered Elijah.
After delivery, my temperature shot up to 103.5. My pulse was racing and my respiration was high. My blood pressure dropped to 50/30. My husband saw me start to leave him. I held my baby as I was whisked to the ICU where I was diagnosed with a septic EColi infection.
I started to associate pregnancies with funerals.
I also started to appreciate all the blessings I had been given. I was motivated to live out my dreams, because no one is guaranteed tomorrow.
I embraced my new normal.
Two years after that first pregnancy test, I delivered my micro-preemie son, Linus. He amazes me everyday.
My sons have made me the person I am today. Because of them I walk a little taller, I have more confidence in my voice, and I am inspired to make my dreams come true.
Jennifer
http://adventuresbeyondthecrib.blogspot.com/
I had my first daughter Emersen, just a few short weeks before the arrival of your Nella. I remember reading your blog when I was home on maternity leave and just crying for you. I could not imagine finding out the perfect baby you had envisioned was not to be. Fast forward 9 months. I was 4.5 months pregnant with our second child. The 13 week ultrasound had been perfect, so when we were going for the anatomy scan at 19 weeks, we were confident we would see a perfect little baby. Boy, were we wrong. I pretty much knew something was wrong right away. It was taking way too long to do measurements and on the screen it kept saying “12 weeks 6 days”. Then when the genetic counselor popped her head in the room and said that the doctor wanted a few more images, I knew for sure. The doctor came in and said “there were a few abnormalities with the ultrasound”. He then said that our girl, our second daughter had “skeletal dysplasia”, her legs and arms had stopped growing around 12 weeks. I was devastated; I couldn’t breathe or speak through my tears. The doctor continued to talk in medical speak and my poor husband asked “so she will just be a little person then”. The doctor then said those fateful words “no, this is fatal, there is less than 1 chance of survival”. A few days later our girl was gone. Two months later I found myself pregnant again but it was not meant to be, I miscarried a week later. Within 2 weeks, I was pregnant again, very unexpectedly! 9 months later, on Halloween, our perfect girl Delaney arrived! Most moms ask if there are 10 fingers and 10 toes, I asked if she had arms and legs. I am grateful for each pregnancy and the strength it has given me and helped me become a much better momma two my two girls.
Kelle, thank you for this opportunity to share and for you always sharing with us. While reading your book, I felt like I knew you, we were friends and I knew your girls. Please continue to share with us your stories, your photographs and your wonderful view on life.
~Melissa Goguen
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My story might be a little different than others. But it’s still the same because thankfully I learned from it. And I can now look back and say thank you for having to walk that road! I was married and infertile. We were in the process of adopting my cousin’s baby. I started moving up the corporate ladder and made friends with a male co-worker. Long story short, I “fell out of love” with my first husband, decided to not move forward with the adoption (after we had the baby for 6 months) and left my faith, family and friends for a new life and new husband. Big fat fail. Fast forward a few years (2003) and God got a hold of me. I recommitted to my faith, I asked forgiveness from my first husband and many family and friends. It was a long hard road and still today there are days that memories come and I wonder how I was able to hurt so many people. My new husband (who is now my husband of almost 10 years and who I love more than anything!!) and I tried to have kids too. Big fat fail again. After numerous failed adoptions our miracle baby girl came home to us in December 2007. She was legally ours on December 17 – the same day that the baby my first husband and I were going to adopt was born. Three months later I got pregnant. Um, what?! The only time in ten years that I didn’t want to get pregnant! And I promise it wasn’t because we were relaxed! 🙂 Our son was born on December 17 – yes the same day our daughter was legally ours. Through the years I’ve learned to not have regrets. I’ve learned that God can take any situation and turn it into good. And while I’m not thankful for the choices I made that hurt so many people, I’m so very thankful for how my life has turned out and how I have learned to bloom, despite my mistakes and despite the challenges life brings.
~Missy
Expect the unexpected that is how all my pregancy have been. Lost my first one at 12 weeks of being pregnant. At 32 weeks of my second pregnancy was not feeling well and end up having a seizure and died…Husband CPR back to life…..was rushed to the hospital to have my son by c-section and then me going into a 4 day coma…One week later I was released from the hospital but had to leave my first child behind in the NICU..He came home before thanksgiving. After a year of having Ethan we moved from New York to sunny Florida…four months of living in Florida I found out on December 23 I was pregnant…I was nervous because I did not want another scary pregnancy…Thank God that this pregnancy all went well, 40 weeks and water broke…We we sooo excited had my baby girls through c-section and I heard her cry…I experiece with Amalia what I never experience with my first born but then some of the face of the nurse staff changed from a smile to a grin to a concern face…they told me she shows characterisitc of having Down Syndrome…My response was “Oh ok, is she ok?” and then it hit me….As far as I can remember I have asked God what was my purpose in this life?, what was I good for? How can I make a difference when I feel and see myself so weak…and then Amalia came….she had open heart surgery and eye surgery and I felt so strong for her and becoming her voice to get her what she needs….I see that God has answer my prayer..through my awesome daughter I have learned to take life slow and have an awesome time…to not worry so much about tomorrow because i need to live in the moment…and hearing her laughter and seeing her reach her milestones…I become her personal cheerleader and teaching my son how to see the beauty in life and appreciate those moments that makes life grand.
http://musicprayandshininglittlestars.blogspot.com/
“Has life taken you on a different path than you envisioned?” My name is Angie and this is my answer to that question.
My husband and I have seven children. They are ages 3, 5, 7, 9, 11, and 13. Our oldest would have been 17 on May 2nd if he were here. He died as a result of a car accident nine months ago.
As I look back to the day our son died, I will forever be thankful for God’s word because, as I stood in hospital looking at my son’s lifeless body, those precious words of God are what came into my mind and out of my mouth. I said as Job: “Though he slay me, yet will I trust in Him.” I could choose to become a bitter woman and blame God, or I could choose to trust that He would somehow heal our broken hearts and lives.
Our second oldest’s 13th birthday was just two days after the funeral. It was incredibly conflicting, celebrating the life of one of my children while grieving the death of another.
Author Isabel Fleece, in her book “Not by Accident” says, “I am amazed that the human frame, frail as it is, can survive such a blast.” God’s name is “Jehovah rapha,” the God who heals. Circumstances do NOT dictate God’s character. Matt’s death was not a surprise to God. He had, as Psalm 139 says, ordained all of Matthew’s days before one of them came to be.
For those who have suffered the loss of a loved one, grief is an instant bond. This is definitely a different path than the one we envisioned, yet as a result, the message board, http://www.GrievingWithHope.org, was created to provide hope and encouragement for the bereaved.
After 12 years of marriage and living in the land of infertility we decided that having our own child was not our reality. We talked about adoption. The problem was I was 41 and my husband was 44 and we felt that we had waited too long to start the adoption process. We gave it to God.
One week after our 13th wedding anniversary we received a call from a family member that changed our lives. Another family member, a very young girl, was pregnant and wanted a good home for her child. I hung up the phone and looked at my very logical husband and asked what he thought and he said “How could we not. What is there to think about?” We became parents when we least expected it and not how we had planned it.
Gracee’s final adoption was on 2-3-04 and on 2-14-04 they found that I had rare type of tumors on my ovaries and one in my breast. I had three doctors and a series of test that indicated that most likely I had cancer. My good friend told me that God had put Gracee in our hands and He would not take those hands away from her. I had two surgeries done at the same time. When I woke my husband leaned down and said “did they tell you each frozen section came back clean…your surgical team is amazed…you are cancer free.”
I wake each day so extremely grateful for another day. I did not become a mom in the way I had planned, by the way 13 is the love number in Hebrew, the year of our marriage that we got our girl. His plan was so much better than mine.
Gracee’s Mommy..always.
Life has taken me down an unexpected path but I am better for it.
My 5 year old son was born seemingly healthy but had his first seizure at 2 months old. By 9 months old he was having 30-40 a day. He was diagnosed with Epilepsy and we began the long journey of finding a diagnosis. Two years later he was diagnosed with Mitochondrial Disease, an incurable, life threatening disease that affects the way your cells make energy. He has a long list of health conditions associated with his disease, one of which is an intellectual disability.
Five years ago if anyone had told me that I’d have a child with these challenges I’d have been sad. And I was, for a long time. Yet, if five years ago someone would tell me that this child would bring me more joy that I could ever imagine, I’d never have believed it.
Through my son I have learned more lessons in the last 5 years than I have in my entire life. I’m confident that without him in my life I would still lack a deep understanding of true compassion, of accepting and embracing difference, of living each day to its very fullest.
When other people pity us or tell me how sorry they are I always want to say, “No, I am sorry that you will never know of all of amazing things that having a child with a disability can teach you!”
Kelle,
Just wanted to tell you that I’m so excited to be a small part of all the good that you are doing through your beautifully written words. Thanks for including me in that. I appreciate all the kind and encouraging words you’ve offered to me. Thank you!
I also want to say that the opportunity to connect with so many others because of similar struggles in life (and even some not-so-similar, yet we still relate because we’re both know what it’s like to look at something tough life hands us straight in the eye) have been literally breathtaking. So, I am thankful today. 🙂 Thanks for all you’re doing.
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I lost my mom to cancer when I was 21, and was still grieving and trying to figure it all out seven years later when I met my now husband and his son, who at the time was 5 years old. Because Anthony still has a very active mom in his life, and probably the grieving of my own my, I’ve always struggled with seeing myself as a ‘real mom’. I have had many identity crisis’ over what being a mom means; does it mean you have to give birth? No. Does it mean you have to be the only mom figure in a child’s life? No. And even though I knew this, in my heart I didn’t believe it for a long time. Then we found out that I couldn’t have children. Adoption was an obvious alternative for us (we are currently waiting to be placed with our child in the next couple of months!), but since making the decision to adopt, the battle inside my head emerged again and I asked myself over and over what does being a mom really mean? Who defines it? And what makes a person a mom? On and on the questions went. I can tell you now with confidence that it is me; I am a mom. I define what it means. You don’t need to give birth to a child to be a mom to them. What it does mean is that you need to love and accept and embrace. And that is the beauty that I have found in the unexpected.
Thanks for being such a great mom and amazing writer Kelle!
http://www.greystreetblog.blogspot.ca
Thank you for helping me Bloom & Grow!
I need/adore Nella’s shirt! That smile melts my heart!
When I said, “I don’t want prenatal testing because I wouldn’t do anything different,” what I meant was “I don’t want prenatal testing because I’m 29, pretty fit, and too young for any sort of issues in my pregnancy.”
And then the nuchal fold measurement was high.
And then I had a choice, I could wait seven long months, or I could have invasive prenatal testing and find out the truth.
Turns out, Ellie has Down syndrome. We got the testing, and had seven long months to wait. Seven long months to think about what matters, what we value, and how to love this child. Every single time we started to feel like we were “better,” we got more overwhelming news. She’d need open heart surgery. She’d need intestinal surgery at birth. She’d be in the NICU.
I know how the story is supposed to go, “We brought Ellie home and everything was great!” No, the story is “We finally brought Ellie home and were terrified about her heart, about how we would handle it, about how much she could fight.”
She had our hearts from day one. We knew she’d be the one to bring joy back to our lives to cover up the fear, and she did. The little girl who laughs easily, waves to everyone, hugs relentlessly, and smiles with her whole face brought us joy.
oh, and http://www.mystubbornmiss.com, but u know that!
So many beautiful and heart wrenching stories already shared. I am still on a journey, still waiting to fully bloom if you like, and awaiting the next chapter in our life, unexpected or not.
On a less serious note- I spy a Dig skirt!
Thank you Kelle, your story continues to resonate with so many of us, and perhaps unknowingly (for you) your big, loving Mama-heart has not only touched Brett, Lainey, Nella, Brandyn and Austyn, or your friends and family, but thousands of people whom you’ve never met. That’s pretty unexpected. Or maybe not.
Life always seemed to work out for me. I have a great husband, good job, a dog, a house, and was pregnant with the first great grandson of my family. It was perfect and he was going to be PERFECT. After an easy labor our son Donovan entered the world, legs and arms flailing and a tongue that was blowing bubbles and sticking out in a way that seemed odd to me. I remember wondering if that was normal but brushed it aside thinking that I’d never seen a brand new baby before. When our pediatrician said the words Down syndrome all I felt was shock, sadness, and shame. I blamed myself for his differences thinking that I had to have done something wrong. I had surely failed everyone. Everyone reassured me that I had done everything right but I couldn’t let go of that nagging feeling. Unfortunately there wasn’t much time to dwell as Donovan was taken by mercy flight due to trouble breathing. After sixteen days in Children’s Hospital of Buffalo I saw firsthand the power my son has over people. In the past year and a half I’ve gone through denial, depression, anger, more appointments than one should ever have to face, and the frightening day that I passed my son to a nurse to have a feeding tube placed. But then there was his first smile, the first time he clapped his hands, the overwhelming joy I felt when he sat up on his own or crawled like a sidewinder snake. He can pick up girlfriends wherever we go and watching people smile whenever he is around never gets old. Life may not be perfect but HE IS and I can’t wait to see how he changes other people’s perception of perfection as he has changed mine.
Caroline Miller
Kelle,
My moment of change would have to be the loss of my son at 14 months. His fraternal twin brother is 11. I’m surely blessed to have him! We lost his brother when they were toddlers, to the flu. This was 10 years ago. Flash forward, my marriage ended 4 years ago, and my son and I adopted 2 dogs and we live quite happily in an apt in NYC.
It’s not sunshine every day; but I feel like because of my loss I have a psycho-clear sense of perspective, and I know very well how precious life is, how lucky I am to have a child at home.
I guess this is why – even though I claim to be a cynical New Yorker – I have a very glass-half-full outlook on life. I went to a psychiatrist and he said he had never met anyone who managed to wear such dark glasses with a rose color tint at the same time. I was kind of proud. (:
I have things to work on; I developed some bad habits out of a desperate need for comfort; I have a chunk of weight to take off, some anxieties, and am probably way too comfortable being single. But your blog…and your book, have really woken me up. I want to embrace my life even more than I do now. I realize intellectually how great my life, my child are – but I want to go OUT there and grabe it by the horns (unicorn horns?). Thank you thank you.
Sarah in NYC x
Our story started 3 years ago when our then 3 year old daughter was diagnosed with a rare genetic disorder called Lebers Congenital Amaurosis. This diagnosis will cause her to go blind by the time she is a teenager without a cure. She is already legally blind – has 20/200 vision, no central vision at all, and is sensitive to light. She has learned to use a cane and is learning braille.
She is almost 6 years old, and the happiest kid. She doesn’t know any different, and that makes it easier.
We started a foundation about a year and a half ago, and have raised over $330,000 for her disease and a cure!
The unexpected came in the form of my doctor putting her hand on my leg and saying ‘oh honey, he doesn’t have any sperm’. That was the day my dreams, my plans, life as I knew, came crashing into a realty I did not ever expect. Or a reality I ever wanted. And the pain, oh the pain, I can relate to that pain you talk about Kelle. My pain may have come in a package a little different than yours, but the excruciating pain was the same. More a like than different, as you beautifully put it.
Many years passed until we were brought down a crazy road of adoption. But it wasn’t just any adoption, it was a different and unique form called embryo adoption. For over a year I struggled with what people would think of this decision.. what peoples reaction would be by us choosing this over other forms. But in the end, we knew we were called to go down this unfamiliar road. And in less than 2 months, my adopted children will be placed in my womb. They are mine now and their waiting will soon be over. I don’t know what will happen but I know this much… In the pain of the unexpected, amazing things happen.
Warmly, Katie L
PS-i’ve talked about my pain on my tiny little blog http://www.ohhappyday-katie.blogspot.com
PPS- Kelle, I started reading your blog after you posted Nella’s birth story 2 years ago. It has helped me embrace my pain and my unexpected. Thank you.
At one time my picket fence too was white. Today it stands weathered with shades of lavender, hot pink, orange, splashes of neon, and a few deep gauges here and there. At a young age of 32 I unfortunately have quite the story to tell.
It all started when I married my college sweetheart and that didn’t exactly turn out as it was in my dreams. He travelled for work tending to various other relations that he had along the way, while I stayed home to mother two little girls. We divorced and shortly there after I met the most beautiful man. He was damaged too at best. See he had just lost his 15 month old son who was killed when his ex-father-in-law ran over him in the drive way of his home.
He leaned on me, I leaned on him, and it turns out we were soul mates. Together we had a little girl named Olivia. Our home seemed as complete as it could be. Living in a small town with two exes however, proved to be too much. We chose to move away to escape and be closer to my husband’s family. My ex protested and the court was in his favor. He won custody of my two oldest daughters Natalie, 9 and Ellie Grace, 6. I had been a stay -at-home mom their entire lives. I nursed them, I gave birth to them, those were MY babies. The worst part, little Olivia, now 3, lost her sisters. She is lost. I am lost.
I don’t get to kiss them good night, see them off to school, or see them smile, or hear their laugh.
Bloom hit me hard. It relates to me in the sense that even though this past year has held the most unexpected turn of events, and some days I struggle to find a smile I still have to find beauty in the worst of days to stay strong for Olivia.
As I continue to fight the courts, I am finding out a whole lot about myself. As my husband knows from the loss of his son and I now too know, heartache changes you. It rips the soul out of you and then life forces you pick up the fragmented pieces off the ground.
I hope that one day my flower will bloom again. I will start the fertilization process this Mother’s Day when I spend it with all 3 of my beautiful little girls and cherish every single giggle.
Jennifer Dreblow
In November 2010, I learned that my mother had stage IV lung cancer. I quit my job to care for her and I am so glad that I did. Despite countless medical procedures and appointments, mom never once complained.
It was this same month that my brother and sister-in-law had their quadruplets. After five years of IVF treatments and seven miscarriages they finally found a surrogate. As soon the legal paperwork was completed my SIL became pregnant herself. She delivered a healthy little girl five days before her three brothers were born.
Mom wanted to see the quads baptized so we arranged our minister to come and do a bedside baptism as home. Mom smiled and said I am now at peace and died two months later on July 30th, 2011. Our life was like a Charles Dicken’s novel, “It was the best of times and the worst of times.” As difficult as that loss was, mom taught us to enjoy life and the importance of family.
Sadly, we lost my father on February 22, 2012. He was scuba diving and died of sudden cardiac death on the beach. The day he died my brother and I went to mom’s grave to let her know that dad was on her way to her. Suddenly, a hawk appeared above us and was then joined by another. They circled above us for a few moments. We looked at each and smiled and then they were both gone.
These devastating losses have taught me that life still goes on. It taught me to be PRESENT – because the moment guaranteed to you is right NOW. For some reason, I see things differently now. The sun shines brighter. The flowers BLOOM wider. The sea is more vibrant.
I know that those four babies and my four year-old WILL KNOW about their grandparents. Their legacy will live on and that to me is beautiful.
I chronicle my journey here:
http://theroadlesstraveledtoday.blogspot.com/
The story of my life right now is one that, a year ago, I thought was going to leave me an empty shell for eternity. Shortly before Mother’s Day 2011, my own mother (also my best friend) was diagnosed with a rare and aggressive cancer and given a six-months-to-live-at-best prognosis. I was five months pregnant and had just moved back to my hometown with my husband and our two daughters – all so our kids could get to know their grandmother.
The day the doctors gave the final prognosis, I was absolutely devastated. I was angry, hurt, in denial. I remember distinctly falling to my knees and begging God to spare her. I’m a young mother, and I REALLY couldn’t fathom losing my mentor, friend, mother all in one fell swoop. I honestly thought that I was going to die along with her, my heart broke so badly.
My mom died almost exactly 3 months to the day she was sentenced to six months maximum.Those months I spent with her were magical though, and I wouldn’t have traded them for anything.
The beauty I found in the unexpected was that found in precious time. Time is something we all have, yet most of us take it for granted. But in the end, if we’re lucky, time is all we’ve got left.
The final time I had with my mom was emotional, raw, and real. We got to say our “I love yous” and “goodbyes” and she even got to meet my son who was born two weeks before she died. And even though I miss her terribly every single day, I am so grateful for the beautiful gift of time that we were given.
The full post of that story is here: http://featheredfriendsy.com/?p=1604
Our story was written by the hands of our God…a story of perseverance, joy and painstaking heartbreak. After a marriage full of hate, control and adultery my husband and I found Jesus and our lives were turned around. We began living for others instead of for ourselves. We longed to love another and so began our journey to our daughter…Ellersley Grace. We tried to have a sweet baby for 3 years and finally with some fertility treatments we were pregnant. We were OVER THE MOON! Our families were over the moon, we had all been waiting for what seemed like an eternity to us. Long story very short, after a beautiful, healthy pregnancy I had a placental abruption at 7 months 1 week and 1 day. Our sweet Elle lost too much blood and passed away after 22 minutes of life outside of my belly. She was beautiful; perfect clear skin, my nose and my husband’s funny feet. She is ours and she is just gorgeous. Now, every day is full of learning how to live in the joy that she brought us for 7 months 1 week and 1 day. She has taught us so much about life; love each moment whether it’s good or bad because it is your life and it is to be lived to the FULLEST. She has taught us how to trust in a God who has the greatest and best plan for our life. She taught us how to love with reckless abandon and we will continue to do so until that day that we take our last breath and simultaneously see her gorgeous little face again…
Thank you for allowing me to share my story…you can read more if you would like @ our blog…www.lovealwaysleavesamark.blogspot.com
Nicki
Elle’s Mommy
When my husband and I decided to go the route of domestic adoption after five years of unexplained infertility I was determined not to let our social worker talk me into an open adoption. I knew it was becoming the norm. I knew that adoption counselors were trying to “push” it on people and I didn’t care. It wasn’t for me, I didn’t like it and I wasn’t going to do it.
And then we met our daughter’s birth parents and I knew again. I knew I’d been wrong. We were going to have an open adoption. There was no way around it. I fell instantly in love with them and the little girl they were willing to selflessly hand over to us to raise and care for and love like they knew they weren’t ready to do.
When our daughter was born, we cried with them in the hospital and hugged them and clasped their hands and they whispered,“This is right. She is your daughter. We want you to love her like crazy and raise an amazing little girl. We picked you to do this. We want this. It’s best.”
And it has been…….the best.
Now, three years later, our daughter’s birth mom comes to birthday parties, has us to her house to go swimming, and invites us over for dinner. I couldn’t imagine my life or my daughter’s without her in it.
I’m forever grateful that adoption brought me to that vulnerable place where I could admit I’d been wrong, where I could acknowledge that my thoughts and pre-conceived notions aren’t always right, and that I could experience the gift that birth mother’s give their children. I’m a mother because of my daughter’s first mother.
And that is an amazing thing.
-Maggie
apairofpinkshoes.com
Last August, as I was dishing up dinner to my 16 month old daughter Cassidy, I got the call. The biopsy I’d had the day before was bad news. My husband was out with work friends. I grabbed a notebook and wrote down words like “ductal carcinoma” and “mastectomy”. I finished feeding my girl, told the nurse I didn’t have any questions and I’d see her Monday. To say I was in shock is a huge understatement. No one in my family – grandparents, aunts, cousins – has ever had any kind of cancer. I had no risk factors (well, except the baby over age 35 which who knew was a risk factor). I had a little one – I couldn’t have cancer. But I made it through, largely due to Cassidy. Putting on a brave face for her made me brave. Cancer is awful and I’m changed forever physically & emotionally. But it made me live my life differently. I don’t stress at work . I try to live my life to the fullest because you never know when the unexpected will happen.
-Sheryl
http://iliveforweekends.blogspot.com/
That page in your book where you talked about your miscarriage before Nella came? That page right there was all the relation to my life I needed. Not because I had a miscarriage though, but because I never had anything. Not even the chance to experience life beginning inside me.
When you wrote that whether you want just one or one more… It is so true.
So my experience with not being able to get pregnant turn out to be the most beautiful heart break of my life. Exactly one month after I said “no more” to fertility treatments, we adopted the best thing to ever happen to me. He was so meant to be with us. And I have a two weeks notice credit card bill full of nursery items to prove it.
And now we have just adopted our second. And I can’t help but feel like I have arrived at exactly the place life always intended me to be.
Kortni
at http://www.loveisallyouneed.me
The old cliché that having a baby changes everything is completely true. It is also true that having a child with special needs changes everything as well. I can’t separate the changes of having a baby from the changes of having a baby with Down syndrome or the changes of having a baby with a series of congenital heart defects.
But when I hold my daughter in my arms, I am so thankful that we made all the sacrifices we did to get here. When she smiles at me, I am amazed that I can feel as deep and instinctual a love for another human being as I feel for Abigail, and I have never felt so trusted and so needed as when she falls asleep on my shoulder. This year has contained this darkest most depressing days of my life, but I would live through them all every year for the rest of my life if it meant giving life to this little girl. She makes this last year the best year of my entire life because it is the year that brought me her.
I know that any struggle we endure or sacrifice we make will not take away from the countless blessings that have been gifted to us. I know that open-heart surgery will never take away from the joy of hearing Abigail laugh when I give her a big, loud kiss on her chubby cheek. I know that five days in the PTCU will never make her excitement at learning how to sit up on her own any less triumphant.
I don’t want to mark my life by the difficult times, but by the happy ones. And since May 18, 2011, the hardships have been outnumbered.
-Jacqueline and Abigail Claire
http://journeynarrative.blogspot.com/
I just returned from dinner with friends, and I’m sitting here reading these stories, tears streaming. Thank you so much for sharing. We have so much to learn from each other.
Embracing a life unexpected.
When I was pregnant with my youngest I found out that I had a risk of her having Down Syndrome. I cried for 3 days and then something within me shifted. My husband and I decided against having the amniocentesis because the results would not change the fact that we were going to love her……extra chromosone or not. I researched about Down Syndrome and that same month Nella was born and I stumbled upon your blog. To say the least, it moved me. My daughter was not born with an extra chromosone but it she had been, it would have been OK. This changed me forever…..for the better. I am a more educated person about Down Syndrome, I sponser children through Reese’s Rainbow, and I look at people with special needs and their families with great compassion and admiration.
Having 2 kids 21 months apart was wonderful BUT so much harder than I had thought. I was on the Mirena (iud) only a year when I got pregnant for the third time. Shock. Fear! Have you read about what can happen when you get pregnant on the Mirena? Scary stuff. Doctors tried removing the iud but it is embedded in my uterus. Today I am 30 weeks along and having a difficult pregnancy but trying everyday to learn the lessons that are before me. Besides having the complications from the iud, I have some other medical problems going on but everyday I am thankful. I am embracing this new path…..for myself, for my family, for this miracle.
I don’t know what the future holds. Whatever it is, I hope I have the courage and optimism to keep walking the path and embrace every step.
Mama Nic
http://www.embracingalifeunexpected.blogspot.com
My grandma lost her battle with Alzheimer’s just two weeks before my daughter was born. While my grandma lay in her hospital bed in the living room dying, my grandpa pointed to my belly and said “one is going out, and we’re bringing a new one in.” I was 37 weeks pregnant and dealing with the emotional rollercoaster of losing one of the most important ladies in my life, and trying to be excited to meet our first baby.
I had dreamt about meeting Cameron – of holding her for the first time, of kissing her little cheeks and telling her I was her Mama and I would love her forever. But for two weeks prior to her arrival, I could have cared less about her coming. I wanted that excited emotion to be present in me, but it wasn’t. I remember my first night alone in the hospital after my family had left, and I sent my husband home so I could get some rest. The nurse wheeled Cameron in and I held her and just cried. But they weren’t tears of joy, but tears of sorrow. I wanted so badly for my grandma to meet her – even though I knew neither of them would ever remember that very moment. I wanted to love that baby. But at that very moment, it was terribly hard.
I like to think that Cameron was able to spend two weeks with my grandma in Heaven before she finally arrived. She got to meet the grandma we all knew and loved – the one who taught us that ‘counters were made for glasses, not for asses’ and that ‘I could wish in one hand and shit in the other and see which one filled up faster’ (Sorry for the language!)- not the grandma that Alzheimer’s had gotten the best of.
http://www.nicoledepies.com/2011/10/bittersweet.html
Happy Mother’s Day to you, Kelle, and to all of your readers!
I found my world crashing down around me when my husband of 10 years decided marriage just wasn’t for him anymore, leaving me to raise our two children (6 and 8 at the time) alone. Thankfully when my world was shattered I was able to piece it back together into another form…a healthy one. The three of us grew strong enough together to venture into the world of foster care. I wanted our family to be able to serve others and this was the perfect avenue for our family!
Our first placement was in 2010…a 1 year old and his 3 month old brother. What a blessing they have been to us! We decided after 9 months of caring for them that if they came up for adoption we would make them a permanent part of our family, and 2 days later we found out their mom was pregnant with brother #3. We brought him home from the hospital in April of 2011 and actually adopted the older two December of that year. We get to adopt brother #3 this month!
I could not see this wonderful blessing 7 years ago when my world seemingly fell to pieces, and I wouldn’t change what we went through. That hurt and turmoil grew a strong, loving family of three that has now grown into a family of 1 Mama and 5 kids. I am truly blessed!
So many stories so many wonderful mamas. what a great time to let everyone share stories! also, nellas hair is looking even blonder- they are both gorgeous.
My story:
I was 29 years old, had finished my masters, gotten married, landed a pharmaceutical sales job and was thrilled to find out I was pregnant. i had a little spotting early on and got scared i would lose the pregnancy (maybe it was a warning everything wasnt quite right) but my doctor said we had to let nature take its course that it was to early to do anything. later in the pregnancy I got tested to see if I was a carrier for CF and I had the triple screen and it came back positive for DS, I was shocked and wanted it confirned so I could be prepared (I am type A and would want everything set up and ready to go)I went to the high risk specialist and he tested me and said it was not DS but that the baby was small and he wanted to do further testing. we found out she had IUGR (intra-uterine growth restriction) and we didnt know if she would live. i was on bed rest for about a month, she came at 34 weeks and weiged 2.4 lbs, stayed in the hospital for 41 days and then came home smaller than most newborns. she is a true miracle but i was mad, i was so mad at myself, at God, i was jealous of my friends having healthy babies, i was angry i didnt get to bond with her like i needed to that i couldnt even hold her for a long time but i was blessed she didnt have any long term complications, we went to follow up clinics to be monitored to cerebral pausey etc we had therapists come work with her but she was okay she is now a healthy 4 year old. but sometimes to think of that time in my life still makes me cry its so hard. i have a blog but its private if you want an in depth (with pics) discription of my story I can give it to you or can open my blog just email me. Taylor mtaymitch@yahoo.com
2 days after your sweet Nella was born, my beautiful baby girl Isabelle was born. Taken away before I could even hold her, rushed to the Children’s Hospital for reasons we hadn’t even begun to imagine. A year of surgeries, doctor visits, therapies, and medical specialists, finally led us to the head of genetics at the children’s hosp. 1 week before her first birthday, she was diagnosed with Kabuki Syndrome, a rare genetic syndrome affecting 1 in 40,000 children and all my dreams and hopes for this being just a crazy year of random medical problems that she would outgrow, vanished. The doctor told me to let go of my expectations and dreams for her future and prepare that she would probably never do most of the things I had expected her to do. He said a lot to me that visit, things I was foolish enough to believe in those crushing first few days where I felt my world and all I had known came crashing down. Now, a year later, so much has changed. Now I see that my daughter’s story is not going to be the one that I had planned, but one so much greater and more beautiful and richer than I had imagined. Her path may not be what I envisioned, but it’s taken my family down a road filled with so many amazing people, families, support. After she was diagnosed, I found myself searching for support, and since Kabuki is so rare, affecting so few families, I found myself looking for support in the wider realm of families dealing with any sort of special needs. And I found people online, in our community, people who reminded me I was not alone, I was not the only mom going through this new journey and that remind me that we’re not alone on this road.
Friday, May 6th 2011 was the day we found out that our daughter, Harper Alice, most likely, had Down syndrome but definitely had an AV Canal heart defect. We decided to have an amniocentesis done to confirm Down syndrome but the heart defect was immediately evident on the ultrasound. The official confirmation of Down syndrome came the Tuesday after but, call it mother’s intuition, I knew that our daughter was going to have Down syndrome.The diagnosis of Down syndrome was something I could handle. I knew, first hand, how normal life can be for people with Ds but my major concern was her heart. She had OHS on Jan 4, 2012 and kicked it’s butt! She is a miracle, a blessing, and by far the coolest chick I know!
This blog and Bloom have brought me closer to myself, to Harper, but also my friends and family. You make life seem easy and for first time mama, I needed that!
Kaiti at http://smiletomyface.blogspot.com
Married with Children and Living with my Parents… My husband, myself and our 2 little girls are currently living in my parents basement (and have been for over a year) as a result of the combination of a very exciting opportunity and a downturn in the housing market. We are incredibly appreciative of our parents, but long to be on our own again. This experience has been been frustrating and challenging, but is has changed us for the better! We have a much deeper appreciation for the security, freedom, and lifestyle that we had before. We are stronger as a family. We realize that being together;just us, is much more important than any material thing. We now realize how truly great we had it before we moved…we were longing to move back home where we grew up in a “the grass is always greener” kind of way, but really we had everything we needed right in front of us and took it for granted a little more than we thought.
I am now happy to report that a little over a week ago, our house officially sold! We had to take a pretty hefty loss though, so we need to stay with my parents a bit longer to build funds for a down payment on “our” home! We have the chance to really appreciate our own space this time around!
Full story here…
http://definin9me.blogspot.com/2012/03/married-with-children-living-with-my.html
When I was younger, I always imagined myself in the future; how i’d have the perfect job, perfect husband, perfect house, perfect wardrobe, etc. I have none of those things (well, a perfect ALMOST husband but that’s besides the point) and I couldn’t be happier. I currently work at a daycare (hello, not my dream job) in an infant classroom and it could not be more rewarding. Some of the children come to me at 6 weeks old and I may spend more time with them than they do with their parents. I feel like a “second mother” to these sweet little babies. There are times throughout the day when I want to pull my hair out & just scream right along with them, but those are rare. I get to spend my entire day hugging babies, putting a smile on their face, watching them grow and learn how to do things on their own for the first time. I’ve seen many babies take their first steps and let me tell you, it NEVER gets old. The proud look on their faces, it melts my heart every time.
I grew up as the oldest of three; my brother is two years younger & my sister is five years younger. She also has Down Syndrome. She has taught me SO MUCH, how to be more patient, that life shouldn’t be taken too seriously, that you’re never too old for disney movies (The Lion King is her absolute FAVORITE,) that mid-april is a perfectly acceptable time to watch “The Santa Clause,” and the importance of family. Her favorite activity is “Girl’s Day,” where I usually take her out to lunch, take her shopping (where she really just likes to watch me try on clothes) and to the movies. These are my favorite days, where SHE teaches ME how to be a better sister and person. I never wished for a “normal” sister, I wouldn’t have it any other way.
This is more Harper’s story than my own. Last April 15 my big girl developed a fever and cough. “Just a virus,” they told us and sent us home with an antibiotic. The fever persisted and so did I. “She is not all right!” I demanded. Pneumonia. Hospital. Fairly typical until her lungs began filling up with fluid. We were rushed via ambulance to the closest children’s hospital is Shreveport, LA. You’ll have to read my blog to understand how bad the drive over was. I’ll just say the driver got fired after. A medical team was waiting on us – waiting to insert a tube into her lungs to drain the fluid that covered her entire right lung and half of the left. That explains why she was panting like a hot puppy. 450cc of murky yellow fluid drained from her tiny body. I watched her fight, coughing and trying to call for Mama, despite the breathing tube down her throat.
I prayed and begged God to let her live. Everyone kept saying, “She is going to be fine,” but I didn’t believe them. Sometimes bad things happen, even to sweet children, and we can’t guarantee “fine.” I told God that I loved and trusted Him, but I would be so angry if He called on her now. I barely slept for her 16 days in ICU. During that time they took her off the breathing machine, only to put her back on it a day later. Mama’s are made tough during times like that. I had to send my other daughter away with family so I could focus on keeping Harper alive. Like I had some kind of control?! I blogged through the entire ordeal to help me keep things straight, to inform family, and to call for prayer for Harper.
The entire episode lasted 55 days, four hospital visits at three different hospitals and no answers – no explanation. And that is when I learned that we aren’t guaranteed answers, I am not in control -at all, and that each day with my girls is a precious gift. I learned that faith doesn’t mean anything until it is tested. Love big and love today.
You inspire me, Kelle. Thank you!
Mandy Cauley
@cauleygirls
http://www.thecauleygirls.blogspot.com
kelle. no need for 300 words. cancer came quick and unexpectedly. it changed everything in literally a second. but we clung to our one hope and joy. this was not the end and we were not going to waste it. what if the worst happens? then what? well there you are…choosing to embrace and seek joy or fall apart. i did both. who would raise ava? could i handle loosing my hair? chemo? nope i could not handle it. it was too much. but we decided to seek joy and not waste our cancer…i am alive and a survivor and we are not wasting our life. thank kelle. http://www.libbyryder.blogspot.com
On Valentine’s Day of 2011 I found out I was pregnant with twins. I will never forget the day, because my heart shaped uterus framed the “gummy bear” looking babies so well in the ultrasound. They were born at 38 weeks via c-section and everything looked perfect. My 2.5 year old son referred to them as his “babes”. Madeline and McKinley left the hospital with me two days later. A week after birth McKinley began to cry the shrillest cry I had ever heard and she rarely stopped. We tried 3 different reflux medications to no avail. It was clear that something wasn’t right. She is 8 months old now and still has yet to reach a milestone and after an MRI, EEG and blood work, we are still searching for answers as to why she is so delayed. McKinley has all the symptoms of Cerebral Palsy, but no one is willing to give us the diagnosis because of her age. She has seen several specialist and is visited by 4 members of the Early Intervention team a week. McKinley has seen more pain and struggle in her short 8 months than I had in the 31 years before her birth.
My heart was broken when I finally accepted that she has special needs. I felt that I had failed her brother because I didn’t give him the perfect sister I had promised. I worried that her sister would always feel ashamed of her own accomplishments. I hurt for my husband who wants to fix everything. Mostly though, I was sad for myself. The identical twins I thought I was getting, their special bond, their ability to trick people by switching names, that wasn’t going to happen. I quit my job shortly after I accepted McKinleys differences and am now a full time mom.
It wasn’t until I read your book that I was able to put my pain away. I was finally able to see the spirit and hope in my baby girls smile, instead of always seeing what is “wrong”. I started taking the girls out in public, letting other people hold her, I stop apologizing and explaining McKinley to everyone. She has a lot of life to live and I need to stop writing her sob story. I am her advocate, her rock, her therapist, her mother and I have faith that she will bring love into the lives of so many!
I cannot thank you enough for every word in your book. It saved me.
Oh yeah, I got pregnant two days after we came home from the final hospital stay. Not planned! Thought I was done, couldn’t handle three. I was SO wrong and my Josephine Joy is just that – pure joy!
I have a second lease on life. Why? Because my daughter, Nava, miraculously survived and has had a complete recovery from a nearly catastrophic medical crisis. She was the one-in-a-million statistic who contracted a very rare secondary infection from medications to quell a colitis flare-up. On a ventilator in an induced coma for three months and then a steep climb towards regaining and relearning all her motor and bodily functions, I witnessed a miracle unfold before my eyes. As a result I have taken on life with a sense of urgency, actively engaging in the Now. Stepping out of my comfort zone on oh so many things, taking on new adventures and opportunities, finding all the ways To Do, as opposed to allowing the excuses to creep in to Not Do. From foster raising a puppy for the disabled to going on a Patch Adams clowning trip, to hiking in the Swiss Alps, to asking for what I want and more often than not, getting it, life is what we make of it. I’d need at least 5 lives to experience, learn and grow in all that’s out there. I have taken the miracle of my daughter’s life and built a wonderful life, rich with meaning, joy and gratitude.
My son Will has cerebral palsy and undergone an unfair number of surgeries for a five year old. During one hospitalization, he lay unconscious on a stark white bed and I could do nothing but stare at his hands. It struck me in that moment – his hands are beautiful. Hundreds of prick marks on the back of his hands from hundreds of blood draws. Clenched fists, one of thousands of unfair side effects of CP. Double jointed fingers which flex and strain as his determination pushes him to move beyond his disability. His hands are his story.
I am not a writer. But in that silent moment, as I held my breath and waited for him to wake, I took out a pen and wrote:
My Son’s Hands
My son’s hands show a map of his history
A tale of a baby born too early
Fuzzy, wrinkled and pink
With a strength and will to survive
Against a silent shielded bleed under the surface
And a fate unbeknownst
My son’s hands show his courage
A potentially crippling disability
Hands clenched at first with the tightest of grip
That slowly loosened over time with love
And started to touch things and explore the world
Amazing and wide and unexpected
My son’s hands show his future
Of a beautiful grown man
With children of his own
And a life we were afraid to think was possible
When those babies ask about his hands
My son will stand proudly and say
My hands have scars from needle pricks
IVs started and failed and started again
To help me stay alive and fight to be here today
Stretching and thriving, stronger to hold you
Tiny white dots on the backs of grown limber hands
That tell a tale, show a history, explain a courage
Amanda Slavik – proudest of moms
http://www.ncslaviks.blogspot.com
I have a second lease on life. Why? Because my daughter, Nava, miraculously survived and has had a complete recovery from a nearly catastrophic medical crisis. She was the one-in-a-million statistic who contracted a very rare secondary infection from medications to quell a colitis flare-up. On a ventilator in an induced coma for three months and then a steep climb towards regaining and relearning all her motor and bodily functions, I witnessed a miracle unfold before my eyes. As a result I have taken on life with a sense of urgency, actively engaging in the Now. Stepping out of my comfort zone on oh so many things, taking on new adventures and opportunities, finding all the ways To Do, as opposed to allowing the excuses to creep in to Not Do. From foster raising a puppy for the disabled to going on a Patch Adams clowning trip, to hiking in the Swiss Alps, to asking for what I want and more often than not, getting it, life is what we make of it. I’d need at least 5 lives to experience, learn and grow in all that’s out there. I have taken the miracle of my daughter’s life and built a wonderful life, rich with meaning, joy and gratitude.
Harriet Cabelly, Social Worker and Life Coach
December 27, 2007 rocked my world. I was home for Christmas from my second year of college and found my self at a ear, nose, and throat doctors office, nervous and pleading with God that “nothing was wrong”. The kind, seasoned doctor got on my level and looking into my eyes informed me that he had “no idea how you’ve lasted this long with out hearing aids”. At 20 years old I was diagnosed with genetic hearing loss that could leave me completely deaf. Through the tears I asked my mother to take me to my favorite beach. With the wind in my hair and tears dotting my journal, I wrote out of pain and conviction. That afternoon I knew I had a choice. I could become bitter and withdrawn, allowing my disability to define me, or I could continue to step out an live life in faith and hope knowing that no one really does know what the future holds. A little over four years later, I couldn’t have imagined this future. I currently work with children with “designer genes” and with Autism, and i started being blessed by these children the January after I found out about my loss. I’m so thankful for my hearing loss. It has forced me to grow in exponential ways, to see the beauty in brokenness, to be humble, to realize that asking for help is a sign of strength, not weakness, and to relate to the children I work with and their families in a way I never would have otherwise. So today, I am thankful for what my hearing loss has given me. I know that while motherhood will bring it’s own challenges and fears, I am equipped with something special, the gift of being different, embracing loss, and looking for the gifts in the struggle.
Elise
fromdullearstoadiscerningheart
I’ve been following your blog for only about a month. I do enjoy the beautiful pictures and your way with words. I will admit, I haven’t read Bloom, but it is in my plans.
My story doesn’t come with a birth; although that did occur in the midst of it. My story – well the part that I did not expect, or even want for my life – begins last August. My husband deployed to Afghanistan in May, about 3 weeks after we found out I was pregnant with our first child. I continued on throughout the summer, until the morning of August 14.
I’m a post partum nurse, and I was working nights while my husband was deployed. I figured we’d be able to use the extra money, and I don’t enjoy being at home alone at night anyway 🙂
Anyway, I got the phone call that every military wife dreads, saying that my husband had been injured, but was stable and “in good spirits.”
The long and short of it is; he is now a right below the knee amputee, and has limited use of his left hand due to finger damage. He has a skin graft on two fingers, and the inside of his left leg, and is missing half of his left bicep.
I quit my job, packed two suitcases and flew to Washington DC to be with him. After 8 months of rehab, we finally returned to Colorado where we were stationed – and where our house sat with everything in it collecting dust for those eight months.
I was 19 weeks pregnant, and I resumed my nurse duties, only with my husband, which is not something I ever thought I’d have to do. To give my 25 year old husband bed baths, and help him figure out which medications to take and when. Our son was born at the same hospital we lived at for 8 months. In fact, when I was in labor, I just walked over to the hospital.
To say this is not what I ever expected for our life is a huge understatement. We are learning how to navigate life with a handicapped adult, now, and that’s not something we thought we’d have to do until we moved in to a nursing home together.
I blogged about it throughout our journey – and I continue to blog as it helps me just process things. We are still early in our recovery, especially mentally. It is definitely not always politically correct, but my hope was that someone else out there going through what we went through, would be able to benefit from knowing they are not alone.
Today, we welcomed home a lot of the soldiers he was deployed with. My husband walked in with them, after greeting them getting off the plane. The smile on his face was priceless, and to see him walking in with everyone was not something we thought we’d see this soon after his injury. Yes, I was 100% jealous of every other wife in there welcoming their husband home, because I knew they were going home and getting back to their normal life. Our life is far from normal anymore.
Hopefully, one day it will be!
Sorry – I meant to leave my blog URL so you could see that I’m not making that up!
sumthnfoxy.blogspot.com
(I am aware that the username is a little juvenile – honestly, it was my old AIM screen name, back when people used that! I’m just not that blog savvy and can’t figure out how to change it without losing everything I’ve written!)
They say that if you want to make God laugh, make a plan. I had plans; big plans. It was the summer of 2010. I was 20 years old, I was in love, and I was getting ready to leave my small hometown in Michigan to attend GVSU. That’s when I was diagnosed with a Deep Vein Thrombosis (blood clot) in my left leg; a horrible monster that dwelled beneath my skin for almost a year. My journey was tough, but God knew that I was tougher. It made me realize how grateful I am for the people in my life. My amazing boyfriend, who stayed by my side during the hardest year of my life. He and I made that journey across the state and our love grew deeper, despite the challenges we faced. My amazing mother, who I called at 3am, begging her to make the pain go away while hoping she wouldn’t hear the tears fall down my face. My amazing family, who never gave up, even when I did, and of course, God. I finally got my answer, almost a year later: May-Thurner Syndrome, a rare but curable illness. My journey has introduced me to some amazing people. Dr. Larry Diaz, the only doctor that finally solved the puzzle; my real life Dr. Gregory House. Everyday people who would smile at me, not realizing that their smile gave me hope to continue fighting. The people who made it possible for me to attend my classes. Without them, there would be no story of triumph. I look at life differently now. I embrace every day as a miracle. The common, everyday things, that I used to take for granted are now things that are celebrated and I wouldn’t have it any other way.
Lindsay Draher
Please visit my blog to find out more about my story: http://princesslindsaymarie.blogspot.com/
Life has not turned out the way that I expected. I am not the person that I thought I would be. Sometimes I look at myself, at my life, and wonder who I am and how I came to be in this place. I once lived, what I thought, was the ideal life. We had four children, two girls, two boys… all healthy. We had a successful business, a new home, financial stability…life was good. My faith was strong but, I realize now, it had never been tested, not really.
Then, with the ringing of the telephone, life turned upside down. That phone call led to another son, through adoption, and opened the pages of our life to the world of disabilities. We never considered that we could have a child who would never walk or talk, but suddenly we had just that. And then…..another phone call…….another child ……and Down Syndrome entered into our life story. Somewhere along the way, my definition of ideal had changed because, while this wasn’t exactly what I envisioned, I was deliriously happy with my six children and wheelchairs and heart pacers.
When our beloved daughter, the one with an extra chromosome, was taken from us in one heartbeat, the world seemed to crumble around me. I hurt in a place so deep that I never knew existed before. The hurt continues and I have accepted that it will continue to hurt for all of time. Yet even in this, the unthinkable, I have found that joy and sorrow can reside together. Life has been brutally unfair, but I am better, not in spite of, but because of the storms. I have learned to give of myself more fully and to live for each moment. I have learned to simply “be” and that is truly a gift.
Karol
http://www.lovinglaynee.blogspot.com
http://www.theholmeshome8.blogspot.com
Due to my heart condition I was born knowing that life is not always perfect. Sometimes bad things happen and you are powerless to stop them. That doesn’t mean life can’t be good, it just means you might have to redefine what good means.
I was born with a rare congenital heart defect and had 5 heart surgeries before the age of 6. I was extremely lucky though, and have been able to live a full and mainly healthy life.
At the age of 26, after getting checked out by my cardiologist, I was given the go ahead to try for a baby. I was pregnant at the end of 2009. Things quickly went awry. I bled. A lot. I was put on bed rest at 11 weeks. I remember during this time reading your post about Nella’s birth. Crying because of the pain and beauty of it all. Hoping I would get to the beauty of life with my son after the difficulty and uncertainty that was his pregnancy. It wasn’t to be though. He was born in April 2010 at only 23 weeks. He died 54 minutes later in his daddy’s arms.
We grieved. Hard.
8 months later I was pregnant again. The placental complication that caused our son’s death was rare, unlikely to reoccur we were told. Until it did. It caused my water to break at 17 weeks with my daughter. Again we were advised to terminate due to poor prognosis.
I couldn’t do it. I had to keep going because I was her mom and couldn’t give up on her. I put myself on strict bed rest. I drank as much water as I could. I battled against the hopelessness that threatened to drag me under. For 15 weeks I fought to keep infection away and my daughter inside. I didn’t have much hope for a good outcome. Our son had died under the same circumstances, so why would this end any differently? I knew though that I wouldn’t have traded my time with him for anything, so if our daughter was to suffer the same fate, at least I could say I gave her everything I had.
This time, it was enough for her to survive. She was born in July 2011 at 32 weeks. She spent 7 weeks in the NICU and 12 more in a body cast to correct hip dysplasia caused by so many weeks with low amniotic fluid. She is now a happy health 10 month old and my hero. One day when she’s old enough to understand, I hope I’m hers.
I learned through all of this my heart is not weak like I have always been told. My heart is strong. Strong enough to keep going when all seems lost.
My baby girl! We were ready for her. Labor progressed way quicker than we expected with our first child (a total of 6 hours from first contraction to time she was born). We ended up having her at home without doctors, nurses, paramedics or any medical professionals. We had a very beautiful, screaming baby girl!
It was 10 months later when my husband and I were doing dishes and she was playing with her toys in the living room, in our sight. She crawled into the kitchen right under our black lab, she must have bumped him on his chest or his man part…. animalistic instinct must have prevailed, he bit her right on her face. As I bent over to pick her up screeching, my husband moved the dog. I just remember feeling my shirt become more and more wet; I knew it was blood. My husband looked at me and said “Jen she’s ok.” I yelled back at him “This (turned her around) is not ok.” She had blood covering her face, my shirt and dripping off us. It was so scary. A trip to the ER, CAT scan, MRI, X-ray, Plastic surgeon, general doctor, and a dozen or so nurses later, she was done. 14 stitches right above her left eye. A possible infection ended up at the doctor’s office 2 days later, to find out that we may have to go in for more testing. Ended up she was ok.
It was a very scary night for me and I will never take my baby for granted. She is the most precious gift I have ever been given. She melts my heart and makes me smile like no one else can, even when all I want to do is scream, cry and feel sorry for whom-ever.
veryweetdays.blogspot.com
Jen
My youngest daughter Marley was born with a very rare genetic disorder called Rhizomelic Chondrodysplasia Punctata or RCDP. RCDP is so rare that there are less than 100 children currently living with the disease. The statistics for RCDP are very grim. Almost all the children are born with cataracts and severe bone deformities. Most children die before they reach their 2nd birthday and if they do survive beyond that it is with profound mental and physical retardation.
You can’t tell by looking at her but Marley has had to fight for every milestone she has hit so far. From smiling to rolling over, to crawling and beyond everything in her first 2 years has been a struggle. As I watch her fight for the benchmarks that come so easily and naturally to most babies I am reminded daily of the sanctity and importance of each life no matter what the medical diagnosis may be. When Marley was first diagnosed we were told to take her home and put her on morphine and hospice because the likelihood of her surviving to a year old was very slim. Fortunately we chose not to listen to that Dr. and instead brought her home and enrolled her in every possible therapy we could. Over the course of her short life she has had hundreds of hours of therapy. From speech to vision to occupational and physical therapy she has done it all many times over. We of course first give thanks to God for Marley’s amazing progress but after that the credit goes to her phenomenal pediatrician and therapists. Marley is so blessed to be surrounded by a team of people who refuse to believe that a diagnosis is all that she is. They work tirelessly to make sure that she reaches every milestone.
Marley has broken all the rules for RCDP and is literally one in a million .We have no idea what her long term prognosis will be. But the great thing about that is that no one else knows either and that allows Marley to write her own story page by page.
I watch her light up every room that she enters . She’s absolutely magnetic and I can’t imagine any of our lives without her.
My son was put on this earth to change the world, one smile at a time. You see, Jack was born with Down syndrome six years ago, but more recently diagnosed with leukemia. He’s just a little boy, and cancer is not fair. But I think Jack wears it like a badge. It’s an opportunity for him to affect people in the most positive way. I see it in their faces as we buzz around the hospital in a little push go-cart. That smile starts in their eyes and spreads through their whole face. I see it in the mail he receives from all over the world, from complete strangers needing to reach out and wish him well. My little bald-headed boy helps people appreciate their lives a little more, makes parents squeeze their children tighter, and just plain makes people smile. I am so proud to be his mother.
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It was a Saturday, and I was pregnant. I was over the moon with excitement. It made me feel magical (unicorns ain’t got nothing on me). I ended up miscarrying on a random Tuesday morning.
I have been to dark places, but the loss of this baby sent me reeling. The most devastating part of miscarriage, is how hidden it is. How silent and isolating it is. I wanted to be somewhere, anywhere, other than where I was. Removed. From guilt and grief. I was empty. There was nothing. The complete absence of everything. It is heartbreaking to feel your own body changing, then changing again when life slips away. To hear that they can’t find a heartbeat. Allowing nature to take its course.
I know that many women, maybe even some of those reading this, have been to this place. It is dark, lonely and unbelievably sorrowful.
One day, it didn’t seem so hard to think about. It didn’t feel as raw. It was time to tell my story, to heal. I feel a little less fucked up just writing this down.
Looking back, I’m not quite sure who it was living my life. I was going through all the motions, but I don’t recognize myself.
I got pregnant again, and gave birth to another beautiful boy (my third!).
And to him I would say: I do not think that you will ever understand, but it should be said anyway, that you have been such a healing baby for me. That there was a part of me that was broken, and you came along and sealed each of my cracks. And maybe one day you will have a baby of you own and you will understand the sincerity with which I say thank you, thank you, thank you.
PKU (phenylketonuria) – three little letters that have changed my world, broke my heart and taught me so much about who I am and who I want to be. I’m Zay’s mom. And I want to be strong and amazing, for him, for our family, and for this world.
In the first years of my son’s life, we’ve been through it; hypothyroidism, breathing treatments, steroids, tubes, MRSA, you name it! Our little guy has broken us in as first time parents! But PKU is the one thing that I’m reminded of daily, even hourly.
Put into simple language, PKU means my son cannot eat meat, poultry, pork, seafood, dairy, eggs, beans, wheat, nuts…anything with protein. If he does eat these things – he becomes severely mentally handicapped. I’m challenged to be grateful we are fighting a diet issue, but also consistently reminded of how different our family is by these restrictions.
It seems easy. It’s just food. We make two dinners every night. We measure what he eats. We make his formula. We take blood samples each week to check levels. We visit doctors and dietitians. But we are constrained. If we leave the house, there is no spontaneity in our outings. We must plan all trips and be prepared to not run out of food.
Zay will forever live differently than his peers. Every birthday party, pizza party, daycare snack, school lunch, work luncheon, restaurant outing, and dinner party will require my son to have “different” food. Food is a piece of almost every celebration in our culture. But in most cases, my son won’t have a plate at the table. That is unless I have remembered to bring one with his special food.
And even if you tell people about PKU, more times than not they won’t remember or care. This is what I’ve learned. To care. Everyone has something, and we must take time to care for and love on others different than ourselves.
All in all, how content I am with going through this process each day. It means that I get to show my little boy that I love him in the simplest ways. And I will make his formula and food for the rest of my life if it is how my love is displayed best. He will know he is special. He will know he is loved. I will be sure of it!
Jackee Austerman
http://www.theaustermans.blogspot.com
Three hundred words or less… I’ll try to keep it short and to the point.
I grew up with divorced parents, as many of us have. My father eventually given many diagnoses, bipolar seeming to be the most frequently used. My mother never diagnosed, but the product of much abuse from her father on many levels, she struggled to cope with life to say the least.
I was the oldest of three girls and perhaps the most like my mother… strong-willed, outspoken but constantly trying to keep the waters (and my two younger sisters) calm before her tsunami of rage catapulted our direction. Our relationship was volatile, often destructive… but she was my mother. After many difficult years of growing up in a home where I was never allowed to be a kid, never allowed to be myself but only an extension of her, we somehow found an unexpected and indescribable peace… we became friends. We talked every day. She died just over a year later at the age of 40.
I sang at her funeral and didn’t cry again for almost two years.
I got married later that year and divorced soon after. I had dropped out of college, rarely ate anything, slipped into a depression that turns out had existed much longer than I ever realized.
I married again, graduated from nursing school and had my first child after five years of struggling to make my marriage work. Becoming a mother was the one situation in which the fear of failing overtook me. I was no longer smart enough to compensate for the many vulnerabilities, insecurities and my lack of sense of self and the superimposed postpartum depression nearly destroyed me and my marriage.
I began therapy and searched the many dark corners this depression had created from an age earlier than I can remember. The scabs became scars and the scars began to fade after two years and eight months of work that felt agonizing at times. My marriage has become something I have never experienced before and we had our second child last year, and then I was diagnosed with cancer. Nine months after diagnosis, the cancer does not scare me. I trust His plan for me and my family… my children. Before therapy, I lived my life in fear of the curve balls I might not see coming and subsequently, didn’t live. Now, glove in hand, I am ready for them… and enjoying the home runs in between.
So many more than 300 words. Thank you for the opportunity to share this story. My blog has not been updated in a while and like you, I use it therapeutically.
You are truly inspiring. Your book is so touching… it is strange to feel like you know someone you will likely never meet. Thank you for sharing your story, your life, yourself.
– Charissa
Thank you Kelle, for wanting to share in all of our stories. You are inspiring! Here goes mine:
I was married to my best friend, had a beautiful daughter, and a healthy second pregnancy. Life was perfect. But I had a nagging feeling that it was too good to be true.
And I was right. At 20 weeks gestation we found we’d never meet our younger daughter. We were devastated beyond anything I could comprehend, and having lost my mom 14 years prior, I thought I knew grief.
Pregnant again, we found out we were expecting twins. This time I was confident – no nagging feelings. I was wrong. At 26 weeks we very suddenly met our boys, clinging to life. But they fought, every single day for five months, until we were reunited at home.
I felt optimistic.
Then, one of our boys was diagnosed with cerebral palsy and that optimism was replaced with bitterness and negativity.
But we all had our health, so I tried to be grateful. That was until I was diagnosed with thyroid cancer. I healed and thought I was past it, until they recently found another lump.
So I cried and hated the world and asked “WHY US?”. But then I came out of the fog and had a realization. Yes, we had been through a lot. But instead of being defeated, I made a choice to be empowered. My family has overcome many challenges, but none of them have broken us. We can’t keep waiting for our luck to change because we need to actually live our life. So maybe things have been more difficult than I had imagined, but our life is filled with more love than I could have ever dreamed; that is a thing of beauty that I wouldn’t change.
Tracey Trousdell
http://trousdellfive.blogspot.com
My entire world came crashing down around me 6 months ago, when I suddenly became a single mother of two very young children. One night, last October, the police showed up at my home, after the neighbors heard my husband and I arguing. I have recently chosen to let go of the details of that night, and not to relive the pain that occurred. But that night was my wake up call. I knew, as I sat sobbing on my bathroom floor while giving my 7 month old baby a bath,with the police standing right behind me, and trying to just have a normal bedtime routine for my girls in the midst of all this chaos,that this situation was not OK anymore. It was so far beyond OK,and I knew in my gut that my marriage was over. The depths of my heart were crying out to me,“Enough!” My spirit had been slowly crumbling away for the past 3 years. My soul was aching for my truth to re-emerge. And I knew, without a doubt, that there was a better way of living, a better way of showing my girls the absolute joy and love that this world holds for them. My husband moved away a few weeks later, leaving me to take care of our daughters alone. I had no job, no money, and absolutely no idea how I was going to do this. All I knew in that moment, was that my girls don’t need a victim for a mother. They need the strong, healthy, confident, vibrant woman that I once was. They need an example of a mother who rises above life’s challenges, and who confidently navigates through the storms, trusting that light and love are always there if we’re willing to look for it, and that happiness and joy are choices. And I knew that to become that mother, I needed to shift my perspective, to change my actions, and to regain my sense of personal power. At the New Year I decided not to create a resolution, but to instead focus on a Guiding Word. Gratitude is my word for this year. And, so far, it has absolutely changed my life. By focusing on gratitude, I have been able to shift my perspective, and to see all the wonderful gifts that are hidden in life’s challenges. I now look at the “negative” parts of life as tools – necessary tools I need to help me learn and grow. I’m learning, through this, that what ultimately comes from choosing to be grateful during the hard times is more love. And love is what helps us weather the storms. It’s what makes it all worth it. It is not always easy, and I have days where I’m not sure I can make it out of bed, much less find things to be thankful for – but I always do, and it’s not just because the smiles and laughter of two spirited girls lures me out. It’s because the joy in my soul is still calling to me. This time it is saying “You can do this. You got this. The best is yet to come – trust me.”
Christina
singlemamabird.blogspot.com
I was 36 years old and had not met “Mr. Right” and so I decided to have a baby on my own. I found a wonderful donor and was blessed with a beautiful baby girl. I named her Fiona. She was perfect. Fiona’s first year was the happiest and most fulfilling of my life.
And then, at 13 months old, Fiona contracted virulent E. coli from an unknown source. She spent a month in the ICU, fighting for her life. She faced kidney failure, pneumonia, and seizures. The doctors told me she might have brain damage. I lived at the hospital 24-7, mostly alone, watching a machine breathe for my baby. I did not know what her future held or even if she had one.
Fiona lived. She sustained permanent kidney damage, but in all other ways recovered. Fiona is now an energetic and hilarious almost-three year old.
Exactly one year later I had another daughter. I named her Carys, which means “love.” Single parenting a toddler and a newborn, while recovering from an emergency c-section, was tough. But I knew it would get easier. And oh how I was blessed!
And then, at just two weeks old, Carys was diagnosed with permanent hearing loss. I was shocked, sad, exhausted, and completely pissed off. The next months included a whirlwind of medical tests, hearing aids, early intervention, and sign language.
We have had far more challenges than we deserve. Yes, it is hard. But through our challenges I maintain my faith. And my faith is simple. It says that “life is good.”
I choose gratitude. I have two inspiring and gorgeous girls who fill my heart. They love each other silly. We are strong and resilient. And we find joy every single day.
Life IS good.
-Claire
http://claireandfiona.blogspot.com
Your blog was my little secret for soo long! Although, not really, b/c I linked to you all the time and some of my friends also began reading your story. As strange as this sounds, your posts were some of the first positive things I had heard about motherhood. After reading your post, I was so inspired to be a better mother, any hint of baby blues or any sort of depression were erased! I was so glad that this secret got out and that your perspective is now being experienced by so many! I don’t have a story to share like all these moms. Mine is more of a private transformation. Thanks for continuing to share on this blog! I didn’t read all 100 comments, but I really tuned in to wifey’s story and to Amy Cappelini since our son deals with anxiety as well. Wishing you the best. These comments must be such a joy for you guys!
My story starts before I was born, my parents were drug addicts and alcoholics and I was born addicted to heroin and cocaine. My aunt took me in at 15 months. My mother died when I was 3 and I never saw my father again. At 11 I was raped by a friends uncle and I started cutting myself. The 11 years following that, I was in and out of mental hospitals with really horrible things happening. At age 22 I got pregnant. I decided to keep the baby and worked my butt off in therapy. Now my son 9 months and I have never been happier. I look for the good and reading your blog helps me to remember about all the good things and even to take time for myself. Thank you Kelle for allowing me and others to share our story and for sharing yours.
In 2009 I was engaged and planning my dream wedding when my world was rocked. My fiancé told me he had met someone else, moved out, cancelled our wedding and left me all alone 3000 miles from my family. I went crazy, drank, did prescription drugs, and other things I am not proud of. 6 months into my new lifestyle I got an email from a handsome disabled veteran raising a four year old on his own. The email asked me why we had never talked; I was intrigued and agreed to meet the handsome stranger. He told me his ex-wife had severely abused his daughter while he was deployed to Iraq and he came home injured, suffering from PTSD to a 10 month old little girl who had a severe lack of trust for adults and who cried all the time. My heart broke for them; I wanted to fix me and take care of them and be this child’s mama. Three weeks later he and his beautiful daughter were relocating to my town and we were getting married. We worked together to get the insurance to get our daughter the counseling and diagnosis she needs and found she suffers from an emotional disorder ; RAD, most often linked to the neglected orphans. She is a difficult child, has tantrums, screams, and hoards food but she cannot help it. She needed a mama to take care of her and nurture her and instead she was given a selfish woman who withheld food from her when she cried as an infant. People still stare, they call us bad parents, they think we should control our child, they say she is a brat but they don’t understand how hard she has had it, or the sacrifices we have made from her. 2 and a half years and a newborn daughter later I am so glad I met my handsome stranger and I feel like my life is worth it every time I hear that sad little girl I met call me Mommy.
Kyndle Newton
Sometimes someone comes along and shows you just how special life can be. It happened to us with the birth of our son December of 2000 he was our and still is our “bloom”.
After 16 years infertility 9 miscarriages, frustration, and heartache, we are living that dream we so desperately desired. Now we are simply “Mom and Dad”. And I couldn’t be happier – the joy we feel every single day just simply parenting our child is almost without words.
All this was attained through egg donation – was it scary? Yes, incredibly so. And overwhelming, and exciting, and amazing all wrapped up in one big package.
I am so thankful we took a leap of faith and jumped in with both foot, surged forward and never looked back.
I love our child so much sometimes I forget to breathe.
Because of our “bloom” I now help other women with their journey to motherhood through egg donation. And my garden is so full of beautiful blooms that I am often at a loss for words.
On September 9th, 2008, my husband and I shared our 8th wedding anniversary. On that day, we also were told that our precious angel we prayed for would be born with Spina Bifida. I can remember laying on the table for the ultrasound and the doctor became really quiet. I prayed for God to fill my mind with something beside the silence. The only thing i could focus on was “yea though i walk through the valley of the shadow of death, i will fear no evil”. I knew at that moment that he would be born with Spina Bifida but i also felt a peace that we would be okay. Spina Bifida is the most common disabling birth defect. doctors can tell you nothing about their abilities and quality of life before they are born. It is a big waiting game. Some children die at birth, some are wheelchair bound. I just remember begging God to let him live. And live he HAS! He is paralyzed from his knees down and WALKS! I never thought I would be screaming “Wyatt, slow down!”. He is an inspiration to so many people. Our life would have never been complete without him. Our “blooming” happens daily as we, as a family, accomplishes so much. I am blessed to be a mother! We do not look at others’ differences, he has taught us tolerance and true love. We love bigger and I am so happy God picked me.
Jenny
After hearing the news that our precious baby had a rare genetic disorder, might not walk or talk, might have organ failure, and that he would eventually lose his vision, I threw away any hopes of my son living the life I had dreamed of for him. The doctor told us not to expect a normal life for him and indeed, she was right. It’s so much better.
Marcus will be 5 next month, is talking up a storm, starting to take steps on his own, has a dashing sense of humor, is a musical genius, and seems to make every woman fall in love with him. And in me, I’ve noticed there is a contentment that only blooms in areas of my heart that have been tilled with despair. It’s amazing how the worst news of my life birthed the most gratitude I’d ever hold, although I didn’t know it at the time. And even though I still fear the future, I’ve learned that tomorrow is God’s business. My job is to be thankful for today because today, I have sweet, bright, joyful son who’s gifted us with his differentness and has opened our eyes to the way God so beautifully works in the unexpected trials of life.
Thank you for the opportunity to share our stories, and for sharing yours so beautifully. Seeing that suffering and sadness are a common thread that binds so many, makes me feel honored to be a part of the club.
Sue Lee
mrssuelee.blogspot.com
When I hit my teen years and my body began to change, I looked forward to when I would hit the mark of a woman…my period. I looked forward to buying supplies with my mom and looked even more forward to the day that my period would make it possible to have a child with my future husband.
At age 16, I still had not began my period. I was given the shocking and life changing news: I had no cervix or uterus. I would not ever have a period. My ovaries had stopped forming and would need to be removed, as they had also dropped in location. The worst part? Being told at age 16 that I would never carry a child. I would never be pregnant, never feel my baby move in my stomach…never give my future husband a child.
What followed was years of depression, self hate, pity, and later…drinking and an even deeper depression that made me contemplate suicide every single day.
I finally went to therapy and gained control of my life. I’m whole again. I love myself again. This is NOT the path I wanted for myself. At age 25, 9 years later, my heart still aches over not feeling like a woman..over knowing I will never be pregnant…over the years I spent hating myself.
I am married to an amazing man. I’m so thankful for him. And I’m thankful that I can love myself.
My husband and I got started with things a little late, having our first child together when I was 36. After a couple of years with our little munchkin, Kerr, and watching several friends expanding their families, the clock started ticking…again. John took a little convincing to go for number two, but a couple of glasses of wine and a presentation complete with posters, a pointer and Top Ten lists finally did the trick. A few months after that spectacle, I was pregnant. All was well. Early on, I had some freakouts. They were very specific, all regarding Down Syndrome. I even made lists of all of the women I could think of (celebrities and real people) who had had “healthy” babies over age 35. We declined any genetic testing – I just wanted to enjoy the pregnancy. Finally, after a fast, exhilarating, middle of the night labor (big brother took 33 1/2 hours to make his debut), we had a new, beautiful baby girl in our family. The next morning, Kaera and I were alone when the doctor came in for her exam. “Did you have any complications during your pregnancy?” “No. Well, some extra amniotic fluid, but it worked itself out.” “I would like to test your daughter for Down Syndrome.” Silence. Panic. That was the beginning of the most difficult day of my life. The tears that came over the following days and weeks finally gave way to acceptance, courage and overwhelming love for our little girl. Kaera kept proving everyone wrong, nursing like a champ, rocking open heart surgery last summer at six months old, and just staying strong. She is our miracle baby, and I am so happy that she and her “plus-one” chromosome came into our lives.
I’ve always wanted to be a momma, ever since I remember myself, that is the one thing I’ve wanted in my life. At age 25 I was told I wouldn’t be able to get pregnant naturally as I have been born with a hormonal disorder that has plagued the women in my family for generations. My own mother was a miracle baby conceived after 22 years of trying. At the age of 42, my grandmother got her wish… and thanks to the miracle of modern medicine, I got mine much sooner.
I went through 20 cycles of medical interventions to get my boys and then 16 weeks of bedrest. I gave birth prematurely to twin boys, one “normal” and one that was “not”. My son had stopped growing 4 weeks before he was delivered but oh my, that lobster red bundle had personality to spare, I can tell you that.
It wasn’t until he was around 20 months old that the words “special needs” started flying around. With zero help from family and friends, who refused to acknowledge there was something off with my baby, I researched and went to doctors’ appointments alone. I wanted to learn the name of my baby’s monster so I could battle it. In the end we found out there were more monsters: CP, SID, PDD-Nos, ADD… I think I took it all in stride during day time but was unable to sleep at night time. We live in a country where special needs children as institutionalized or kept at home. You do not see Down Syndrome kids on the street for example… ever. I battle the system daily. My sons are now 6 ½ and got to a mainstream school. John has an aide of course but he is doing amazingly well. I am humbled to say my son made me the person I am. For some it is not the “happily ever after” they imagined but for us, it is just perfect. I cannot imagine my son any other way and I do not want a change a thing… What I DO want to change is how the world sees him… because all *I* see, is the most beautiful child in the world… inside and out.
I was afraid. In some of my earliest childhood memories I remember being afraid. I would get consumed in my fears of mythical creatures or something more realistic like my parents dying and it was hard to escape. This pattern of fear continued into adulthood I especially was afraid of those I loved dying and after a miscarriage and a fearful but successful pregnancy it all came to a head with the birth of my first child. Within the first 48 hours I was crippled by fear, terrified that something would happen to her. I spent the first weeks of being a mother fighting off panic attacks. I sought out a counselor and that helped tremendously. She helped me get to the root of my fear. Which was that I was not in control of my life or the lives around me and this was what terrified me. With this knowledge I began to battle my fears better but it was not until seven months later with phone call informing me that my 20 year old brother, David had died while serving in Iraq that I had to go to war with my greatest fear. This was it, this was what I had always been afraid of and it was horrible, it was devastating, it was incredibly painful but it the midst of it something surprised me. What I could not see in all my years of imagining this sort of scenario was the hope. Even though the pain was excruciating there were flickers of hope in the darkness. Hope through friends that weeped with you, hope from strangers that rode American flag draped Harley’s to your brothers grave site, hope through living words from the Bible I believe in. One of the greatest places of hope was found in a little tiny bean of a baby that was growing inside of me, a little baby that we had only learned about a few days before. I actually spoke to my brother on the phone the night before he died and I told him about our new baby. I asked him not to tell a lot of people because it was early and I could miscarry but my wise little brother told me not to be afraid and that he knew the baby would be just fine. It was this baby 16 weeks later that we found out was a boy who had too much fluid on his brain and who might have a chromosomal disorder. The funny thing was this time I was not afraid, not like I had been in the past, losing my brother had shown me that even when our worst fears come true there is still hope. I clung to this as we waded the second half of our pregnancy and when the day arrived four weeks too early for my boy to be born and they took him to the NICU because he was not breathing well on his own I was not afraid and when they brought us the news that he had Down Syndrome I was not overcome by fear because I had HOPE. I was sad yes, anxious yes, even overwhelmed at times but not afraid, not like all the years before. God had used my brother to teach me that this life is too precious to waste it being afraid. I love these words from Corrie ten-Boom, “Worry does not empty tomorrow of its sorrow, it empties today of its strength, it does not enable us to escape evil. It makes us unfit to face evil when it comes. it is the interest you pay on trouble before it comes.” I now refuse to pay interest on tomorrows sorrows when we have so much hope and beauty to spend on our life today!
Thanks Kelle for letting us share our stories of Blooming. This was so good for me to write.
Rachel Baxter
http://thebaxternews.blogspot.com/
“So, here I am today, 6 weeks pregnant. I went to the doctor, she seemed very optimistic, but still decided to do an ultrasound to ease my worries. She gave me information on pregnancy and what to expect when you’re pregnant, and had me wait for the ultrasound room to become available. After the ultrasound, she sent me over to a radiologist office for a 2nd opinion. I knew the news was bad.”…”She said the sac is irregular and there are many clots forming in the uterus. She told me to prepare to miscarry.”…” I immediately realized this was an appointment I should not have gone to by myself. I thought I could handle any news and I thought I was prepared for bad news. I was wrong. So, I left the office, with a bag of information on pregnancy that I would no longer need, devastated and alone. Now, I am trying to come to terms with this.”
These were parts of a message I posted in a miscarriage support forum. I felt broken down. I begged and pleaded with God. I was heartbroken. I scheduled my D&C (surgical removal of pregnancy contents) for the following Tuesday. I arrived at the hospital, and was hooked up to the dreaded ultrasound machine to confirm my miscarriage.
This time, my husband by my side. The ultrasound tech moved the wand to the right, then to the left. She turned the screen towards us, and there it was…
A tiny heartbeat.
What I thought was the end, was actually a beautiful beginning.
We named him Andrew. That little heartbeat has changed my outlook on life. I no longer take my kids or life for granted. Life is precious. They are blessings. LiveForThoseMoments.com.
Kelle,
Bloom was wonderful! Congratulations! I cried and laughed through the entire book, smiling as the tears fell from my face onto the pages! Your words give me courage, enough to share my story.
My story is of my own struggles in life. I have trichotillomania. I am a puller, I pull out my hair. Tric is a form of OCD, a very sucky OCD if i may say so myself. I am 34 and have been living this with this 28 years. I used to say struggle, but No…. I LIVE with this. Cause I do live. It triggered during a very stressful time. I was in 4th grade and my parents were divorcing and to top it off this girl at school was giving me a really hard time, I think i just snapped, needing release and by pulling out my hair gave my that sweet release. I have tried to quit, endless visits to every Dr imaginable, prescriptions galore, to no avail I still pull. I used to pray that I could just be normal, like every other girl with pretty hair, shoot I would even take bad hair lol. But I guess that was not in the cards for me. I have had some unusual hair styles to try to hide the issue. I have worn wigs, even had a jerk pull it of in 6Th grade in front of the whole school. My most mortifying moment was when my 10 year old daughter asks me if she was going to have hair issues too, all i could say was I hope not but I would love you no matter what. I wear a hair weave , I “do my own hair” haha. It has taken many years to be comfortable within myself, to not care if someone stare or ask me if i wear a hair piece ( like it is their business anyway and rude ). My fave cousin once said ” The hair piece is for you, not the world, not your hiding!” I live by those words… I am a daughter, I am a wife, I am a mother, I am a friend and I am a Girl Scout Leader… My hair or lack of is not who I am, is Not what I define myself by… I really do think God had this in his plan for me, to make me stronger, to make me look for whats in ones soul, to not judge others and to just LOVE unconditional, like I want to be loved… I Dislike having TRIC, but I am a better person because of it. I am working on a Blog about my struggles and my triumphs. I really want to share my story with girls that are going through where I have been and let them know that they can live a wonderful life.
At 20 years old, I buried my first husband. I wanted to crawl in the casket with him. I didn’t think I could breathe without him.
We were rappelling together one hot August afternoon in Phoenix. He descended to be our safety at the bottom, but he never made it. His equipment malfunctioned and he fell an unknown distance. I rappelled down and administered CPR until Mountain Rescue arrived and transported him to the hospital. The Neurologist gave him a 0% chance of survival. He never regained consciousness…and I had to turn his life support off. He was only 21.
Because of this I learned things about myself I didn’t know. I am strong and capable. I did not want to be defined by one of my life’s trials. I wanted to be married again, to have children…to be successful and to truly enjoy my life.
I have now been a police officer for almost 10 years. I was able to graduate from the police academy, buy my own home and finish my degree on my own.
I (finally) met and married an amazing man. We had both been married before, but know we were meant to be together. Funny how things work themselves out.
We started trying for a baby immediately. After a year of negative results, we sought help. Our diagnosis: Male Factor infertility. It was a bad diagnosis. We started trying again with a few intrauterine inseminations. After those attempts failed, we had to figure out how to pay for InVitro. I was hesitant to spend a fortune on something as finicky as IVF, but we were at our limit…we needed to know where we stood. We needed to grieve and move forward, or get pregnant.
Every penny spent, every tear, every hour of sick time taken…and every shot I gave myself was so worth it! After nine months of bed rest, I gave birth to our son in February. He was a “fair to good” embryo…destined for the medical waste pile. I had to beg the doctor to do the transfer…better that embryo be “waste” inside of me than not try at all.
My son is a miracle…”fair to good” is absolute perfection. We have been so blessed. Becoming a mother is the best thing that has ever happened to me. I had no idea how much dimension life could have.
I truly love my life…all of it. I wouldn’t trade it for anyone else’s. I know my own struggles have made me who I am. They have helped me grow and given me hope. Although no two lives are the same, everyone has their own trials. They are what make us who we are…the good and the bad. Those moments in life that seem to be too much…those are the moments that define each of us.
Randi
You can follow our journey at http://projecthappilyeverafter.blogspot.com (I was doing my VERY best to keep this at the 300 word limit…which is impossible!! LOL So I condensed and condensed and condensed…hopefully my story still makes sense with so much taken out and brings hope to others. This life is amazing…the trials just make it interesting. You can read the entire story and more on my blog.)
Poppa Rik! Yes, you all are truly blessed by Nella. And, thru Kelle’s blog and photos, we are also blessed. To MELODIE, your story here in comments so touched me. Blessings to you. No, you ddint deserve it. Sadly, many vic’s of sexual abuse, when they tell a parent or someone else, are met with the accusation that they are making it up. I am sorry this happened to you, that all of this has happened to you. I pray for your healing and restoration..I love that word you used! Love from the Blog Mama~
Wow, this is a perfect day to share where I have found beauty in the unexpected because today we celebrate the second birthday of our sweet twin daughters, Amélie Hope & Elise Grace! Two years ago they arrived completely unexpectedly at 26 weeks weighing only 700g each (1.5 pounds). We were instantly thrown into the world of tiny babies battling for their lives against overwhelming odds. No promises were made, but grave faces told us only to hope for the best but to know that each day would be like riding a rollercoaster. As much as we wanted to avoid considering the worst possibilities for our tiny daughters, we knew throughout the following days and weeks we were riding extremely close to the line of death or permanent disabilities. But I made a choice not to dwell on the negative. We have a faith in our God and are sure that the prayers of hundreds around the world kept us in peace. But also in the day to day of walking through moments seeing the girls struggling to breathe or suffering through life-threatening infections, we knew they needed us to be there for them, to hold and touch them as often as we could, to whisper words of hope and dreams, to sing, to read stories and to let them know we were cheering them on towards growing bigger and stronger in the most loving environment we could possibly create. Making that choice not to dwell on the fearful, scary side of things has truly made a world of difference for us as a family. We celebrated every milestone, even every gram gained in weight. Today we have two extremely healthy, normal, joyful, life-loving little girls who are officially no longer babies. Life is beautiful and to be celebrated!
Remaliah Lacombe
http://lilygeorgie.blogspot.com/
Specific blog link:
http://lilygeorgie.blogspot.com/2012/05/two-years-old-today-story-of.html
I love your dad’s words 🙂
I would like to write a story which is far away from where most of you live, (I live in South Africa). A country which has many challenges, but where the people are immensely kind, helpful and generous. So this story is not my own, but my friends story that touched me so deeply, and I really want to tribute this to her.
I work as a doula,(birth support for families) and part of our training was to attend births to gain experience. I was lucky enough to attend the birth of my friends baby, and everything up until he was born, was perfectly healthy.
Beautiful Declan du Toit was born on the 14th of June, 2008.
When he was born, he had a big bruise on the side of his eye, which we thought was a direct consequence of the forceps that were used in the delivery.
Fast forward a larger bruised bump and many tests later, they were told the most devastating news a parent could hear – your child has cancer(this after only one week of having your first baby).
His mommy and daddy bravely fought this battle with him for 8 months,and he underwent many bouts of chemo, radiation and surgery. But he was diagnosed as terminal at just before 7 months old and went home to die in peace with his family. I remember going to visit him, thinking it would probably be the last time I ever saw him. His little body was covered in lumps and his breathing was strained.
I cannot imagine the heartache of knowing you have to say goodbye to your baby and there is nothing yo can do.
He passed away on the 8th of February 2009.
But most of all I felt a great need to tell this story, as Gillian and Daryl (Declan’s mom and dad), expressed their story in a blog, and in the process helped countless other children with cancer in the wake of Declan’s death.
In South Africa, there are many, many children whose parents do not have the finances for any medical help, small things, like a clean mattress to sleep on for the parents, whilst they lay next to their sick children in the hospital, food and generally financial support. It is hard enough having a sick baby, but being able to not pay bills, or have food on the table just adds to the stress. I admire my friend so much , as she has has selflessly taken on this task and greatly supports this cause till today. Here is her blog, that reflects her experiences, and she is currently writing a book to raise funds.
http://www.all-hands-on-dec.co.za/index.html
They have since had a healthy baby girl, Kyra and she brings them endless joy!
At Declan’s memorial, this was a poem his daddy wrote in memory of his son:
I found pure love the day you were born,
I promised to love you forever.
You taught me to love like never before.
I was to teach you all I know
You taught me everything I didn’t know
I planned to protect you
But you showed me peace and no reason to fear.
My life began over the day you were born
I promised to teach you to live a full life
You gave me new reasons to live
I vowed to make you laugh and smile
But you taught me the true meaning of joy.
I planned to raise you gentle but strong
You showed me true courage and strength.
I promised to guide and protect you my whole life long
Now you are the one watching over me
Until we meet again.
Thankyou and love reading your blog Kelle,
Inks
(Ingeborg Sonnichsen)
“Wait, you’re going to raise your children there?” asked many of our friends as we shared our plans to move our family of four from the Baltimore suburbs, to the island of Java. Since the day I met my husband our freshman year of college, two things became clear. One, I was madly in love with him and would follow him anywhere. Two, his calling and passion would likely lead us to community development work on the other side of the world. I reflected on how I assumed we would raise our two little girls close by family, and our community of friends, as I packed all our possessions, assorted dolls, baby strollers, and household goods into nine overstuffed suitcases. Our two tow headed daughters were two years old and eleven months. As our precious parents, siblings and close community of friends from our church gathered around us before departure, I wept and felt as if my heart was being ripped from my chest.
Far from all that was familiar, the four of us began our life in Indonesia. Our daughters became fluent in the language as they played alongside the neighborhood children, blonde heads in a sea of brown hair. We grew to love the people, food and culture. The pain of being at such a distance from family never lessened, but there grew a certain sweetness in our relationships with family and friends back home. We savored each moment with them during our trips back and forth. Fast forward twenty years later. Our daughters have married, and live not far from our parents in Pennsylvania. My husband and I (I’m still madly in love with him) live on Java, thankful for this unexpected calling that has brought such richness and joy to our lives.
While not anything special..I’m still learning to just love myself. But..it’s happening..and I’m happy! I absolutely adore Little Miss Nella and her shirt!
Our lives were forever changed on November 15, 2009 when we received the phone call that my brother had passed away at the age of 25. He left behind 2 small children, ages 6 and 1. He had struggled for many years with a prescription drug addiction (oxycontin) and we thought he had been doing better but the truth was he just hide his addiction very well. Once the autopsy reports came in we learned that he had died from an overdose and that is when more and more horrible details came to light about the life he had been secretly living. Our family was reeling from the news and trying to make sense of the world of drug abuse which we knew so little about. There was guilt for not doing enough and questioning what if on so many different levels. We found that many people saw our loss as less because of the cause of death and that is truly heartbreaking for families that have lost loved ones to drugs. It doesn’t change their loss at all…if anything it just adds so many more levels of grief and pain on top of it all.
If that wasn’t enough, the mother of his children was not able to care for their children. Her lifestyle involved drugs and lots if instability for the kids. Some of her actions also led her to be incarcerated for about 5 months about 2 years after my brother passed. Our family just knew the kids wouldn’t be safe in her care. After a lengthy process involving social services and the court system, my parents and I were able to obtain guardianship over the children. We are a very close family and thankfully we were able to make sure the children were cared for with very little disruption in their lives…or more than they had already experienced.
My house is full already with 3 small children, 5 year old twin girls, and a 3 year old little boy, but we welcomed my sweet niece who is 3 years old into our homes and hearts. She has been with us for 9 months now and we are hoping that she will remain with us forever. She is such an amazing blessing to us all. She not only looks just like her daddy but has many of his mannerisms and funny little traits as well. Each time she does something that her daddy always did, I just stop and smile up to the sky and say “very funny Rickey.” There has been so much pain through the last 3 years for our family but I think this experience has made us stronger in our faith and we are thankful even more for the many many blessings we have in our lives.
Thank you for sharing your story and for reminding us that the story of our lives may not play out the exact way we hoped but that doesn’t change the fact that it is still beautiful and so very very rich.
I feel like I’ve been dealing with “the unexpected” my entire life. I was adopted at a year old by my grandparents; dealt crazy family dynamics while trying to grow up; lost my father to cancer when I was only 17; and attempted to navigate the waters of being a teenager, college, finding myself without his guidance. But strangely, the most unexpected part of my life is something I entirely expected – motherhood.
I always knew I would be a mother – just not this mother. I was going to have a successful career, live in a big city, adopt children, and NOT have a husband. That was my crazy plan. Now, at age 28, I find myself a married mother of two who STAYS AT HOME. I had been raised to value education, find my calling, have a good career (that paid well) and here I am technically unemployed spending all day doing art projects, baking cookies, and changing diapers. But the truth is, it’s the hardest and most wonderful job ever I could have imagined.
There are still days, many of them at times, that I wonder how I got here or what I was thinking. I wonder where the real me is and if I miss my old self, job, dreams. And though I would never admit it to my husband, I do. I miss those dreams – until I realize what I have. I have play dates and time outs. I have family dates and spousal arguments. I have footprint art for every holiday and sleepless nights from teething. I have nothing that I planned and yet I have everything I want. But at least I listened to one thing my father taught me, I found my calling.
In September of 2009, my husband and I sold all of our belongings, minus what could fit in our car and moved to Alaska. Prior to moving to Alaska, we had secured jobs at a boarding school for children from Alaska villages. We could live on campus. Jobs and a place to live, all in one neat package. We were psyched to have such an amazing opportunity in our “wildest dreams” place to live.
As we got closer to Alaska, things turned out to not be as great as they seemed. We couldn’t get a hold of anyone at the school. We tried everything we could to alert them of our impending arrival, but got no response. When we made it to Alaska, we drove there only to find no staff there and it full of fire personnel fighting a nearby wildfire. We were told that school was closed indefinitely. There was no staff to help us; nobody had even thought to tell us that anything was even happening there.
This was a crushing blow. We had no place to live, we had a moderate amount of money, but nothing that could allow us to rework life on the fly. I left that school wondering how we were going to make it here in this wild land, all alone.
We ended up living in our car for over 2 weeks before we found temporary housing. Our money went very quickly for food and by the end of it all, we were pretty desperate.
I know that 2 weeks doesn’t sound like a lot to be homeless. But try that and being 4,000 miles from home and knowing that you have no plan, no money to go back home. It was scary. We were determine to live our dream. Some how, some way, we were going to find a way to make things work out. We prayed and prayed.
Eventually things started to fall into place. While we were in temporary housing, I sent out job applications to anywhere and everywhere. HUNDREDS.. I was lucky enough to quickly land a GREAT job and after a 2 month search.. we found a place of our own. Things really took off from there.
It hasn’t always been easy. We proved a lot of people wrong by staying here. 3 years later and 3 BITTERLY cold -50 winters, we have gone from having nothing to creating a home. I am forever amazed by that.
I used to laugh when my momma would tell me that “God’s plan is in everything..” she was so right. It is. You may not be able to see it right away, but it’s in there, waiting to be unlocked.
Beauty is in the essence of every breath you take and every moment your eyes touch. I have learned this the hard way. From the age of 16 to the age of 31 I lived with severe depression. I call it the dark period of my life and it came about after a traumatic experience, which would entail more than 300 words to talk about. Depression is a serious issue. I have heard many through the years say “Well, just cheer up” or “You are just being selfish”. However, now I see God granted me the struggle with depression for a larger purpose. I have now been a Registered Nurse for 14 years and never do I once think that a person can always battle their inner demons. Sometimes you need help. The darkness in my life took me down roads I had never thought were possible. I went through 3 suicide attempts. My last one being when my daughter was only 2 1/2-years-old, she is now 10. The grip of those dark fingers on your very spirit are so difficult to rid of. I tried medication for years, but it only numbed the person inside of me. Then in 2006 with the help of my incredible husband I went off of anti-depressants cold turkey and learned how to utilize and embrace the strong woman inside of me. In 2007 we welcomed our son into the world and in that same year I also lost one of the most important people in my life, my father. However, I never opened the door to depression again. There are times I hear it sneaking up and knocking, but I never let it in. After losing my father to cancer and winning the battle against depression I learned one great thing, life is beautiful and to see it you must first find the beauty within yourself. For years I thought I had no beauty, but now I not only see my beauty but also the beauty of this world. I utilize my career and my love for running to help others. Many times in my career I have seen loss, including the loss of children from cancer. I wanted to honor my father and I do just that by running to help raise money for childhood cancer research. I had never thought I would be on the path I am, but I feel I have been guided here. So every time I lace my shoes I take a deep breath in and remember where I came from. You see the road is very much a mirror of my life. As I run I see the many cracks I have jumped over and the many detours I have taken, but in the end I always ended up home. The unexpected beauty was found in those cracks and bumps because without them I would not be the woman I am today.
In July of last year, at 19 weeks into my first pregnancy we found out that we were at a much higher risk for having a child with DS. My heart broke. I cried so hard. I cried harder then when my own Mom passed away. I cried for our baby and how she wouldn’t experience what I had made up in my own mind for her own future. I cried because I need my own Mom there. Ever is 4 months old now. I wish I could go back in time to that day when we found out because I’d tell myself to stop crying because I’ve got it all wrong.
When I found out I was pregnant last year in December I was so excited, but petrified that I would not be a good mother. I was placed in DFS custody at 12 years of age, and moved from one set of grandparents to the other, I never really had a stable childhood, and from the time I graduated high school I was on my own. I didn’t know if I even knew what being a parent was.
I loved being pregnant even with high blood pressure, and gestational diabetes. I looked forward to labor and delivery; I knew it would bring me my baby. I ended up with an epidural, a raising temperature and blood pressure, and the baby was starting to get stressed, so my dreams of a “normal” birth ended with me going under for an emergency c-section. I had a very rough couple of months before I gave in and talked to the doctor, and was diagnosed with post partum depression. I felt so guilty that I didn’t love this time with my baby the way I thought I should.
But now I have a healthy almost 10 month old baby girl, who everyday reminds me what life is about. Everything is new and amazing to her, and the smallest things like a load of laundry spinning in the washing machine, and loading the dishwasher are so fun to her. I have learned that I don’t have to be my parents and that whatever our family ends up being is exactly what we were meant to be.
I am new to blogging, but this is the address tryingmyalmostbest.blogspot.com
Oh my. Such inspiring stories. I would love to share my story.
I am an only child. Born to older parents. I had a fantastic childhood with doting parents. I was always very close to my mama and thought she hung the moon. She was so different than the other mom’s I knew, much more relaxed and calm.
I grew up in a tiny town in Indiana and envisioned myself staying planted right where I was, thankyouverymuch.
When my boyfriend (now husband) took a job far far away in Virginia (!) I had a decision to make. I was finishing up my Masters degree and seriously spent that entire 6 months debating on whether or not to follow him down there. My mother informed me that I was going. End of discussion. I was getting out of the small space I knew and flying.
I was terrified.
The day my parents left me there I was a mess. However, within 6 weeks, I knew I had made the right decision. That my mama had been right, as she most often was. Chris and I, high school sweethearts, might not have made it if we hadn’t had that time together, just us, navigating this new world.
Fast forward 12 years. We now live in a different city, with a little girl that is the light of our lives. She is completely wonderful and our life is perfect.
Except for one little fact.
My mother died in 2003. She never got to know my girl and I struggle with that every single day of my life. It is so hard to be a mama without your mama. Especially a first time mama.
After Ellie was born was when I really dealt with the loss of her, even though it had been 3 years prior.
I will never forget the morning, when Ellie was days old and I had a question about her eating. I was exhausted and dealing with a pretty decent case of the baby blues. Without thinking I picked up the phone to call my mom.
Cause that’s what you do.
I dialed her number even, before I realized what I had done. I’ll never forget it. It was a rainy spring day and it was the first day Chris had gone back to work. I don’t know if I have ever felt more alone than I did in that moment. Here was this tiny being, looking up at me, trusting me to know what to do. And I didn’t. I just wanted MY mama.
There have been many moments like that since then. Seeing friends moms dote on their grandchildren, or listening as they complain about them overspoiling. Grandparent days at school and mother’s days.
Sigh.
I have learned alot in the 6 years I have been a mother.
I learned I am strong. I learned I am brave. I learned I can do it, can be a good mama with no real hands-on guidance.
Most importantly, I learned that family is what you want it to be. I have surrounded myself with friends that are, without a doubt, my family. I love them. And I need them. My village is huge.
Do I wish she were here?
Of course.
Cause nobody loves your kid like your mom does.
However, I am the mother, the person, I am today because of her, because of losing her. And I like me. And I think she would be proud.
Luckily, Ellie looks just like her. For this, I am extremely grateful. I think my mom picked her very favorite girl in heaven and sent her to me.
So she is here. In her own special way. Loving me through my girl.
Tia Davis,
Cleveland Ohio
If my life were a path, it would wind with twists and turns, sailing smoothly on a straight path for a while and then turn 180 degrees into something totally different. My life is not ideal to most. But it has worked for me. I have experienced being a young single mother (17 to be exact), battling a rare kidney disease at 19, the loss of a child at 22, twins at 24, bankruptcy at 31, and the loss of my beloved grandmother at 32. I have learned that fate doesn’t necessarily deal you the cards you think you deserve, or can even handle. But life, in my experience, has this funny way of working out. I had finally settled into and accepted my role as mother at 17, only to have that role altered at 19 to just trying to survive. The loss of my eldest daughter in 2001 and the subsequent unsuccessful attempts later left me reeling and thinking my oldest son would be an only child. Then my twins were born, giving us renewed hope. Things were great for several years. This is where the smooth, straight path gets incredibly hard to navigate. After bankruptcy and my grandmother’s passing, I am still trying to pick up the pieces and get back on the path. No one ever said it would be easy. But, I am blessed. I have a great husband, 3 great kids, my own special team of angels that I was blessed to have time on this earth with, although the time was far too limited, and life. I am alive…and free. I am still blooming, still learning. At 33, I can only keep on keepin’ on, for life, it is what it is.
We started the adoption process in February, in may we were chosen by a birth mom for her baby boy. We found out a few weeks before he was born that he may have down syndrome- they gave us a choice whether or not to proceed with the adoption- through our uncertainty in thinking that what if we couldn’t be what he needed, we said he was ours from the moment we got the call. We were in the room when he was born and from the moment our eyes met I knew we would do this together. He is a gift- and we make sure to tell him that everyday. I can’t believe I was chosen to be this precious boy’s momma!
Elizabeth Noel
I just realized I went way over 300 words. Really sorry 🙁
“She’s gone. Time of death, 1:55 p.m.” Those were the worst words I have ever heard. The moment the doctor told us our baby girl had slipped away after taking her off of life support. My name is Kristin and my life has been forever touched by a genetic disorder called Marfan syndrome. Here is my story.
Our daughter, Callie, was born on Jan. 27th, 2012 and after making one small tiny cry, her heart stopped beating. My husband, John, and I waited anxiously while doctors worked frantically to revive her, which they did after 15 long minutes during which Callie’s brain was not receiving oxygen. We were shocked to learn that, along with severe heart problems, Callie was also born with some physical abnormalities with her hands and feet. Her fingers and toes were long and slender. My pregnancy had been normal and ultrasounds had come back with no indication of anything wrong. The rest of this day and into the next were a blur involving teams of doctors, nurses, tubes, crazy big medical words, and a crazy ambulance ride so that I could be by my baby’s side. The medical staff was absolutely amazing and did everything they could to give Callie a fighting chance…but ultimately, she was just too sick and her heart was not strong enough. Callie’s brain had suffered so much damage from the lack of oxygen that she had no brain function. In our short time as parents, we had to make the hardest decision of our lives…to remove Callie from life support. It broke our hearts.
The doctors and nurses allowed us to have a celebration of life that day. They let us hold her and rock her, even with all of those tubes and cords. They let us give Callie her first bath and change her diaper. We dressed her up in a sunshiny yellow onesie and a beautiful white headband. We sang “You Are My Sunshine” to her and talked to her. We lived, we really lived…and so did Callie Marie, for 35 short hours. With our pastor by our side, John and I said “see ya later” (not good-bye) to our sweet girl as she passed peacefully in our arms on Jan. 28th.
We have since learned that Callie had the most severe form of Marfan syndrome, referred to by some as Neonatal Marfan Syndrome. This condition affects the connective tissues of the body and causes heart problems. John and I have had genetic testing done and were found to be free of the genetic mutation that caused Callie to have Marfans. This means that her mutation was spontaneous and random. I believe that God chose us to be Callie’s parents because He knew that we would be able to love her the way she needed to be loved. I am a “silver lining” person and I share Kelle’s affinity for yellow and a positive outlook. Callie’s death has made me realize so many things about life. That even the ugliest, awfulest things can be beautiful and that living in the moment is the only way to be. I have been blogging about my experiences with grief at oursunshineangel.wordpress.com and sharing with others my feelings of hope, despair, and love. Kelle, thank you for allowing me to share.
Wow, I love reading everyone’s stories – so emotional and inspiring!
Here’s mine:
The path I’m on that I never thought I’d experience is that of recovery from an eating disorder. In January 2011, when I was 17, I suddenly faced a wave of challenges – my Grandma’s death; my Mum’s breast cancer diagnosis and grueling treatment; a stressful time of applying to med school; exams and huge pressures from all directions – and I developed controlling my food and weight as a coping mechanism.
I started looking ill and stopped enjoying life, but the worst part was my state of emotional numbness– I could barely feel pain or cold any more, let alone joy or excitement. Going into recovery after being dragged to my GP by a friend, and losing my destructive ‘lifebelt’ was one of the hardest decisions I’ve ever made, but it’s also been one of the best. While grappling with my own thoughts and fighting the same battle each day, I learned about my own strength; how blessed I was by my support network and that God can do amazing things when I surrender. I was able to reach a stable point in time to stick to my gap year plans of going to South Africa, where I taught and fell deeply in love with a group of orphaned toddlers with foetal alcohol syndrome – for my time away, they were my motivation to keep fighting.
I’m still working towards full recovery after a recent relapse, and am likely to now be infertile, but I’ve learned that there is so much beauty in this world that living a half life will never be enough, and have been left with a very real understanding of mental illness. Now, when I start medical school this September, I know that I am equipped with a new kind of empathy for my future patients.
Life is taking me on a different path than I envisioned. I am getting divorced. Note I didn’t say “I’m getting a divorce” but “I am getting divorced.” My husband is chosing to divorce me. I haven’t yet seen the beauty, but I am hopeful that it is there, waiting to be found. I’m hopeful that there is still good out there for me. I’m hopeful.
Wow – so many amazing stories. Making me tear up as I read the comments!
2 years after enduring infertility and 2 miscarriages , we learned I had a blood clotting issue. 15 months after my last miscarriage, I finally got pregnant again. I was so estatic but my hopes were quickly dashed by news at 14 weeks that something was wrong. By no means was this precious little angel going to be my take home baby.
At 22 weeks we learned my little boy had multiple anomalies involving his brain, heart, kidney and cleft lip and palate. The docs were convinced he had a chromosomal disorder with out testing and asked me repeatedly to abort. I refused. I also was in danger due to polyhydrominos. My Husband at the time wasn’t supportive at all but I had support from my Mom and Brother Mark.
I was told at each appointment that Xander would not survive to term or even birth. But something kept telling me they were wrong. After feeling these docs weren’t going to help my son, I went to Hershey medical Center at 33 weeks. There, Those doctors did tests and found out Xander’s chromosomes were normal. After birth he was going to be fixed up and hopefully go home and live a normal life.
At 37 weeks, after 2 failed Bpps ,My beautiful little boy was born alive and tiny. At just 3 lbs 6 0z and 15 inches long. He had surgeries on his heart and brain and came through those wonderfully. On April 2nd 2002, Xander died from a Menningitis infection.
Tho devastated by his death, I was so proud of him to triumph past all the odds that were stacked against him. In 10 yrs i went through losses of my child, My Mom, my Brother, Abuse Divorce, and homelessness. BUT I also triumphed. I married my best friend Aaron and Am a Mother to 5 healthy children. Theres so much more but thats it in a nutshell. Life couldn’t be better now.
Your words are beautiful and so on point for me right now, every single one of them. I might just take a shot at your essay contest. 🙂
I dreamed my whole life of being a Mom. My husband and I tried for 2 years to get pregnant. We went through fertility treatments and months of disappointment. We finally got pregnant and had our first daughter on December 4, 2009. It was the best and worst day of my life. I knew something was wrong with her instantly. The nurses tried to reassure me but I could tell by their faces. They took her to the nursery and later several doctors came to me and told me that there was something wrong with her heart but they were unsure of what. She was flown to another hospital several hours away by jet. We found out that she had a severe congenital heart defect that would require numerous open heart surgeries. She is 2 ½ years old now. She has had 2 open heart surgeries and will have many more throughout her lifetime.
Little did I know that was just the beginning of my story….I amazingly got pregnant when my oldest daughter was 6 months old. I was excited and shocked. All the doctors told us not to worry because having another baby with a heart defect is rare. They sent me for a special ultrasound test when I was 25 weeks just to be safe. I remember the look on the doctor’s face and the feeling of my heart breaking. He said, “I’m sorry but your baby has a heart defect.” She was born March 23, 2011. She has since had one major open heart surgery that lasted 13 hours and more are required in the future.
My dream of being a Mother has come true. Things turned out a little different than I planned but I am a better person because of my precious girls. I love being their Mommy!
Jessica Farr
My son Henry was diagnosed with autism when he was almost 3. He’s now 4 and doing very well. I “knew” Henry had autism when I was pregnant. Call it “mother’s intuition”.
Opening our door and hearts to many different therapists was one of our first challenges. Reading your blog influenced my view of how I should react to having a “special needs” child.
Having a child with Down syndrome is very different than finding out your child has autism and yet there are similarities in the sense they both present challenges and the opportunity to grow as a parent/mother/person. I’ve been give a beautiful opportunity to rise above my innate selfishness and become a better person because of Henry. Sometimes I think God knew I needed this.
Thank you for your beautiful book. It’s tear stained pages will be shared with all my friends and family.
Own it. This was my mantra for many things in my teens and now into my 20’s. Need to get better grades? Own it, study harder. Want to be the kind of teacher that leaves a mark on the world? Own it, find ways to make memorable learning experiences for your students. Want to lose those last 5 pounds? Own it, put down the Twinkies.
When I was told my son Josh would be born with Down Syndrome, I returned to that mantra, “own it”. Yet I found it so much harder. All the other instances were things that I could CHANGE. I could make things different in my life if I wanted to, by simply taking on different actions. For the first time “owning it”, was not a different course of action I could take. I could only change my own attitude.
My son, faced a laundry list of health concerns, but that kid owned it. He smiled in the face of those doctors and giggled when they told us bad news. He forced me to realize that while change might be the answer to some of life problems, acceptance is also part of the solution.
I am grateful for him, for the challenges we face daily and for his and our families’ courage. “We own” that extra chromosome and have a better perspective on what truly matters in life because of him.
I love hearing how all these families have learned to “rock out” the trials and tribulations they have been dealt, because just as your book Bloom teaches us, attitude is everything.
I will be giving your book to my Mother for Mother’s Day…here is our story:
My Mother’s brother (my uncle) passed away five years ago at the age of forty-nine. Kevin had Down Syndrome. His life was incredibly full, loving and oh so interesting! Our lives revolved around Kevin. He was the centre of our small family – he was our sun.
I can almost picture my Mom nodding along with your book as she reads it. I know she will cry, because she’s been there too. She watched her little brother struggle and strive. She’s endured ignorance and come out triumphant on the other side because Kevin made her a better person. She has chosen to celebrate the beauty that Down Syndrome brings, not the hardships.
When you write about Nella, I feel as though I am reading about Kevin. Remember that controversial post you wrote about Nella growing up and remaining “child-like?” I smiled as I read it, because it’s true. Because our family had Kevin, the good times were never lacking! Uncle brought the fun with him wherever he went. Family barbeques would often erupt into karaoke/dance party/water fights. Just another weekend for us! Even well into our teen years and twenties, when it wasn’t always “cool” to hang out with your family, my brother and I always looked forward to family events, because of Kevin. He brought out our ‘inner child’ and we were better for it.
Kevin passed away when I was twenty-seven years old, and pregnant with my first child. My brother, cousin, and I (Kevin’s only nieces and nephew) performed the eulogy at his funeral. It was the hardest thing I have ever had to do. But it was an honour to have the privilege to say the words I said that day. I only wish my children could have had the opportunity to meet him and to live in his world, because it was a great place to be.
Lyndsay Doyle
http://www.thetestosterzone.wordpress.com
Bloom where you are planted:
It just so happens I was planted in ground that left me genetically disposed to a chemical imbalance in my brain that causes unbearable anxiety. In middle school when it began surfacing – the worst time of hormonal life – I got to be gap-toothed AND crazy. Oh, and my chest could’ve been confused with that of a boy. Fabulous.
I’ve since graduated college, lived on my own for a time, and gotten married. The anxiety abated for a time before it came back in full swing the spring of 2011. And I was worried, yes, but most of all I was angry. Angry that God let it come back. That *I* was the one that had to face every day with these debilitating thoughts that I knew were irrational yet couldn’t control.
During the beginning of 2012, I emotionally fell apart—the stronghold broke, and I didn’t stop crying for a week. Family problems tied in, and I’d lie in bed at night just haunted in my mind. The worst panic attacks have happened at night. It’d be no surprise then that I most felt connected to you as I read how you battled during that first night after Nella was born.
I realize now how much I was actually grieving for myself and my life I imagined: how my marriage would be different and day-to-days would change. In our stories, there is a time for a grief. To be sad because our dreams aren’t exactly what we pictured. But I also see now how “different” didn’t have to mean “bad.” My husband and I have battled through the trenches in our first year of marriage TOGETHER and come out stronger: emotionally tied together and intimately knowing each other’s hearts. We’ve gained what some others can’t simply because we lived through what we had to. And for that I am thankful.
Brennigan
http://www.bg–photography.blogspot.com/ (personal and business in one)
P.S. By the way, I’m from Holland (Michigan). While its not Italy, it is BEAUTIFUL here. The fields of tulips and the gorgeous lakeshore. Winter wonderlands with sleigh rides. And autumn leaves that leave you breathless. You’re a Michigander at heart…you would know. ☺
Kelle,
Eight years ago my world collapsed when I heard the words, “Your son has autism” and I, too, began the grieving for the son and the life I thought we’d have. But I’m not sharing that story today, although it’s beautiful and wonderful.
It’s almost been a year since the Layoff Fairy arrived with no warning or severance. Our family has spent the last year in survival mode, living off our food storage and cutting out the few simple perks we enjoyed. I really hoped – and believed – that by this one year anniversary, everything would be back to normal and our family could start living again.
Apparently not.
In the last few months, our family has moved from unemployed to underemployed, leaving us still short 50% of our previous income and with most of the challenges we’ve had all year. For whatever reason, the Lord still has lessons for our family to learn from this experience and so we stay.
And while I can’t change much of our situation, I can change my attitude and outlook.
I can choose…
to have a happy, full life for me and my family right now instead waiting for normal return.
I can choose …
to give thanks for what I have and and trust that the Lord has blessed me the the talent and strength to rock what I got.
I can choose…
to face this next year or two or ten and see this unwelcomed change in our family’s fortunes as our greatest adventure yet.
I Choose To Thrive.
I began writing and blogging to remind myself just how blessed I really am, that necessity really is the mother of invention and that not being able to run to the store and buy something new and full price may just be the best thing to ever happened.
~ Nike (Neeka)
http://choosetothrive.blogspot.com
http://tinyurl.com/thrivestory
(And thank you again for the chance to chat via Skype and for letting Nella tag along!)
Growing up I had dreams of living in a home with my tall, dark, and handsome husband that would circle fragrances of roasts and children’s laughter each night when we both got home from our very successful careers. I dreamed of playing in the front yard with our babies while our dogs napped lazily in the sun and being so utterly happy to be a family; to be a mother and a wife.
When I married my husband, this dream I had spent years perfecting, was quickly starting to unravel. The man I chose to spend my life with, have children with, already was married to the United States. As a Senior Airman in the Air Force I soon realized I would always be second, along with all my hopes and dreams of our life together.
I was diagnosed with Hyperemesis Graviderum in my first pregnancy and I spent several weeks in the hospital, alone, trying to be brave each time a nurse asked if my husband would be coming soon. While my husband made it home for the delivery, he left quickly after, and I’ll never forget sitting in the living room, holding my new precious daughter, sobbing, wondering how In the hell I was going to do this by myself.
2 years later, we are on the downhill slope. My husband will be home, for good, very soon. After 1,324 days apart, my bed will no longer be cold when I roll over the morning, I’ll never have to struggle to answer my daughter’s questions of where Daddy is, and we can start rebuilding dreams.
I am a proud military spouse, and while my dreams have gradually been replaced with just the immense desire to be together, I still have my ultimate dream; a family.
Our Journey has been a long one. My husband and I started dating in March of 2003, we were engaged in May of 2005 and married in April 2006. We always knew we wanted children. I have loved little ones since I was little, always pretending to be a mama, and hogging all the littles in the family as they were born. In January 2007 we decided to start a family, and to our surprise, I found out I was pregnant on our 1 year wedding anniversary. We lost that baby a week later….this was just the beginning of a road we never thought we would travel, a road with a lot of bumps and road blocks. Since then, we have continued trying to build our family and since then we have become pregnant 8 more times and lost 8 more babies (7 of them, gender unknown, for unknown reasons, and one, our Daughter, Kaylee Faith, due to unbalanced chromosomes). We have been poked and prodded and tested for different things, more times than some are in there lifetime. Never in our whole lives did we think we would be one of those married couples who long deeply for a child, get so close and yet so far away. The past 5 years have been heart wrenching, but over time I have learned so much. Like how to lean more on God, how to hand over my life to him and let him show me the way instead of trying to navigate myself. We still don’t have that precious miracle we are longing to hold in our arms, but we have a deeper understanding of many things, a stronger trust and relationship in God, the much needed strength we didn’t have in the beginning (which we owe all to God) and definitely more patience. Life has taken us down a path not expected, but we have found beauty in it. We thank God for allowing us the time, although short, with each of our precious babies, and to quote the song by Selah called “I will carry you”, ” I will carry you, while your heart beats here, long beyond the empty cradle, through the coming years. I will carry you, all my life, I will Praise the one whose chosen me, to carry you”. We have Faith that if it is Gods plan for us, we will someday soon have our little Miracle. If one door closes, another opens.
My blog: http://gray-baby.blogspot.com/
Thank you for sharing your story with us all.
~Erika
Our second child Benen Maxwell was born, an emergency c-section done when Benen was three months premature. The day I remember most was the three month ultrasound. Multiple problems were found, one abdominal defect and two heart defects. Even worse our baby could have a fatal chromosomal abnormality. Could I continue a pregnancy knowing the baby was going to pass after birth?
It was a hard every day feeling my baby inside and not knowing what was too come. We decided to have faith that everything would work out. Due to complications and stress, labor started early and Benen came. Benen spent five months in the NICU where we almost lost him. The abdominal defect was minimal and no heart defects but Benen did need a trach and feeding tube. Nothing anyone expected.
We spent the first 18 months of Benen life’s being nurses, keeping him alive. Everyday wondering how and if we would make it through. Benen was medically fragile, we had to teach him to eat, and all the other things that came so easily with Benen’s sister. People kept asking how do you do this? I would say ‘you do what you have to do; you don’t get a choice.’ But inside I just wanted to be a mother to Benen, not his nurse.
During Benen’s time in the NICU, I read Kelle’s article in Parenting magazine about Nella’s birth, I tore it out and kept it. Mostly I remember – ‘Love me. Love me. I know I am not what you expected but oh please love me.’ I felt the exact same thing. I loved Benen but this love was difficult. I wanted the easy path I had before. Enjoying the ride that came so naturally and easy the first time. Could I really do this? I could and did.
The first year and a half of Benen’s life was dark but we both are blooming now. Needless to say Benen is not a two year old that most would think of. I have learned to let go, be in the moment with Benen’s small accomplishments, and not worry about the future. Love and accept him and me for who we are. Not measure us against what is ‘typical, regular, normal’ for the rest of the world. He is our miracle to love.
My story began in 1999. I had a clear path, I had direction and I knew where I was headed. Life then threw a curve ball and I have been on the “scenic road” ever since. I was diagnosed with an AVM on my left frontal lobe. I was told that it would be extremely dangerous for me to become pregnant, until the mass was gone. Over the next 9 years, I had various treatments, including radiation to make the mass go away. In 2008 I was tired of waiting and wanted to have the family that I always dreamed about. We thought long and hard and decided to take the unpredictable route of gestational surrogacy. It was the hardest decision that I have ever made, to let go of the possibility of carrying my own child and place that responsibility with someone else. We started that journey in the summer of 2008. After one failed and devastating attempt, we tried again. I knew in my heart that if this next one did not work, I could not do it again. The emotional toll was so hard. We tried again in the winter of 2009 and we thrilled to find out we were expecting twins. My amazing, wonderful and so very much wanted twin girls were born in October 2009 and my life has never been the same. They were born almost 10 years to the day of my initial diagnosis. The road has not always been fun, and my life did not go as expected, but the scenic road has given me two of the most amazing little girls that a mom could ever ask for.
Kelle ~ I love reading your blogs..my story began on July 23, 1968, when my brother Raymond was born. I was not a year old myself, when he came into the world and my parents were told he would not live to be 1 year old. Back then, the children would be placed in homes. My mom would not have that for any child of hers and she loving took care of all his needs at home until he left the world on September 27, 1972, over 4 years and 2 months later. See what a Mother’s love can do? Having him in our lives have blessed us in many ways. When I see a Down’s child, I see my brother. They can hug like no other! Unconditional love, is all you feel.
First, what an inspiring post. I come to your blog every day for some great pick me ups.
My daughter is 5 years old and has seen too much in her little life. It all started when she went to a school that looked like a nice, lovely, organic, “green” daycare center, located just off of a city park where she’d enjoy her afternoons. It wasn’t until a year into it, I realized something was so wrong. She had her childhood taken from her by a 23 year old man that I’m sure had his childhood taken from him. She was abused in ways that can’t be expressed with words. Our lives started over from that moment. We’ve had to figure out what to do when a parents worst nightmare is right before their eyes. On June 8th, it will be 2 years since the most horrible days of her life and we will all celebrate the new life we were given. She can’t be in big groups of people, I suppose she is scared he’ll be there. She can’t control some of her anger. She can’t help being so emotional. But… she is learning from it, she is growing from it. She is owning her story. I’m owning our story. She will become an amazing, smart, lovely little girl that stands up and helps other children that this has happened to. We have learned that this is not the end of our lives but, the begining. We will, laugh, we will cry, we will be mad, we will be sad… at the end of the day, we have eachother and we have our story. She will grow and she will learn. She will know, that the best it yet to come.
My story of growth and discovery has unfolded over the past 8 years, since the birth of our second son, Will. From about the time he was 6 months old, it became clear that he was different from other little ones we knew, and while I loved my sweet boy fiercely, his intense personality, endless energy, and deep emotional sensitivity made for a challenging and frustrating life in his early years. I worried about him and about my inability to really “get” him; I feared that maybe there was something “wrong” with him that I didn’t know how to fix, and there were many times that I felt I was failing him as a mom.
We have since learned that Will is intellectually gifted, and that he experiences life in a way that is deeper and more beautiful, but also frustrating and more anxiety-provoking, than many people can understand. I have taken great joy in learning everything I can about my Will in the context of these new puzzle pieces we found, and today I feel like I can understand and support him better as he makes his way in his big, exciting world. This is a reflection I wrote almost two years ago, when we first started down the path of assessments. It was a time of epiphany for me; I felt I had finally caught a glimpse of the beauty within my challenging little boy: http://pocketfulsoftreasure.blogspot.ca/2010/09/little-boy-big-life.html
Kelle, you continue to inspire me and so many others daily with your life story. Thank you for sharing your beautiful family and your thoughts and feelings with us all.
Lisa
Dear Kelle,
I’ve attached a letter I wrote to friends that donated to my team for the MS Society. On Sunday, my mom’s walking ability bloomed and she walked two miles. This is farther than she’s walked in over 10 years. I hope you enjoy….
May 7, 2012
Dear Friends,
I’d like to start by expressing my gratitude to you for your support of the Multiple Sclerosis Society. By donating to the MS Walk, you are supporting numerous programs that provide housing, research, and general support to those affected by MS, including my mom.
About seventeen years ago, my mom noticed she was having difficulty walking and was diagnosed with ‘foot drop’. As her foot drop worsened, she continued to search for answers, and was diagnosed with MS. As with any disease, it can be a helpless feeling to know you can’t simply ‘fight it off’.
As a way to fight back, I decided to lead a team for the MS Walk. On Sunday, May 6th, my team participated in its seventh MS Walk.
This year’s MS Walk?….What a walk it was.
Seven years ago, I launched Team MoMS (We Walk for Mothers with Multiple Sclerosis) as a way to be proactive in the fight against MS. Over the years, we have raised almost $40,000 for the MS Society, thanks to amazing friends and supporters like you.
I began walking for MS with a singular goal in mind: To walk for my mom so that one day, she could walk with me.
Well, friends, it happened.
On January 22, 2010, the FDA approved a drug called Ampyra. Ampyra is a drug that helps patients with MS improve their ability to walk. Mom began taking it about a year ago, and thank the heavens, she was one of the percentage that it worked for.
Over the past year, we’ve celebrated many walking successes, from longer dog walks to easier shopping trips.
And we just had a major celebration.
My mom walked the MS Walk with me.
Over two miles walked.
And what a walk it was.
I thank you all for your support and hope you are able to celebrate in this victory with us. From the bottom of our hearts, we thank you.
With love,
Krissy
Before I became a wife and even before I became a mother myself, I became a girlfriend to a man with twin girls. A man to whom I dated, had parted ways with for some time and come back to again to only find out had conceived children with another woman. The matter of fact truth was that I was entering a ‘world’ or life that was completely unknown to either of us, but the man and I joined forces and trudged forward, full steam ahead.
This was a very challenging time, not only for the man and I, but for the twins’ mother. We all were adjusting to the transition. But where I found the most difficulties is how I would be at ‘mothering’ two children that had no biological ties to myself. But something just clicked. The girls and I clicked. It just worked. & as much of a sticky situation I had placed myself in, because of the love I had for my now husband, my heart fell in love with two girls that been placed in my life for a reason.
To say I found beauty in the unexpected would be an understatement. I found love. I found family. I found the life I was meant to have. & for that, I will be forever grateful.
Always captivated by your words, Kelle. And honored just to share a tiny glimpse of how your book has resonated with me!
Strength Blooms
If it were possible to change the past, my list of things to undo would start with the names of people I love who have been taken from this world much too soon.
But it’s not possible. And because of it, I’ve spent a great deal of my still-young life learning to find the beauty in pain.
In Bloom, Kelle captured the essence of a sentiment that, for years, I’ve been trying to define: that the challenges in life are what mold our character into something strong, resilient, and beautiful.
I’ve found that in the hardest of times you learn the biggest of lessons, witness the greatest of graces. And grief is very much that way. From the moment you lose someone you love you begin a lifelong journey, one full of paradoxical moments of peace, comfort, disbelief, and devastation.
But we go on because we have to. We learn to live with the sadness, to accept that as much as our loved ones were a part of our lives, the grief will be, too. And suddenly, strength appears. It blooms. It reminds us of the power of memories. It leads us to gifts of faith and hope. And it urges us to witness the beauty of life around us—to do great things with the life we are given if for no better reason than to honor of the lives that were taken away.
I know very well that, at 28 years old, many of my most defining moments are probably still ahead of me. I won’t pretend to tell you that I have it all figured out. But the journey that brought me here has been life-changing. I’ve witnessed the marriage of beauty and pain and I’m stronger because of it. And I’m ready to look forward.
Kristin
http://crownjewells.blogspot.com
2009 was the worst year of my life.
After months of excruciating fighting, I moved out of my house with my husband and back in with my parents. It was embarrassing to say the least, but it was the only way I could afford to give myself a break and try to determine my next step.
About six weeks into living with my parents, we got a phone call in the middle of the night. My 39-year-old brother had had an aneurysm. We quickly made arrangements to hop on a plane and fly to New York City.
Over the next few months, I balanced my worries about Doug’s recovery with my own heartache. I wasn’t performing well at work. I started gaining weight. I secluded myself. I completely lost interest in saving my marriage. It was all too much. I finally decided it was over the same weekend that Doug got a clean bill of health. Sixty days later, I was divorced.
Instead of celebrating and feeling better, more free, my depression only deepened. Eventually, I realized that I had been measuring all my happiness by my surroundings. When things weren’t going well with my husband, I ran away. When I was worried about my brother, I locked myself in my room and cried.
Then it hit me: This hard stuff? It was going to make me stronger. It was necessary to build my character, to make me more independent, to give me deeper compassion. A friend introduced me to Enjoying the Small Things just after Nella’s birth because I work for Special Olympics and she knew I needed to start seeing beauty in the world again. I took on a new mantra: Love everyone and be joyful. When I began focusing on the good, the good found me.
http://www.mandipendence.blogspot.com
My story is a little different than most. I didn’t have a rough pregnancy or a child with special needs. My story is about what happened to me after my daughter was born.
When my daughter was around 7 months old, I started using hormonal birth control for the first time ever in my life. A few weeks later, I noticed my milk supply tanking and I wasn’t feeling like my usual self. Simple household tasks took away all my energy and I just wanted to sleep.
A few days later, I woke up with heaviness in my chest. I could barely catch my breath. I spent the day in tears trying to take care of my baby. That afternoon I began coughing up blood. My husband (Active Duty Air Force) came home from work and took me to the ER.
After an X-ray, CT scan, and multiple blood tests, I was shocked to learn that my lungs were full of blood clots. The NuvaRing had caused me to have several pulmonary embolisms. The Doctors in the ER that night were amazed I was still alive because of how blocked my lungs were. They told me if I had waited a few more hours, I might have not made it to the hospital. I had the worst case of pulmonary embolisms that the hospital had seen in 15 years.
At 22 years old, I was hospitalized for 6 days and put on blood thinner injections and blood thinner pills. I was advised to not have more children due to the severity of my case.
After a year’s worth of blood tests, Doctor visits, weekly finger pricks, and being on blood thinners, I am proud to say that my lungs are clear and I have a new lease on life.
Thank you for letting me share my story.
I had my daughter on what was to be the night of my senior prom. As my friends flocked up to see me in their prom dresses, I was left with a man I knew would never love me, a baby in NICU with liver complications, no education, and a job paying minimum wage. I was terrified. Although I ended my relationship early in my daughter’s life, I spent the whole of my early 20’s wondering how badly I messed her up. There are statistics galore on teenage pregnancy, but little on how to make sure your child grows up normally, unaffected by parent’s mistakes, and happy. I began junior college in 2005, surprized the world when I actually graduated in 2009, and continued on to a University. I would cry sometimes and pray every night to give Jayce what she needed to thrive. That I would simply be enough. And you know what? I am. I met an amazing man that loves Jayce enough to ask her if he could marry me, who ( and I have photographic evidence) ran directly to him and didn’t let go after “I now pronounce you man and wife.”, and who gave me my second biggest gift in life, my son. I am now proud to have a degree in special education, to help children be “enough”. And have found that I am enough. More than enough. To be a mother, a wife, a teacher. And to suck the marrow, baby. Thank you Kelle. For daily inspiration.
At 16 years old I was diagnosed with cystic fibrosis. A disease with a life expectancy of 35. I went from dreaming about prom, and college, and first dates, to wondering how long I’d have to live. Would I get married? Become a mom? Fulfill my dream of being published?
Eleven years later, at the age of 27, life looks a lot different than it did then. In five months I’ll marry my best friend. We’re in the process of buying a house. And I have a job I love. (I’ve even gotten a few articles published!)
Those questions still loom. Especially when it comes to my future. And getting married has brought all of those fears to the forefront. The one question many people that are engaged or newly wed get? “When are you going to have kids?”
If I didn’t have CF that question would be a lot easier to answer. But with the complications this disease brings, I’m not sure raising a family of little ones is in the cards for us.
Just writing that sentence gets me choked up. Not because I think my life will be empty without kids, but because I’m angry that CF has made that decision – and so many others – such a difficult one.
But even though I may feel like CF has “stolen” things from me, it’s also given me more than I could ever have imagined.
I was recently hospitalized due to a drop in lung function, something I’d been dreading for a while. But the love people showed overwhelmed me. People I haven’t talked to in years sent me words of encouragement, let me know they were thinking of me, and offered their support. Without CF, I might never have experienced that depth of love.
The biggest lesson I take from having CF is appreciation. Of life. Of love. Of people. But mostly, of every day. Because that’s all we’re promised. Right now. And I don’t want to take it for granted.
http://www.fromatopink.wordpress.com
Ever watch a dramatic movie and love it even though it made you cry big, ugly tears? After watching Titanic, almost every woman in the restroom at the theater was bawling her eyes out while talking about what a GOOD movie it was. The sadness wasn’t good. We liked it because of the DEPTH of emotion it made us feel. Over the past six years, I have learned the beauty of wrapping myself up in emotion and embracing it, good or bad. I have learned that life is fuller, richer, deeper, better, when we feel with all we’ve got.
I remember the pain of not getting pregnant. Before my feet would hit the floor, my heart would sink, and I’d think, “I’m never going to be a mother.” Those three years of hurt were the longest, loneliest years of my life. I thought I was strong enough to deal with a lot of things, but I never, ever thought I wouldn’t be a mother.
I strangely found out that I was pregnant at a fertility doctor’s appointment, shortly after having my uterus scraped to check progesterone levels. The fact that I was still pregnant was a miracle in itself, so when I found out that I had placenta previa, and the egg implanted in an unusual spot, I knew that egg went right were it was supposed to and that everything would be fine. Those thoughts got me through a very difficult pregnancy that required (among other things) 2 months of bed rest and a month early C-section. Amazingly, I was blessed with a 7 lb. 12oz. perfectly healthy baby boy.
After an easy, uneventful second pregnancy, I was surprised to give birth to a child with Down syndrome.
My life is full and rich and deep, and I wouldn’t trade my experiences for anything.
http://secondtimearound-vernyvern.blogspot.com/
Life has definitely thrown my family some curve balls. First, my then 4 year old was diagnosed with celiac disease. Okay, no big deal we said. We can do this as a family. All we had to do was eliminate gluten and we did…problem solved. Then after multiple tests to figure out why our two year old was having seizure like episodes, we discovered he has glycogen storage disease. He has to take 3 “milkshakes” a day with cornstarch and protein powder and sugar is not allowed…ever. So we followed instructions and elimintaed sugar. Problem solved for now. All of this while I fight the disease ulceritive colitis which has landed me on a different diet. Then came the miscarriage. It’s been a bumpy year and rather than scream and cry..we are embracing it. Im learning to cook, our boys are healthy right now and we are fighting these diseases and circumstances as a family unit. Getting stronger in every area… even cooking! Never thought things like this would happen to our family, but it did and we are going to be okay.
PS…You my dear are an inspiration!
Our son, Kemper, was born April 2009. The next day, he failed his newborn hearing screen at the hospital. They told us not to worry, “ He probably just has fluid in his ears”, but our hearts told us something different. After many tests, he was diagnosed with profound hearing loss. He was deaf.
The news left us heartbroken. All I could think was WHY? WHY? WHY?!! We were struggling trying to understand the situation.. The hurt took over and we felt like we were in a fog watching the world continue as we stood still. We mourned for him, and for this new silent world he was now forced to embark upon. We did not know what the future would hold for him, but we took him home and loved him just the same.
Kemper was fitted with hearing aids at three months old. Unfortunately, he did not receive any benefit from them. During this time, we began searching for other options, and came upon Cochlear Implants. If we ever wanted our son to hear, we decided that this was the only way.
Kemper received Cochlear Implants at nine months old. Three weeks later, he heard his first sounds. After only ten days of hearing, he began responding to his name being called by turning his head in the direction of our voices. Three months later, he spoke his first word…Mama.
Kemper is still deaf and will always be deaf. Without his sound processors on he cannot hear. He will still have challenges in life with his hearing and being “different”, but hopefully we can help give him the tools and support to thrive and be happy.
In the beginning we felt defeated. We were new parents, just raising a child was scary for us and now we had one with special needs. This is not what we expected but these were the cards we were dealt. We had to find our new normal.
Thank you for sharing your story.
Helen
http://WWW.lonestarcouple.blogspot.com
http://www.youtube.com/watch?v=2owGqb6po0E&feature=youtu.be
After coming into the world nine weeks too soon, our (first and only) child spent five weeks in the NICU. During that time, I kept hearing “we’re so sorry” and “it must be so hard.” To be honest, from his first day of life, I was thankful Gavin was in the NICU.
– I was able to heal from my emergent c-section, sleep through the night and generally take care of myself during the first month of motherhood.
– Our son had a team of nurses and doctors who cared for him 24/7, giving him much more specialized care than we could ever give him at home.
– I spent my days with him in the NICU (my husband joined me after work) and could ask the nurses just about anything I wasn’t sure of.
– Our son got on a fantastic sleeping and eating schedule.
– He learned how to self soothe when the nurses weren’t immediately able to respond to him crying.
– Our son learned how to sleep with lights on and commotion around him.
– He learned to be ok with people, other than his parents, holding and caring for him.
– We learned to be OK leaving our newborn in other people’s care.
– Everyday, I walked into that NICU, looked at all the really sick babies and was so incredibly thankful that our son was just small and needed to grow.
To this day, despite my unexpected pre-term labor, I am still incredibly thankful for our experiences in the NICU. Not only did we have extra support during a time when most new parents stumble their way through the days, but we realized that babies are resilient, offering us new perspectives on what it’s like to be a parent.
Nilsa @ SoMi Speaks (http://somispeaks.com)
Within 3 years I lost 3 of the most important people in my life.
My sister was killed in a car accident, leaving 4 little ones behind boys aged 8 and 5 and twin girls only 6 months old. I’ve learned it only takes a moment to change a life….my roller coaster carriage had commenced its uphill climb…..
During that year, my adored mum was diagnosed with ovarian cancer.
While coming to terms with mums fate, and caring for my sister’s children, we were hit with the ultimate tragedy. Our beautiful 2 year old girl Savannah was diagnosed with the terminal illness Metachromatic Leukodystrophy, which is similar to Lou Gherig’s disease. Over the course of the next year Savannah lost the ability to walk, to talk, to eat and became a tiny rag doll in a bed that could only move her enormous blue eyes.
I don’t have the words to describe the pain……
Amongst all the chaos and grief I gave birth to our second child Dempsey who is thankfully happy and healthy and doesn’t have the genetic fingerprint her sister had. My sunshine in a blue cup!
I nursed my mother that year until she passed away. Savannah and Mum being in sync with their dying.
Savannah died at the age of four and a half. There’s not a day that goes by that I don’t miss those eyes or who she’d be now….
Throughout my journey I’ve discovered the gift of grief, the awareness it brings and a gratitude for life.
Challenges create growth and strength and are fuel for the soul….the human spirit can survive anything…..
Today, I’m grateful for my memories that are trapped like the snow in a snow globe…sometimes shaken up, sometimes bittersweet, however there to remind me to never to take a day we are gifted with for granted………
love Diana x http://sunshineinabluecup.blogspot.com/
I thought I knew my purpose, but little did I know that I would enter a journey of faith this year, all because my little tough guy rolled into my world with unexpected plans.
My life was so great. I had a beautiful son, an amazing husband, and I was enjoying being a working from home with my small tutoring business and being mommy, but I knew someone was missing. I had this strong urge that another child wanted to be part of our family, so when we got pregnant after the first try I knew this child was meant to be.
Everything changed when I heard the words at our ultrasound at 24 weeks, “we have to talk about some things.” My heart sank…. Words of Spina Bifida, Omphalocele, club feet, amniocentesis, incompatible with life, multiple anomolies and genetic counseling filled the room. What? Everything was going so well. He had such a strong heart beat from the beginning? I took folic acid! How did this happen? I am 29 and healthy! After a grueling 10 weeks of research, soul searching, hope, prayer, and rivers of tears, my son arrived 6 weeks premature with a very rare condition called OEIS. OEIS affects one in 250,000 births and is a defect of the abdomen and spine. My son has had two major surgeries in his short little life and will endure many more. He has a colostomy bag, his bladder is outside his body and he has no movement or sensation from his waist down. Some may say he is paralyzed. He just recently got his first wheelchair at 10 months old.
It has taken me almost a year to accept that Isaac’s condition. If I could heal Isaac, I would in an instant, but I realize, I would not be whole without him arriving into my world exactly the way he did. I would not truly look at people for their spirit and understand that their energy is what makes them beautiful. My little Isaac has blessed our lives tenfold. His smile is contagious and everyone that meets him is in awe of his spirit and strength.
Now I know the purpose that we all have… It’s simple. Just love. Thank you Isaac for taking away my “paralyzed” vision of beauty and helping me love more purely.
~Jill
http://www.isaacsinspiration.blogspot.com
I just changed my blog title to ‘Dancing Backwards in High Heels.’ That’s as far as I’ve gotten – name change but no post in 18 months. I hope to pick writing up again very soon, but meanwhile…I’m a proud mother of two beautiful babies, a 3 ½ year old and 2 year old, they are simply the best thing I’ve done with myself. There was no chance in hell I was going to work until my kiddos were at least five. Well – life happened, and I work, as many mothers do, as the VP of Client Services for a company in Austin. My day is as crazy as all of yours, and yes, there might be screams into a pillow when I’m fighting with my adorably independent daughter about what she’ll wear as I glance at the clock and realize how quickly it ticks towards my 9:00 a.m. meeting. And yes, there might be lines to girlfriends – “I know its Monday but if I could drink as much wine as we consumed Friday night I would, but I can’t.” And yep – you guessed it – my heart rips into pieces when I realize I’m missing community sing along at school (I’m THAT> mom) because I have a client trip, or that the Barnes & Noble storyteller knows my son Ty because he goes there every Wednesday with our nanny. “THAT SHOULD BE ME!,” I scream silently as I introduce myself as his mommy while in my mind I feel I should say to her, “I promise I’m a good mama!.” I didn’t expect this constant weight I carry but I know I’m carving a way for my littles to conquer the world. I read your book on a work trip and was reminded to press on, make moments last, and embrace what life has offered. Thank you for that. The beauty in all of this is we bloom in so many seasons, wilt, bloom again, need water, need love, and manage to dance on.
I do realize that the above DOES NOT compare to the many stories shared here, all demonstrations of finding beauty in the unexpected, showing so much perseverance and grace through tremendous heartache. I admire all of you.
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This comment has been removed by the author.
They day after I was married in 2003, we started trying for a baby. It took almost exactly 3 years for that dream to come true. When my son was 10 months old, we decided to try again, and the first go around, we got twin boys. We added a little girl to our family when they twins were 2 1/2. I thought my dreams had come true, but so had some of my worst fears. My oldest son was diagnosed with Aspergers, a seizure disorder, anxiety disorder and a developmental delay in 2011. Then, my “little” twin was diagnosed with PDD, pediatric bipolar disorder and an anxiety disorder in 2012. The bigger twin now is being evaluated for neurobehavioral issues as well, so I am bracing myself for what is to come. This is not the life that I had planned for myself. Some days I am still going through the grieving process and other days, I am okay. The bad days outweigh the good days right now though.
I’m not quite certain how you could possibly choose just four out of all the wonderful I have seen. :~)Also, I guess I am “out” b/c I couldn’t condense to under 300…haha.
On January 19, 2010, just a few short days before your world was forever changed by the birth of your sweet Nella, ours was changed by the discovery of our first pregnancy. We felt the things most new parents feel after seeing the double pink lines, happy, excited, anxious, terrified, nervous about the changes a new little person would bring, but mostly just blissful. The first couple of months were “easy-peasy-lemon-squeezy”. I continued working out, going on walks, teaching, and hanging out with friends all while keeping our “big secret” from everyone. We waited the customary 12 weeks before sending flowers to the would be grandparents announcing our little surprise, but just 2 days later things changed. I ended up in the emergency room with pain I thought might be my appendix, resulting in an emergency ultrasound. I will always remember the disgruntled night-shift US tech’s words, “Ha….well…do you want the bad news now or later?”. I remember thinking it couldn’t be all bad because of the “ha”. I mean, who would laugh at a scared mama laying there on the US table? She proceeded to turn the monitor to show me our TWO babies bopping around oblivious to the GIANT hemorrhage hanging out right next to them. (hopefully this doesn’t count against my 300 words, but I think this may be the same kind of thing you had with Nella, you didn’t give it a “name”, but the description sounds spot on, mine just hadn’t bled….yet) From that moment on, I was “high risk” and pregnancy was no longer fun. I allowed myself to sink into darkness, I lost who I was and wasn’t sure I could get out from under the fear of losing my boys. The boys were born by emergency c-section at just 30 weeks and 4 days, exactly 6 months after your girl. They spent a relatively short time in the NICU and are now happy, healthy and totally and completely ornery. Crap, now I have gone way over the limit! Anyway, the part of all of this that really connects with the book is the fact that BECAUSE of all that has happened, I have met a wonderful group of women through an online “support group” who have been through just as much if not more than we have. I love these women. I love their children. I love that the dark little seed, originally sowed in fear, has BLOOMED into something fantastic.
Heather Sebel
My second thought when I read Kelle’s call for Bloom stories was: “Don’t get your hopes up – yours will never get picked anyway.” And my first thought, by the way, was: “Hey, that sounds really fun.”
I do this all the time. I am a thriving, successful, healthy 31-year-old woman – and I am afraid all the time. Feeling happy is a reason for me to start worrying about what could be lurking around the corner. I agonize about the possibility of sickness, of accidents, of losing my job, of being naïve and not seeing “it” – with all its “what-ifs” – coming.
We’re told “don’t get your hopes up” and “brace yourself for disappointment.” It’s supposed to protect us from heartache. But trying to protect myself constantly is poisoning life’s beauty for me. And it’s causing me to consider the possibility that the one thing I have to fear most is a wild and precious life wasted worrying, bracing, and “not being naive”.
“Enjoying the Small Things” bear-hugs happy moments such that no one can never take them away. Ever. No matter what happens – all that good stuff is there, well, for good. The pictures are proof, the captions concrete evidence. So a while ago I decided to try looking at the world through the eyes of a blogger. It helps me forget about the scarey unknown and focus on the savory what-I-know-right-now. And it turns out blogging, too, is a way of blooming. So while Kelle’s bloom book symbolizes “finding beauty in the unexpected,” my bloom story is about learning to embrace – and wholeheartedly believe in – “unexpected beauty.”
your dad’s comment blessed me to my toes. wish i could meet that nella girl. i say holy cow all the time. we would bond;)
loved reading through all these amazing amazing journeys. what a beautiful thing to do kelle…open this up to your sweet readers. i’m not sure my story qualifies. it’s not dramatic. it’s just life stuff. moving, struggling a bit with depression, a fall out with a friend…learning forgiveness, starting over again.
your book blessed me on so many levels. i have a letter to write you. it’s simmering in my heart.
It’s quite a long story, but I am thankful for having gone through it. It brought me to having faith, perspective, and true joy in life! I saw our friends hold our family up. They even took care of all of our children at times when Matt needed to be with me in the hospital, Oliver being weeks old and very recently home from the hospital himself.
I had a c section with Sophia, then a VBAC with Miles, both preterm, S more so. We elected to have a cerclage (suture to tie cervix closed until term) placed at 16 weeks with Oliver’s pregnancy. I’ve had a few miscarriages, and we believed my cervix to be to blame for all issues.
It worked great, but at 33 weeks my water broke, so I was admitted to the hospital for steroids (for fetal lung maturity) and monitoring. The goal was 34 weeks then induction of labor. (planning another VBAC of course)
Labor went perfectly I was coping well, and seemed to be transitioning (close to the end) when the pain changed. I remembered a patient who’s uterus ruptured during her VbAC while she had an epidural so it wasnt noticed, she almost died, lost her uterus and her baby died! I ignored about 4 contractions then thought of her and told my nurse/friend about the pain changing. I was in surgery and Oliver was born in, I kid you not, 2-3 minutes! My uterus was rupturing on the right side.
So fast forward a few days I have a lot of pain on the right, no one can understand why. Next day I start with fevers, still can’t figure things out. They guessed it was an infection in my wound so opened my incision to leave open and allow to heal from the inside out. I went home after a few days on a very high dose, high potency, long course of antibiotics and Matt learned to pack the huge hole in my abdomen.
Oliver came home after about 10 days, I was having increasing pain, but learning to accept it. I was so depressed hardly felt like he was mine! Thank God for our friends, community and family!!
I finished antibiotics and two days later fever came back! I went to the hospital and in to surgery again. My appendix had been ruptured for days. 3 hours later I was readmitted with peritonitis and two open wounds, two drains, and a very worried husband. I stayed another 10 days! I had 2 units of blood, my milk dried up and I never felt such depression. Totally depleted!
I have since gotten my milk supply back, and seen God work his many miracles in my life. We have built a number of growing and meaningful friendships. I have fallen in love with all our children and Matthew again. I am still learning to accept that I can’t have anymore children. But it gets easier!
I truly believe Gods plan is great, and it all fits together. The bigger the trial the bigger the joy after. Simply living and loving life now, and how sweet it is!
My story plays out a little like yours. First born, at 20 yrs, NOTHING showing up as “wrong” in the Ultrasounds, exams, tests, etc… Born at 37 weeks after 9 hrs of labor, literally 5 minutes after she was born, before I’d even SEEN her, the midwife is telling me that she has down syndrome and needed to go to the nursery for observation. I have ONE picture of me holding her before she was 2.5 weeks old. She came home at 3 MONTHS old, went back at 4 months for a cold, and again at 6 months for Open Heart Surgery. I was, at that time, just about 3 months pregnant with her “typical” little sister. Brooke and her situation taught us the patience we would need, and the fact that we have the capability of a lot more than we thought. She’s fed from a g-tube, but she has the biggest, silliest personality. (P.S I would LOVE a Bloom book, being a mom of two, and the only one working, it’s hard to afford the luxuries ;p). You’re the one who helped me through the first few months, watching Nella grow convinced me that my daughter wouldn’t be some “Freak” and that she wasn’t “damaged” in some way.
I wrote this on 3-21 this year….I was thinking about all the gifts that lie in struggle, in hardship, in growing. It’s hard to navigate them sometimes, you look away, live in denial, continue to make the same mistakes because really it’s hard to see truth and not so pretty sometimes. But, our children they are teachers, they are students, and in the end we have so much to be gained by them. And I feel like Nolan, my boy with an extra 21st chromosome, is my guru. My ultimate teacher of all things beautiful. There are things that may look difficult and truly are about having a child with special needs, a challenge I didn’t voluntarily raise my hand to participate in, a journey I didn’t want my life to go down. But, that’s the thing about a guru, you don’t know, what you don’t know. I have written numerous times about the influence that Nolan has had on our growth as a family and personally. The little things he teaches me almost daily. But, something I haven’t written about is what a true miracle he is. The odds I had at 33 of conceiving a child with down syndrome was .0025, according to our geneticist. I remember in our first few months, we kept saying that, over and over, we were obsessed with how this happened at all to us, why us? We couldn’t seem to get past it’s negative connotation, so focused on the heartache. But, perspective is a beautiful thing. When you really break down the odds of his survival, he is more amazing then most births. Now we see him as a hero of sorts, I mean, first of all something like 85% of all genetic problems result in a miscarriage before 12 weeks, then with early testing about 90% of those that survive are aborted, still another 50% have major health complications upon birth and require major surgery. That’s all from a measly .0025% chance, so my Nolan, he is beating the odds every day. Kicking and currently screaming :0 his way to survival. You see, he knows more than me, than you, than most of us. He is a true teacher. His lesson plans are deep and subtle. He squeezes your heart and won’t let go. The moment you stop and think that you can’t go on, he pulls you back in and says you can. And you do. I only hope that I can give to him a little return on the love he has given to all of us, to make him proud as his mama. It’s the least I can do for my guru.
From the day I married my husband I had a clear, High Definition vision of our future. I pictured everything from our marriage to our kids to our family trips, to college for our children, to their weddings, to grandchildren, and beyond. Yet, on 1/3/12 my HD vision turned to blurry, snowy, antenna grey and I no longer could see anything. On 1/3/12, while I was 22 weeks pregnant, we received the news our 2nd child would be born with Wolf-Hirschhorn Syndrome (a very rare diagnosis caused by a deletion on the 4th chromosome).
At that moment, I did not know what would happen to our family. Would we ever go on family trips, would our kids be close siblings, would our friends/family pull away from us leaving us alone, would this child even survive? Every ounce of my body hurt with the loss of our future.
Then on 4/2/12 when our little man (JD) was born I started to get a clearer picture. It is more 1970s Technicolor than HD at that point but I finally got an idea of our new future. I see my oldest son as the big brother who wants nothing more than to make his little brother smile, I see them in the back yard playing football and baseball together, I see our older son at college calling his little brother every week just to talk. I also see JD winning his first medal at the Special Olympics with his more fans than anyone cheering him on in the stands. I see more family trips than I ever imagined watching the kids swim in the ocean or meet Mickey or horseback ride on a Dude Ranch.
I can now see the exact same happy family as I did in my previous future with a few new and improved tweaks.
Cheers,
Jenn
http://growingupgawel.blogspot.com/
I had a nervous breakdown when I was 23 and in grad school for my Masters. I wasn’t even sure what it was until a therapist diagnosed it almost six years later. It took me that long to tell someone besides my husband the whole truth about the fear that finally took me down after years of anxiety and stress.
At the time that it happened, I thought my life was over. It was the worst thing that ever happened to me. The pain was unbelievable. It broke my heart. It derailed my career. But it ended up being necessary to my growth. I had been stubbornly clinging to a path in life that wasn’t right for me. Now, almost a decade later, I am starting to love myself. If I hadn’t had that breakdown, I wouldn’t have left grad school and mover to Austin. I wouldn’t have adopted my first pet. I wouldn’t have met my husband or given birth to my beautiful son and daughter. Through the pain and loss of what I thought was my dream, I found my way to what I really wanted to be – a cat-lover and stay-at-home mom who writes what she wants for her own pleasure.
(ugh, sorry for the deleted posts, trying to post from work and computer’s acting up)
After 3 months of trying to conceive and 40 weeks 6 days of pregnancy I welcomed my first born, a daughter named Aurora, into the world. A joyous occasion right? That’s what everyone tells you and I had witnessed firsthand the joy a first baby brought to my sister and my close friend. I was anxiously anticipating that experience for myself. I had long day dreamed of becoming a mommy, of crying as she was handed to me seconds after her birth, of smiling and kissing her and whispering “i love you baby girl”. However, my experience was not joyful, I was not flooded with emotion and love, and I did not cry tears of happiness. I instead sat in shock, unable to muster the physical and emotional strength to even hold my first born child for the first hour after her birth. There was nothing wrong with her, she was healthy and beautiful. I simply was not connecting to the fact that I had just had a child, MY child; I was not bonding with her.
I obviously did not realize this at first. I had a forceps delivery and so I attributed my state of being to the trauma of a difficult delivery. But weeks and months passed and things did not get better. I was irritable, I cried often, I felt annoyed at my new obligation (my child) and felt easily overwhelmed at even the most basic of tasks related to daily life. I was not enjoying being a mother and time was slipping by so fast. I often thought “what is wrong with me” and was angry as I watched friends and family members as they adored and relished in their children. It wasn’t until 6 months after her birth that I finally sought out support. Through 6 months of therapy I came to understand Post Partum Depression. I began the process of forgiving myself and grieving the loss of what I had envisioned my life to be like as I welcomed our first child. I most certainly had not envisioned this. I grieved over the 12 months I had lost with my daughter. The first year of a child’s life is so full of change and I had missed so much.
Shortly after my daughter’s first birthday the prominence of the post partum depression had passed and my bond with my daughter was growing, but there was still something missing. Starting our family definitely was not as I had envisioned, it was hard, it was sad, and I could wallow in what I had missed out on, or I could take life by the proverbial horns and take control of my happiness, our bond, and all the memories that would go along with it.
I truly believe that the struggles I endured that first year were a blessing, they made me more aware of how good a mommy I want to be. They forced me to be more aware of my relationship with my daughters and to cherish all our moments together. If it weren’t for my post partum depression I would never have dedictated myself to birthing my next child all naturally, no medications, no epidural (I blamed the epidural for my lack of progress during labor and the resulting forceps delivery and I associated the forceps delivery to trauma and affecting my bonding experience). And in the end the natural birth of my daughter in April 2011 (on my 30th birthday) was the most profound experience of my life.
~Amy
I forgot my blog URL: http://www.kittymomma.com.
I grew up under some tough circumstances. My mom was married to an alcoholic so she had a hard time supporting me and my brother. We were both sent to live with different family members at young ages. I lived with her brother and his wife for many years. I was picked on by her 2 sons and mistreated by my aunt. After several years, I went back to live with my mom. I harbored a LOT of resentment towards her for not being there for me. Then, after giving birth to my son at the ripe old age of 19, my mom suddenly became my best friend. She taught me how to take care of him and be a mom. Then, I went wild and got involved with the wrong crowd and history repeated itself. My son was left to be raised by my mom. I finally got my act back together and got him back with me though. 2 years ago, my mom was diagnosed with terminal cancer, Squamous Cell Carcinoma of unknown primary. She went through chemo and did fantastic for a while. Then it wasn’t working anymore and there was nothing more the doctors could do for her. So she came home on Hospice so she could die in peace, at home. It was my honor and privilege to care for her when she could no longer care for herself. She taught me so much during her tribulation. She kept constant in her faith and always found the beauty in things. She knew that God was allowing her to go through this because He knew she was strong enough to handle it. I am still trying to find the beauty in her loss, and I will. But the beauty from my childhood is that I now have such a close connection with that part of my family. I praise God daily that those relationships were restored because I could not have gotten through her death without them.
That Monday was pretty typical: drop Gracie at daycare, off to work and to my OB appointment. I was 26 weeks along so this stuff was second nature to me now. When the Doppler moved frantically, I knew something was wrong. “When’s the last time the baby moved?” And just like that, a typical day turned into one that I will remember forever. Our son was born a few days later. We were asked, “burial or cremation?” We wept, we held each other, we did our best to move on. Being a “God-spinner”, I knew it was for the best. Something was wrong and he was spared a difficult life. I marked the calendar days off… 10, 9, 8 – “honey, we can try again!” Try we did and just like that, another little heartbeat grew stronger every day. No need for testing: what are the chances something can go wrong twice? I’m only 28!
When the Ultrasound Tech said the Dr needed to talk to me, I knew. When the Dr asked my age, I knew. My baby had something called Duodenal Atresia as well as a 60% chance of being born with Down Syndrome. I called my mom: Are you sitting down? When Aidan was born, I saw his eyes and I knew. The Dr said, we have to test before we know for sure, but I already knew. My husband was elated: a boy! He brought a football and made hut, hut hike! noises as the incubator disappeared into the OR. He said, don’t worry honey! It’s not for sure! But I knew what no one was confirming. A surgery, transfusion, g-tube and tracheotomy later, we took him home on Christmas Day, 2004. It’s true: God does everything for a reason: our world needed a bit more Love.
My story isn’t completely related to my son, but it comes full circle in a way. I’m 4 years younger than my brother, who was born mentally disabled. My parents, from a child’s perspective, handled it like rock stars – but I’ll never know what was happening in their hearts – only that they loved us unconditionally, as parents should. But me? I can admit now at 30 that I was a horrible little sister. I don’t remember ever making fun of my brother in public, but at home – that was another story. I remember always being frustrated that he wasn’t like everyone else’s big brother – I couldn’t come to him for advice, he didn’t protect and tease me like other big brothers. So, as horrible as it is to admit, I was mouthy, rude and belittling to him. I always knew it at the time, but the angry child and teenager in me couldn’t handle it. The older we got, the more guilty and horrible I started to feel. I remember so many sleepless nights in the last 10 years agonizing over how I treated him. Could he have been happier if I’d treated him better? Did I contribute to his frustrations with his limitations? These questions plague me. Fast forward to finding out I was pregnant with my first child. The anxiety overwhelmed me. Not necessarily that what my brother had was genetic – that my baby would be born disabled – but that if he was, I would treat my child the same way I treated my brother (Oh, here come the tears). I begged and pleaded with God for forgiveness and Grace. I mended my relationship with my brother and forgave myself (mostly). My baby was born without special needs, but I know special needs is in my future – I’ll be the one to take care of him when the time comes. And partly because of this and partly because your blog, I know that should I have another child born with something special, I know now that after the grief, I’ll be able to love him/her with a pure love. And I don’t agonize over the future with my brother any longer – I just pray he can feel loved his whole life, and I can make up for my misgivings as a child.
I grew up with a father who was excessively controlling and a mother who tried to show love but was restricted under her husband’s dictatorship. As a result, I spent most of my time out-of-doors, hiking in the woods or staring up at the stars or tending to my garden or hanging out with my goats. I found a peace there. I felt belonging there. Inside, I heard insults and threats. Inside, I was battered down. Outside, I heard the beautiful sounds of life. Outside, I felt held up by God’s hand.
My 30th birthday is approaching and with it, a joy in the lessons learned during this last decade of life. I’ve moved away from the destructive home life. I’ve become independent. I’ve embarked on my dreams of seeing the world, of making a difference. I’ve collected so many wonderful friends in the process and made so many wonderful memories. And although wounds take time to heal and the scars still show, I feel like I have finally bloomed into the person I was meant to be. I now have a proper view of myself. Of the world. Of finding the beauty and holding hard onto it. Always. And oh so tightly.
On this Mother’s Day, I’m celebrating the love my mom has for me, even if she has never really been able to show it, even if my dad prevents her from communicating with me anymore. I know deep down she loves me. And I love her, too. Deeply. I’m celebrating the ladies who have lifted me, listened to me, loved me, did life with me. I’m celebrating the dream I have that, one day, I will become a mother myself. How I yearn to love a little one, to nurture them, to explore their world alongside them, to teach them that, whatever may come, this life is beautiful. And, together, to look for that beauty every single day.
Dear Kelle,
Thank you so much for sharing your honest and beautiful story.
I am the proud mother of Maggie four and Joseph two. Joe was born on 3/18/10.
When we were in the hospital Joe failed his newborn hearing screening. I didn’t
really think anything of it. I remember thinking, “He will pass the next one.”
Well, four hearing tests later he still was not passing. This is when he was
sent for additional screening with an audiologist. I remember thinking of all
of these worse case scenarios in my mind. The one thought that kept creeping up
on me was that I would never be able to whisper, ” I love you” in his ear or
comfort him by the sound of my voice when he was hurting. It broke my heart.
He continued to be test and was fitted for hearing aids at three months. He is
now a rambunctious two year old with a passion for life. He is still tested on
a regular basis to see how well he is hearing. Until he gets older we won’t be
able to get a truly accurate reading. He works with a wonderful speech
therapist, and while he may not be speaking as other two year olds, he has come
so far. I continue to look to my friends, family, and my faith for support.
Thank you so much for letting me tell you about my wonderful son Joseph. God
bless you and your beautiful family!
Melissa Springer
Kansas City, Mo
Sent from my iPad
Nine months ago, my three year old son, Luca, was diagnosed with Autism. The first emotion I felt was fear. Then worry. And then an overwhelming sadness. I remember driving home from the doctor’s office with these emotions swirling around in my head, looking back at my sleeping Luca and crying. I cried for so many days that I lost count. Every single dream I had for my sweet boy and his future now felt light years away. I desperately longed for the days when I was pregnant with him; the days of footed pajamas and mommy & me yoga; the first year. I wanted so badly to go back to that time of innocence-that time of bright dreams and hope. That time when Autism was not a part of our lives. My sadness turned to anger and I began to hate Autism. I hated its existence. I hated the sound of it. I hated it because it chose my son. Those were the darkest days of my life. I longed to crawl out of the hole I had fallen into. So I started climbing, and day by day, I began to realize that Autistic or not, Luca was my son- my bright and beautiful boy who I had prayed for, and who was so graciously given to me by God. I was hand-picked to be his. From that realization on, I began to bloom. Luca began to bloom. Our family began to bloom. And my oh my, how beautiful we are today! Luca is so smart and loving. He talks. He sings. And he prays. I no longer hate Autism; I am thankful for what it has brought to my life. I’m thankful for the quirky characteristics it’s given my son. I’m thankful for the people I’ve met and the knowledge they’ve given me. Now, not only do I look forward to Luca’s future, but I am hopeful for it.
Allison Trowbridge | speak your truth quietly and clearly; | aatrowbridge.blogspot.com
If I ever feel the need to whine about one solitary thing in life, I’m coming back here. Just reading a fraction of these stories makes me realize how very little I have to complain about and how very much there is to celebrate in life.
It’s been said that your life can change in a day — good or bad. This statement couldn’t be more true than when applied to my life.
Almost 3 years ago, in the early weeks of September, I was grieving the loss of my father. He was 54 and died suddenly after having a massive heart attack in the middle of the night. In the arms of his wife and my mother, the woman he had spent 32 years of his life with, he slipped away and made his way to Heaven. No warning, no chance to say goodbye. In a flash, he was gone and on September 11th, a day so many others had already marked as a day of great loss and sadness, we laid my father to rest next his parents in upstate New York.
On the other side of the country, here in Southern California, were my 2 younger sisters and I — all in our mid to late twenties. We were awoken with the news that our father was no longer with us and we were left to pick up the broken pieces that remained of our mother. She made it clear, early on, that she didn’t want to exist on this earth without him. And who could blame her? I certainly couldn’t. Things were…messy and complicated. And they remained that way for a very long time.
At the time of my father’s passing, I was 28 years old and single. I had successfully earned myself 3 degrees, all within the field of education, and yet after graduating with my master’s degree — I couldn’t find a job that matched my experience. No teaching jobs open. No school counseling jobs available. And so I settled with a job as a teacher’s aide, something I had done long before my days of teaching or earning those degrees. I was bitter and frustrated but I carried on and accepted any job I could get, knowing it would be good experience no matter what, and worthy of putting on my resume. And I was working with kids, the thing I loved the very most.
Then came the day my life changed…again.
On December 17th, on what would have been my father’s 55th Birthday, I received an email from a single father named Stanton. He had seen an ad on a caregiver website with my information on it; an ad I had long forgotten about, as I had posted it over summer during my time off during summer break. He was looking for help. He had a little girl, Chloe — who was 5 years old and whom he was raising on his own; a little one who just so happened to have little almond shaped eyes and an extra little special something. I agreed to meet them and invited the distractions that I felt a second job would bring.
Little did I know, the two amazing and special souls I was about to meet would later become my family; that their house, clearly marked with the number 54 (Thanks for the shout out, Dad) — the same number I had seen repeatedly since the day my father passed — would later become the place I’d call home.
Last November, Stanton and I were married in a courthouse with Chloe by our side. And a month later, in December, 2 years almost to the day we met, we ran off to Maui (to “Get Maui’d” of course!) and celebrate the new life and love we had been blessed with. We eloped…a second time! And this month? This is the month I will legally adopt Chloe and according to the state of California, officially be her mother.
Our life is…all that is beautiful in the unexpected. And together — that’s what we embrace, every – single – day.
Katie Hartsfield {We Love Syrup}: http://www.welovesyrup.blogspot.com
I’ve been able to find beauty in the unexpected. Five years ago I was a newly widowed girl. I married Chad when I was 19 and less than a year and a half later, and nine days before my 21st birthday, he died. Sometimes life knocks the wind out of us. Looking back at what I endured and learned during my first marriage, I see only beauty, acceptance and gratitude for my experiences. His love changed me; the experiences of cancer, death, and recreating myself changed me and molded me into the woman I am today. We all have a story hidden beneath our faces. I’ve learned to be more compassionate because you never know what others are going through. When I went back to school I met Tyson who offered understanding, a listening ear, and an unmatched sense of humor. Three years after meeting, we were married. Monday marks our one year anniversary and I never thought after enduring what I had before, that I would ever experience such a deep happiness as I do today. Never do I take waking up to him, the smell of him, the sound of his laughter, or the way his arms feel when they’re around me for granted. Life is fragile and can end so suddenly and unexpectedly but, the beauty comes from the way it arms us with the fresh perspective that adversity offers. After having a miscarriage last year, we are now enjoying a ‘viable’ pregnancy and I cannot wait to see him as the father of my children. I get to be a mama and even though I know it will be hard, I know it will be all the more beautiful.
300 words or less!? I tried earlier. And then I was quickly warned that mine was over the limit. By a long shot. I knew I couldn’t do it. It’s hard to share a story in such few words. I have shared little tidbits of my story here and on Facebook and IG. Mine is a story that is very closely related to yours.
Mine is a story of a young mom finding out at 24 weeks pregnant that Down syndrome babies are not just born to women over 40. Instead, I learned that I’d won the lottery and would be joining a Down syndrome “family” that I love dearly and hold very close to my heart today. I’ve had the fortune of “meeting” and getting to know countless amazing families who I get to share our journey with. People that have ginormous hearts and are passionate about life. They are incredible and inspiring.
No we aren’t the picture perfect family~that once upon I time~I dreamed of having. You know the kind you see in Gap Catalogs or in frames at the store. Ten years later I could care less. I wouldn’t trade my family for anything in the world. Now I know, and take comfort in knowing that indeed we are a picture perfect family in our own little way. I love that we are unique. And I love that we are differently the same. We love life. We are enjoying and living it to the fullest. With the added blessing of having a member who teaches us to appreciate the smallest things. She helps us to see the big picture. I love her and thank my lucky stars she is a happy and healthy 10 year old little girl who has overcome so much!! Open heart surgery for one!
In a nutshell: Megan was born 10 years ago with Down syndrome. I was blessed to know ahead of time because I had an amnio. I’m thankful I knew. Initially, it was a shock and there was a period of grieving. It was a fearful time. One filled with the unknown. What would life hold for Megan? I was given choice to abort her…why? Because she was less than perfect? That’s not why I had the amnio. I had it so I could plan. Prepare. And so that on January 31st Megan could have the best birth day ever! And that she did with over 30 doctors and nurses in the room to welcome her safely into the world.
I love my girl. I love that she enriches our lives. And I love that she opened our eyes to the deeper meaning of life. The things that truly matter. We do a whole lot of cheering at our house. And it’s over the smallest things. It’s a cheerful upbeat place. And Megan is a BIG part of that. I’m thankful for her extra chromosome!
~Lisa
http://www.differentlythesame.net
Hi Kelle, I heard you in NPR. What a beutiful and inspiring story… Thank you!
My son Javie has Angelman Syndrome. He wasn’t diagnosed until age two. We had no way of knowing when he was born just how special our little boy was going to be. Pregnancy was great birth went smooth. He was 7lbs 6oz of pure heaven soft and round and pink. There were no early signs that my son was born with a missing piece of chromosome 15. He was a very happy healthy infant. He had some trouble nursing and that did break my heart but we moved forward while he thrived bottle-feeding. At 6 months he didn’t sit or babble at 9 he wasn’t crawling. After being evaluated we were told he was experiencing delays and that therapy should help. So I was led to believe he’d catch up to other kids developmentally. I was in denial. I mean I had the perfect baby. There couldn’t be anything seriously wrong with him. I didn’t really know until the morning I gave birth to my daughter Jane 14 months later. When I nursed her the first time it was bittersweet. I remember looking down at her and thinking oh my god this is so different this is how its supposed to feel. I sobbed and knew there was something different about my son. Fast forward. He is now almost 9 years old. He has been walking since age 6. His epilepsy is well controlled with meds. He doesn’t speak but has no trouble communicating with us. Janie loves her big brother immensely and she is his Lovie. Thanks Kelle for sharing your life and reminding me that being a Mama is what makes me real and that my life is so very wild and precious. I grew these wonderful unique little people it has been an honor watching them bloom.
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When I first picked up your book, I didn’t doubt I would carry something from it. Maybe your way with words would speak to the mommy in me, or your humor would have me in stitches…. Little did I know Kelle, that your memoir would speak AT me and my new reality…life as a single mom. Every chapter, every story, touched my heart so closely, I felt as though we were grieving together, just different experiences. Listening to the words of your sister in the hospital and her experience, changed my world. The reality is, life throws you curved balls, and how you handle it is up to you.
My story: From the outside I painted this picture as though I had a picture perfect family. The truth is, inside I was dying. I was miserably unhappy and searching everywhere but within for my happiness. My marriage began to crumble. I was thinking out of lust, and not able to fight my demons. I made some initially small, but very poor choices and this ended up costing me my marriage. At first I was certain that this is what I wanted, but looking back, I realized that I was unhappy with ME, not my husband. I completely lost myself and had no concern for my family.
Never before did I envision this path for my life. I came from a broken home and was determined to break the mold set before me. I went from 100% confident in my decision to leave, to not confident at all. What happened? The truth is, I am not sure. I feel like a rag doll being thrown in a million different directions. I am currently 3/4 of the way through my divorce proceedings, and have begun to seen transformation within myself that I would have never found otherwise. This time on my own, I have discovered my greatest passions and hearts desires. I am a firm believer that God throws ugly things our way, to show us a greater purpose. I have completely broken myself down, and am working on building myself back up the way I wish I had been all along. Maybe I will be called to be the voice of reason on the other side of things, to help someone in their struggle one day. For now I am continuing to humble myself and picking up the pieces for my baby girl. Perhaps I needed this experience to become a better momma. A better daughter. A better friend. It will all make sense soon enough.
Lindsay Lee
Leelala.net
Lindslee00@gmail.com
The twins were our first children and they were a huge surprise. We walked into my 20 week ultrasound, anxiously awaiting the news of “It’s a girl” or “It’s a boy”, only to be asked, “How do you feel about more than one baby?”
I wish I could say that I was immediately excited, but all I remember is being numb, then terrified, and then a feeling of overwhelming inadequacy that kept me awake many nights.
I was consumed with fear over all the complications that my now “high risk” pregnancy carried. I agonized over my ability as a new mother to care for two babies. But the strangest thing I went through was a sort of “mourning” period for what I would never have. We would never be the little family of three – new parents who spend every waking moment doting over their little one. I needed a caesarean section and I mourned the loss of a normal labor and delivery. In short, I was a wreck.
Then my beautiful boys were born perfectly healthy and all that worry melted away with the first kiss on their squishy pink cheeks. That whole first year is pretty much a blur. Countless sleepless nights. Trying and trying again until I had mastered tandem breastfeeding. Thousands upon thousands of diapers. Two babies crawling and walking in opposite directions; two babies sick with pneumonia; two babies teething; two babies demanding our attention every single moment.
But there were also amazing things that will forever stand out in my memory – two babies learning to smile and laugh; two babies asleep on my chest; two babies saying “Mama” for the first time. Every hand clapping, shouting for joy, grab the video camera new development – doubled.
Somehow, something so unexpected, has turned into something perfect.
Natalie
nkamahaku1@gmail.com
The hardest thing I have ever done — the very hardest thing, in a life of hard stops and painful lessons — was saying goodbye to my children as I was wheeled into surgery to remove a brain tumor.
I don’t tend to like the platitude, “God only gives us what we can carry,” as it doesn’t really square with my theology. I don’t think we’re necessarily fated to walk certain paths. Free will and circumstance and accidents and God’s mercy and grace, they all weave together and either we grow or we don’t. Some of us learn to carry what we are given with joyful hearts and open hands; it isn’t easy, and it isn’t a given. I am grateful for all that I have learned, for how much I have grown, in the twenty-two months since that surgery.
I am disabled now. We live in poverty. I cannot work, or run errands, or cook, or do household chores; I cannot drive a car, or take walks, or use a desktop or laptop computer; I cannot comfortably use the telephone, go to a movie theatre, or listen to music. The tumor was located in the cerebellum — the balance and muscle coordination center of the brain — and I am well-scrambled, now. I have chronic vertigo, unceasing skull pain, my altered balance affects every moment of every day; my brain is constantly struggling to properly sort sensory input.
So many cannots and not possibles. So much loss and adjustment and pain. And yet …
And yet … I can love my children. And nurture them, and laugh with them, and read to them, and listen to them, and guide them, and teach them Latin and Greek and Algebra. So what if the laundry rarely gets folded? We are so blessed. So blessed. Every single day is imbued with grace. I am a better mother now, my children are thriving, my faith has deepened. And it is enough. It is enough. Life is a glorious, gorgeous gift and I am nothing but grateful.
Ellie at Facing West
We really need only to open our eyes to see the beauty in the unexpected. I read your book in 1 day and shed tears as though I was there holding your hand.
11 years ago I found myself alone after my going through a divorce. My oldest son was already in college and my daughter was getting ready to graduate High school and spend a year in Germany.
One afternoon I was raped and beaten, devastated and alone. I was already facing Empty nest syndrome. I felt I needed something to do someone to care for so I became a licensed foster to adopt home. My first placement was a 5lb newborn African American baby boy who was born to a drg addicted mom. As soon as I set eyes on him I knew he would be mine forever. 10 years later he is the love of my life and has beautifully fit into our family. I am remarried and we are truly Blessed with finding love in the unexpected places and unconvetional ways.
I am 17 years old and I’m just over 4 feet 2 inches tall. I have achondroplasia, the most common form of dwarfism. I am the only one in my family with this genetic glitch, though I wouldn’t want it any other way. Dwarfism has been more of a blessing than a hindrance to me, although there have been days that rocked me to my core. The “you’re so tiny. And fat.” The “oh my God, look at her!” The staring that goes on for minutes. The not-so-sly picture taking. Pointing. Being doubted of my capabilities. Making Children’s Hospital my second home. Having more doctors than fingers. Again, there have been a surplusage of pros than cons to this genetic glitch that changed my life, and that’s what has given me the chance to bloom. The biggest pro? My support system. Those friends who tell me all the time that they naturally forget about our height difference. A family friend who doesn’t have kids of her own and who has become my true “second mom” who told me, “I want you to spread your wings and soar, but heaven help anyone who messes with you! I am your tiger mom. I love you as if you were mine.” And best of all, Little People of America, who I call my second family more than a “support group.” They have ignited my self-confidence, brightened my outlook on life, and made me beyond thankful for the physical capabilities that I do have. I truly believe that in order to conquer something difficult and to bloom from it, it is necessary to have human support. That friendship net just like you always talk about, to catch you when you fall and who never stops cheering you on. That’s what has made me bloom. — Ellie
We “bloom” to borrow your word the absolute minute we come to terms with and accept any kind of adversity or unexpected event or situation. It’s amazing to me how from the deepest root of hurt or loss or “this side of hell” type occurrence, it can then begin to “bloom” into hope and a newfound realization that from this hurt or difficult situation, a blessing has actually been found. Though my struggles may pale in comparison to what other mothers are experiencing, we all have hopes, dreams, and visions of how things are going to be with our children. When something happens to shatter these dreams, it is almost as if a knife is being driven into your heart. Let me explain, my oldest daughter has severe anxiety. When she was first diagnosed, our family was in such disarray that no hope could be found from any angle. Through therapy, medication and lots of work on her part and ours, she is now enjoying life. Before, she couldn’t do all the things that you dream about your little girl doing…sleeping over at a friend’s house, going to grandma’s…things that may seem little but were part of “my dream” for her. I’ve come to realize that I didn’t write her story or mine for that matter…her maker did. His plans, although filled with pain at times, are so much better than mine. Because what I see now, is that my daughter is blooming. And strangely enough, if we hadn’t gone through the hurt, I don’t know if the blooms that I see now would have been nearly as beautiful. Altogether different hurts have come for my youngest daughter, hurts that you never dream of happening…not to your child. Hurts that cause nightmares and irrational thoughts, fears of not being safe…but again through all of this trauma, we are now seeing her bloom. I am starting to wonder if this blooming effect can even occur if there is not an experience that causes one to be uncomfortable, to be taken out of their comfort zone. We all have this in common, we all have dreams and hopes for our children that are shattered by this world, but given time and a new perspective, they will bloom and their bloom will be all the more brilliant.
Cindy Smith – mother of SC & MC…blooming strong!
There are some people who come into your life and change it completely— this is exactly what happened when my daughter was born in 2009. I spent most of my life numbing any feelings and pretending that life was going just fine because of the molestation I had endured as a child. I had repressed all of the memories for 25 years until my little 8lb blessing came into my life (I wasn’t thinking she was a blessing at the time, but boy was I wrong). Little did I know that bringing my sweet girl into the world would cause a trigger of emotions and memories to flood my mind. I’ve spent the last year recovering from PTSD and I finally feel that I am ‘normal’ again. Of course I have days of sadness and brokenness, but through the eyes of my daughter I see so much hope to continue to struggle through the brokenness to show her that I will overcome this and be better because of it.
My story isn’t about finding beauty in the unexpected, but finding beauty in the expected in life! For the first time in my life I can truly say that I didn’t deserve it, that I am enough, it doesn’t have to define who I am, I can use my hurt and past to help others, I have found true love (in my daughter and amazing husband!) and am blooming!
-Cari
I got a mystery chronic disease when I was 13. For most people, your teen years are about breaking rules and making friends, and maybe doing some homework. For me, there weren’t any friends, I was home all day, alone and feeling sick. Yet I wouldn’t change a thing about it, because I wouldn’t be where I am now. 17, getting healthy, and looking forward to going off to college. My life now looks more like the “typical” teenager’s, but in many ways, I don’t feel typical. I’ve gone through something most people never will, but I learned a lot about myself, and learned that I can survive anything. ~Tela
When you think of a person with Down syndrome, the first thing most people think is probably, “Those are the ones with the funny eyes, which make them look all the same.” Yes, people with Down syndrome can have that common characteristic of the upward slant to the eyes, commonly called almond shaped eyes. Well, for me, the thing that makes my son “different” is my favorite thing about him. When Bryson was two months old, I was still riding that roller coaster of emotions! After an unexpected diagnosis of Down syndrome and having people say things like, “delayed, mental retardation, heart defect, different” etc. One could say that I was a tad bit stressed! The bible says that God will carry our burdens and ease our pain. One morning as I sat in our big, brown, leather, recliner, rocking and feeding my sweet new baby boy, that very thing happened to me! As I fed Bryson, he turned his sweet little face to look up at me with his “different” little eyes. It was as if Jesus himself was looking at me through those baby blue windows of heaven. A peace came over me and I just began to cry tears of joy, because I knew in that very moment, everything was going to be OK. Very often I catch myself staring at Bryson’s eyes. They are to me, a little piece of heaven here on earth. When I am having a bad day, I can look into my little windows to heaven and know that I’m not alone! Different” is not a bad thing, sometimes it is the best thing of all! Next time you see a person with Down syndrome, don’t avert your own eyes because of a difference. Embrace the moment; look at the beauty in those sweet almond shaped eyes. Take a moment to talk to them. Yes, they might be hard to understand, as you are to them, but they won’t let that stop them! Get close and snatch a little piece of heaven for yourself, if only for a moment. Lucky me, I get to snatch heaven up every day!
DeeDee-Bryson’s Mommy
As a young newly wed I had no idea what being married to the military meant. I was just marrying my childhood friend, not the military. Almost three years in I’m starting to get in the groove. We got home from our honeymoon and I got checked in (some crazy place where we sat and answered questions, ID, car decals, took a class) then he left. On a cross-country. For two weeks. I’m in a big city by myself thousands of miles from my family. I’m from a small town and hadn’t lived anywhere that had more than a Wal-Mart. Let’s just say San Diego is not small. He came home and left again for some other practice business. Four months in he began a new kind of practice for deployment that had him gone weeks at a time. Then the inevitable 7-month deployment. He left two months before our one-year anniversary. I buckled down and planted roots FAST. Volunteering, making friends, taking any and all work. I began to believe in myself and have the confidence that I could do things on my own. By taking the risks and putting myself in new situations I slowly stretched and grew. I didn’t know I had it in me. I had to learn to ask for help, make friends with strangers, and pay the bills. There was a learning curve. It was painful at times. Nights of crying, running to hide in the nearest bathroom to hide my breakdown, dragging my phone EVERYWHERE on the slight chance that he would call, and dreams of the time we would be together again. He is home and boy are we blooming. What a beautiful life we have in spite of and because of my husband’s service.
Kallie
http://www.kalliefrances.com
Finding beauty in the unexpected certainly sums up my sweet life with my three children. Seven years ago my sweet middle son, David was born with Down Syndrome. We named him David because we knew that he would have a Goliath in his life named Down Syndrome. Little did we know that Down Syndrome would not be the only Goliath that Daid had to overcome. Tis past November David was diagnosed with stage four cancer (Wilm’s) that we are currently fighting with heavy chemo and radiation. Despite the hardest six month ever we are finding beauty from the ashes of childhood cancer as we have learned as a family that faith, love and hope are all we need. You can read more at http://www.sweetlifewithboys.blogspot.com
Last summer, my husband graduated from an elite law school unemployed and we moved away from all of our friends with no job prospects. Our son was almost 2 and very difficult, and my husband was studying for the bar all summer so he could not help. Then, 2 weeks before the bar exam, we learned that we had a miscarriage. A week later, my husband learned that his parents were getting divorced after 26 years of marriage. However, come November, my husband is offered the job opportunity of a lifetime – something he never would have found had he accepted something less. Now, we are a much happier family and hoping to get pregnant again this summer.
I, like you, have spent my whole life dreaming of mommyhood. All the cute little faces surrounding me and my husband day in and day out. At a young age I faced unexplained fertility but was fortunate enough to get pregnant in our first round of IVF. Our son is our whole world and all I have ever wanted was to give him siblings to love and grow with. I have a brother, my husband has a brother and sister. We couldn’t imagine our lives without them. My brother and I were best friends growing up and remain extremely close to this day. When we were ready for another we returned to our doctor and were pregnant right away. At 12.5 weeks our world came crashing down as the OB couldn’t find the heartbeat (we had heard it at 7.5 weeks at our fertility clinic). An ultrasound confirmed, we had lost the baby. I spent the worst night of my life losing the baby in the ER waiting room. 3 failed treatments followed over the course of 2 years. Our 4th (and final) try just this past February was a very exciting success! Sadly an ultrasound at 6 weeks left us worried and one at 7 weeks confirmed what we already knew in our hearts, we had once again lost the baby. Our dream of siblings for our son has been crushed. He will never have all the things I wanted so badly for him. He will have something very different and I am learning (with help from your book!) that that is perfectly fine too.
The chance of conceiving twins naturally – 3%.
The chance of having a miscarriage after a heartbeat is confirmed – 3%.
The chance of having a baby with congenital renal dysplasia – less than 1%.
Surprisingly enough though, I’ve experienced all of these events over the past 20
months.
After Paul and I lost “the twins” in October 2010, all we wanted was a healthy, happy baby. On September 14, 2011, that dream was realized
when Harrison came into the world, loudly announcing his arrival. After a tumultuous 6 weeks that included almost no weight gain and
constant spitting up, Harry was diagnosed with congenital renal dysplasia. Translation – his kidneys are small and don’t quite work right. As a NICU nurse, I’ve stood witness as parents have been
given a far worse fate than this, however, I still had to jolt myself out of the haze of denial, accept reality and mourn the loss of normalcy and the picture-perfect future I envisioned for my son.
Our reality includes doing everything possible to prevent infection: counting every milliliter of milk that he eats, monitoring weekly labs, administering 6 daily medications and 1 weekly injection, and going through 3 surgeries, including a surgically placed gastrostomy tube (although he needs to eat
twice as much as other babies his age, he has almost no appetite). We are left wondering not if, but when he will need dialysis or a transplant.
Amazingly, despite all that he has been
through, Harrison is happy and resilient. The truth is no parent should have to do what we’re doing, but we’ll keep doing it because this is the hand we were dealt. If a sweet baby boy can be as strong and brave as he is, then we’ll take a lesson from him and be even stronger so that he is the one leaning on us and never the other way around.
In the end, given the choice, I’d definitely choose normal-sized kidneys, but since God didn’t ask, we’ll make kidney disease seem like the coolest thing since slap bracelets. Mostly, this journey has allowed me to realize just how much of a rock star I can and will be. Harry deserves no less. We’ll make stuffed animals with their own feeding tubes, help Harry learn how to give himself his own meds, never make him feel embarrassed that potty training will probably happen later than for most, and never ever make him feel different than others. We will embrace the ways in which he is like everyone else. We’ll love him until our hearts hurt, we’ll rock the crap out of this one crazy and amazing life we’ve been given, and we’ll bloom – Paul, Harrison, and I – together!!
http://www.paulandalissa.com
My son is a miracle in every sense of the word. He was born premature between 26-28 weeks gestation. His birth mother didn’t know she was pregnant. He weighed 1 pound 12 ounces and was 12 inches long. He spent 104 days in the NICU. We were in two different states. I had to rely on the medical staff to love my baby in person while I loved him from afar. Finally we were able to bring him home!
We were only home 5 days when he had an apnea episode. The Emergency Room here calls it an ALTE (apparent life threatening event). I call is scary as hell! I had to do mouth to mouth on my tiny 6 pound baby. There was no obvious explanation why this happened. They drew vial after vial of blood to find the issue.
Finally the lab results came back. Almost everything was normal. But a few numbers came back extremely off. They thought it was a bad test. So he had more labs drawn. Those came back high too. The week before Christmas I was told he needed to be admitted for diagnostic testing.
On January 5, 2011, he was diagnosed with Duchenne Muscular Dystrophy. At 8 months old he could hardly roll over, could not sit on his own, and could not pull himself up. We didn’t think he would ever sit up, let alone walk.
Marcus will be 2 on May 19th. He is vibrant, charming, and funny. He RUNS everywhere! He has caught up to his age on everything except speech, and we’re getting close on that one.
I have had to remind myself to be patient. He will get there in his own time. And when he finally does, it will be such a sweet victory!
Emily (temmiesworld.blogspot.com)
I used to describe my past as spring mud. The kind that could suck your sneaker from your foot. I thought I had to figure out a way to pull myself out of that mire and clean the mess it left from my heels. In reality, I had to find a way to dance in it the same way a child attacks a spring puddle-with exhilaration and joy.
After being depressed for most of a year, my brother called me up and told me he was addicted to heroin.
Two weeks later, he was dead- killed in a car accident at age twenty-five.
The night before his funeral I was inspired to write words to share.
These are some of those words:
We have a job, to honor Bryan. To battle our way to the surface and swim.
Do more in this life. Do better. Try harder. Love your family and friends. Celebrate life. Fight for joy. SWIM. Fight for joy.
And in those amazing moments, when you are so happy you could explode, think of Bryan. Let him
live on in your joy because sorrow is no way to love someone.
I move forward, always fighting the pulls of grief and anger and instead choosing to celebrate the numerous wonders I’ve been given. I see my brother and I in my son and daughter. I feel like we have all been given a second chance in them—to do better and let life carry us high if we choose to see it that way.
I choose.
If life is slop under my feet, I’m kicking off my shoes and dancing in it. I don’t care how messy it gets, how it stains my hem, I’m dancing. I’m shouting with joy. I’m singing, “Thank you. Thank you. Thank you.”
-Autumn Canter
http://www.autumncanter.com
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She wasn’t supposed to live.
My daughter wasn’t supposed to survive past 25 weeks gestation. They told us, over and over, that she had Trisomy 18, that it was deadly, that she would quietly pass in-utero, snuggled next to her twin brother under my left ribs, where she was most comfortable. My husband and I mourned. We withdrew from life, secluded ourselves, grieved, and slowly made peace with it, for the sake of our son.
When Anderson stopped growing at 32 weeks, an emergency c-section brought us the most life-changing experience imaginable. My twins were born…Anderson weighing in at 2 pounds, 8 ounces, Amelia—my miracle baby—weighing in at an unimaginable 1 pound, 1 ounce. 1 pound, 1 ounce for a 32 week baby is unheard of. Impossible, almost—every doctor we encountered declared that this was a first, something they had never seen. By chance, our city’s one geneticist happened to be at our hospital, and I thank God that she heard about the baby with Trisomy 18 and decided to examine her. She immediately announced that our baby did NOT in fact have T18. Words are inadequate to describe what it was like to be told that, instead of taking bereavement photographs and planning a funeral, our daughter would live. I can honestly say I’d never witnessed a miracle or “felt the hand of God”, but I experienced a miracle that day.
Amelia has an as-yet unknown genetic abnormality. At three, she only weighs 18 pounds. She has Dandy-Walker brain variant, kidney issues, and a CHD. We see lots of doctors. She also knows all of her letters, sounds, colors and shapes, has a fiery spunk and temper, and loves all animals. She is more than I could ever ask for. She LIVED.
After suffering through infertility for cycle after cycle, my husband and I were finally blessed with pregnancy. Our 8 week ultrasound showed TWO wonderful, healthy babies and heartbeats. Our 12 week ultrasound showed two wonderful babies, and one heartbeat. Needless to say, we were crushed. When I got home that hot summer day, I sat on my deck outside and cried. A butterfly came and sat by me. That was our other baby. Ever since, I am convinced that the butterflies that come around when I go outside are our son’s twin, telling us that we will be fine. And we are fine. Because life is more than missed opportunities and sad moments. Life is for living, and we are thankful every day for the wonderful little boy we were given.
2 under 2 wasn’t what we had planned on, but when we found out we were expecting our second child, we were thrilled. We wanted to be surprised by the sex of the baby just like we were with our first. I was sure I was having another boy so when Mallory came out, it took me a whole year to believe that I really had the daughter I had always dreamed of. The next 2 years were perfect. I had the family I always wanted. I felt so lucky.
It wasn’t until shortly before her second birthday that I started to worry. I am a speech therapist, so I’m more than aware of what is normal and what is cause for concern. I told myself I was just looking into it too much, that she was just a little late but she’d take off soon just like Max did. At her 2 year old appointment, we told our pediatrician our concerns and I watched as he stared at my daughter and started firing all the “red flag” questions at us. My heart sank and I knew that this was not just in my head and we had to take action despite the fear.
The year that followed has been full of assessments, IEP meetings, and therapies. Turns out, her languages skills were just part of the issue. My perfect 2 year old was scoring about 1 year behind in several areas. While we don’t have many answers for why she is developmentally delayed, we have done everything we can to give her every opportunity to catch up to her peers.
The hardest part for me was not only questioning the irony of me having a daughter with these difficulties when this is what I DO for a living, but also not knowing what this meant for the future. What I have learned is that no one really knows what the future holds. Someone could have their idea of “perfection” and it could change in an instant. Maybe Mallory will have continued problems with her language skills and other developmental areas, but maybe she won’t. Maybe school will be a little bit harder for her, maybe she’ll always be a little bit different, but maybe she’ll have no issues at all. We just don’t know and no one does. And how lucky she is to have her own personal speech therapist who is also her mommy-I couldn’t have planned that if I tried 🙂 Right now she is an energetic, thriving almost 3 year old who can’t wait for her Yo Gabba Gabba party next week. She is happy, she is beautiful, and she is mine. And I must add that her brother who has NONE of these developmental issues has been much more difficult to raise thus far!!
Thank you Kelle for changing my perspective on so many things.
As I read the last page of Bloom, I carefully smoothed the jacket cover, put down my highlighter and let the tears fall from my eyes as I reflected the words I just read. In some ways, my life turned out exactly how I had envisioned it when I would sit in my room, walls plastered in boy band posters and Spice Girls blaring on my boom box. I’m happily married, I have a rewarding career and I am the mommy to two beautiful little girls. What I didn’t imagine is the constant fear that my husband will go off to work each night and not return home. I live in fear because I am in love with a police officer. Each day I watch my girls wrap their arms around his neck and plaster his face with wet kisses, I hug my soulmate tightly and whisper “I love you. Be safe,” all the while wondering “is this the last time?”
There are days when my fear is palpable, where it consumes my every thought. I worry that my husband’s career choice will change the man that I love, that he will morph from a loving and devoted family man into a cold and cynical stranger that I no longer recognize. Worse yet, I’m petrified that someday we will become “that family.” The family experiencing true loss, experiencing heart wrenching pain, and having the “God-forbid-what-if” situation turn into reality.
But I’ve learned that even though my husband wasn’t born with a chromosome destined to make him a police officer, being a police officer is who he is and loving him, means loving all of him regardless of the what-ifs in our future.
http://www.katekranz.blogspot.com
My husband and I are going through IVF and have been trying for about a year and a half to have our first child. We have had 5 cycles so far with three positive tests and no live birth. One ectopic pregnancy, one chemical pregnancy, two transfers didn’t take, and the most recent was a miscarriage that landed me in the hospital at 6 weeks the evening of the same day I went in for an ultrasound and saw a beautiful gestational sac with a fetal pole and everything looked ok at that moment. This is definitely not the experience we were hoping for when we started this process. Honestly, growing up I never expected to be going through IVF. I am almost finished with your book and I just love how positive and real you write about your experiences. It’s so true that we have no control over this life but we do have control over how we handle each and every situation. Right now I choose hope. We are about to begin another cycle and as emotional as this roller coaster is I want to believe that one day when I hold my beautiful child I can say it was all worth it and I wouldn’t trade all the pain that brought me to that moment for the world. Thank you for helping me and reminding me that things may not work out the way we expected but they always work out and we are blessed because of our experiences.
Hoping to celebrate next Mother’s day with you Kelle, and all the other mommies out there!
March 13 2011, we learned that our son would be a big brother. We were so happy to be a family of 4. On April 6th, we found out we were expecting twins. We couldn’t believe it. We were surprised and overwhelmed! It wasnt what we planned but we quickly fell in love with our beans and couldn’t wait to be the parents of twins. I knew these little beans were changes our lives in ways we never knew.
When June 21st came we were so excited to learn the sex of the beans. Unfortunately, we learned that one of the twins stopped growing. We also learned that we were expecting a baby girl. I have never felt such sadness and happiness at the same time. We were excited and happy for our baby girl but heartbroken at the loss of our other bean. We decided to name the baby Elaina which means “ray of light”. She was our bright spot in a sea of sadness.
Nine days later and ultrasound, we learned Elaina had passed away at 21 weeks. I was so heartbroken I wasn’t sure how I could go on. I needed my sweet babies here with me. My hopes and dreams of our beautiful family of five were gone. It was such a dark time. Finally I decide I could be sad but I need to go on.
Almost a year later, I have discovered the purpose of my short time with our beans. To simply appreciate life for whatever time we have it. To find joy in the simple moments because that maybe all there is. I learned to love deep and hold that love in your heart forever.
My sweet babies taught me that in darkness there is always some light.
Thanks for the chance to share this story I have been thinking about how my sweet babies changed me in so many ways ever since I read your book!
Hi Kelle- Here is my story of finding the beauty in the unexpected.
In 2005 my husband and I were blessed with the birth of our first child, a sweet, happy boy named Addi. We loved our life as new parents and we would welcome our daughter Gigi in 2007. Our family felt complete with these two precious babies. In the Spring of 2008 we started to notice that Addi’s speech was not progressing as expected. We decided to have him evaluated for therapy. After confirming the need for therapy she looked at me (I’ll never forget it) and said “but I think there might be more going on besides speech”. She never said the “word” but the characteristics she described were for autism. At that moment, in that room, my life, our life as a family of four would never be the same. The days and weeks after that appointment were some of my hardest. I look back now and realize that it was a feeling of loss, a grieving of sorts. The loss of what we thought his life and our life would look like. The feeling that life as we knew it was forever changed. In 2009 an autism doctor did confirm the diagnosis. We had no idea what the future would hold for our little boy. Our journey is far from over, now just a little over two years after the diagnosis we are settling into and embracing this curve ball that we’ve been thrown. We feel so blessed to have our family of four. Addi has shown us that even though our family may not be like what we had planned it is better than anything we could have ever imagined. Addi is such a huge blessing in our life and has taught us how to find beauty in the unexpected. Addi will turn 7 this Sunday, May 13.
Thanks!
Andrea Gambrel
http://www.thegambrel4.blogspot.com
angambre@gmail.com
Kelle, I read every post, but have hidden in the shadows. My heart quickened when I read your invitation today. . . thank you for giving us all a chance to share our stories. Here’s mine. . .
It’s been two years since my life changed forever. Two years of being a motherless daughter. Two years since I’ve called to say hey, or to ask for the umpteenth time do I grill chicken on direct heat? Two years since I’ve sent a picture just to show her how the kids are dressed. Two years since I’ve wrapped my arms around her and felt her envelop me. Two years since I’ve heard her say we are so proud of you. Two years since her voice uttered, I love you.
It’s been two years since hope for her healing died.
It’s been two years since I’ve cried myself to sleep wondering if she will be okay tomorrow. Two years since she broke a promise. Two years since I’ve wondered will it happen today?
It’s been two years since we lost my Mom.
Two years ago I didn’t know how I’d get through it. Dad’s words, take one day at a time and before we know it, we’ll look back and be surprised at how far we’ve come. He was right. Two years ago I wouldn’t have guessed this is where I’d be.
Over the last two years my world has changed. My courage has grown and fears diminished. Life has become richer and love, deeper. In two years the preciousness of life has become more real and I’ve understood that we only get one pass through life. I’ve vowed that I won’t just pass through. I will live and live authentically.
So here I am. . . a Mom, needing her Mom. A daughter, missing Mom. The hurt is still there and the pain is just below the surface, but you know what? That’s okay. I’ve become comfortable with the crashing waves of grief. Comfortable with questions. Comfortable being me.
I no longer have a dad. He walked out of my life 3 days after my little girl (his only grandchild) was born. For 29 years I had a dad who instilled in me morals, values, a work ethic. I thought I knew what love was growing up, and I did. I grew up in a loving home with two parents and a brother who was (and still is) my best friend. I thought I knew what love was when I met my husband. And I did. He shows me that every day. Then I became a mom and everything changed for me. In those first moments of being a mother, I understood what it meant to LOVE. I have always cared and always loved. But not like this. The love I had for others was not diminished because I had this other little person that I had so much love for, but this little person expanded my heart, my ability to love and it magnified those feelings that were already in place.
In those moments of emptiness, confusion and anger, as I tried to grasp why my father chose to leave, I would burst into tears – a combination of hurt, hormones, and the exhaustion that comes with caring for a newborn. As in tears-streaming-down-my-face-gasping-for-air-nothing-pretty-about-it crying. I would look into my baby’s eyes, listen to her breathe and coo and think that life is all about perspective. I have this little person that needs me as much as I need her. We’ll get through this together.
All babies are a blessing, but my little girl became my rock. She became the reason to get up every morning, the ray of sunshine amidst the storm, the reason to move on and rise above a loss that I will never, ever understand.
Now my little girl is two (about Nella’s age) and she knows when I need to be hugged a little tighter. I had a moment in church recently where a tear slid down my cheek, she said to me “Mama, tissue.” Yep, Mama just needed a little tissue to wipe that tear away. The tear that reminded me how much love there is in my life.
http://www.angela-thesimplethings.blogspot.com
I’m still trying to find beauty in the unexpected. My daughter was born in June 2007. My son was born in December 2010. They’re both absolutely perfect. In November 2011 my husband and I were on our way home from a dinner date and hit by a careless young man in a hurry. I broke my back and my leg, and am now in a wheelchair with no feeling below my waist. I struggle to take care of my children, but am so thankful I am still here to tell them how much I love them and give out all the hugs I can.
Last February, my husband wheeled me off of the maternity ward empty handed. Our son, Tripp gave it everything he had for 5 days, but after all options were exhausted by his doctors, my husband and I made the most difficult decision we have ever had to make. We decided to let Tripp go.
I was forever changed that day in February.
The death of my son caused pain I previously could not have even imagined. I felt sadness in the deepest parts of my soul. I begged and pleaded for things to be different. Over and over I repeated, “It’s not fair.” I was angry and envious of other people’s blessings. I was truly devastated by the loss of my baby.
Then somewhere in the midst of my grief and guilt, I realized that although Tripp had died, I had to live. I slowly began to realize it was okay to smile and to laugh. It was okay to let go of my grief and live in the moment. In honour of Tripp I decided to do more than live my life. I decided to live my BEST life.
My life without Tripp can be hard. I have my moments, but I do my best to live my life to the fullest. And I am able to do this because of the depth of love I have for him.
The last 15 months have taught me about compassion, friendship, and love. They have taught me about life and loss and they have taught me that I am lucky. From those months I have learned that we are ALL connected. I am a better person today because of Tripp.
I only held my son in my arms for a brief moment, but the impact his life had will affect me forever.
I bloom.
Jordan Hamilton
http://jordan-hamilton.blogspot.ca/
At a routine 28 wk ultrasound, I was told my unborn daughter had enlarged ventricles in her brain, a condition known as hydrocephalus. It was an agnozing 9 weeks of knowing there was something wrong, of watching her chubby cheeks on the ultrasound screen twice weekly and knowing her brain was getting more squished every day and there was nothing we could do. Addison was born at 36 weeks 6 days and had surgery at 23 hrs old to place a shunt into her brain. 12 days in the NICU, which for a hydro baby is a short stay, we were home. Addison has done amazingly well. She’s only had to have one shunt revision (shunt malfunction is a frequent issue for people with hydrocephalus). I found your blog while I was still pregnant, read three lines of Nella’s birth story and had to stop. I couldn’t read it then. Not then. Not when I was so freshly raw and in the middle of the vast unknown of hydrocephalus. I found your blog again when Addie was four months old and have followed along ever since. I snuck to Target the first day Bloom was available, under the ruse of buying Easter candy, and opened it as soon as I hit the car. I cried at the dedication. I never thought I’d be a special needs mom… because I always knew it could happen to me. How’s that for reverse logic? But oh have I learned. And grown. How I love deeper and feel faith in a new fervent way. And I have Bloomed. My daughter will be one this month and I’m so thankful. So blessed to have her in my life. And together, she and I will bloom wherever her life takes us.
Aimee
http://youjustmightfindyougetwhatyouneed.blogspot.com/
Hi Kelle, I have been a reader for a while but this is my first time posting. Here is our story:
After going through years of infertility we were finally blessed with twin boys through IVF. Although born 5 weeks early they were perfectly healthy and got to come home with us.
A little bit after they turned a year old I noticed my one boy, Peter, was acting differently. He would no longer respond to his name and he was not picking up any new words. We got the news when he was two and a half that he had autism. We were shocked, sad, angry, every emotion in the book. But above all else we loved him.
He is four and a half now and still struggles so much. I feel like I don’t know the real Peter. Like he is hiding inside and we have to figure out how to draw him out. He finally started calling me mommy about 6 months ago. That is a moment I will always cherish. He has given me the gift of viewing ordinary things as extraordinary. I once heard someone say that with a special needs child you celebrate the inch-stones as well as the mile-stones. He has made some good improvements but still has a long road ahead. Although we will always push him to progress further I will always love him just the way he is. At his graduation I plan for him to have his own cheering section. =)
Just 3 weeks ago we found out his twin, Isaac, was also diagnosed with a mild case of autism. I know he is not defined by it though and we will be with him every step of the way.
Kathryn L.
Room 3425
Finley Renee joined our lives two and a half weeks early on December 9, 2008. The moment she was placed on my chest, I lovingly examined all 6 pounds, 14 ounces of her through tear-filled eyes. At age 35, I was finally a mom.
I don’t recall the exact moment my heart began to feel an unexpected ache. But in the quiet of Room 3425, my new-mom instinct overwhelmed me and I started to recognize that something about my precious baby girl was different. The baby I’d carried for nearly 9 months had eyes that were familiar in shape to the eyes of an actor I’d seen playing the role of “Corky” on the early-1990’s television series Life Goes On. And the ache in my heart intensified as I nervously wondered if anyone else had noticed. Hours passed when I finally asked the question, “Does it look like Finley has Down syndrome?”
The pediatrician confirmed my heart’s fear less than 24 hours later.
Had I known in the quiet of Room 3425 what I know now, the unexpected diagnosis of Down syndrome would not have made my heart ache. Finley is a gift. Down syndrome is a gift. And God knew it even as he formed her in my womb and safely delivered her to me. I no longer grieve the baby I thought I was going to have. Rather, I embrace and celebrate the baby I was meant to have in sweet Finley. She has helped me to be a more patient, understanding, flexible, and compassionate woman. And God used her diagnosis to bring me back around seeking Him in all that I do in my life as a mom.
Less than a year after Finley’s birth, God would once again challenge my reliance upon Him when my husband’s infidelity brought an end to our marriage. Sadly, Finley will never remember a time when she lived with her mom and dad together as a family. Yet I believe that Down syndrome will forever protect Finley from fully understanding the depth of this type of betrayal and the pain of divorce. God knew how to set the stage for what was to come.
Finley is now a healthy and happy 2-year old who just happens to have an extra chromosome. And for that I’m eternally thankful, for without it, she wouldn’t be my Finley Renee.
Thank you for reading…
Lindy Mertins
Mom to Finley (now 3 1/2)
lrmertins(at)yahoo(dot)com
http://www.somethingmoore.typepad.com
(Blog is private but login/password can be provided. Please just email me.
Hi Kelle, what a great idea! I’ve really been enjoying reading everyone’s stories. I know picking just four won’t be easy! 🙂 Anyway, just thought I’d share mine in the hope that someone going through something similar might realize that, like you, life can give you the unexpected, but bring out the beautiful.
….
At the age of 16, my body began to go through menopause.
Medically, my condition is called premature ovarian failure because basically, my ovaries stopped functioning, just like that of a menopausal woman.
Getting this diagnosis was actually not that tough at the time because I was young and way more considered about my social calendar than to give all of this medical stuff much thought.
My mom, however, was worried about whether or not I could have children. I was sad by the news that it wasn’t going to happen because I knew I wanted to be a teacher and have a big family. My biggest worry though was actually if I’d find a husband who would be okay with all of this!
Thankfully, I found my best friend, soulmate, and now husband during my freshman year of college. He didn’t even give the fact that I couldn’t have children an afterthought. “We’ll adopt,” he said. We got married a few months after graduation and that was that.
Our journey with adoption has been filled with many twists and turns, many of which we never in a million years would have expected.
After much yearning for a family and a very long wait, the joy and excitement we felt when we got “the call” that a birthmother wanted to meet us is, even still today, pretty indescribable. Then, seeing the birthmother’s courage and the tremendous love she had for her baby when she placed him in our arms is pretty indescribable too.
Her selfless love for her child made me mother.
Our hearts were overflowing with joy, but after four months in our loving care, the birthfather entered into the picture, wanted custody of our precious son, and my arms were empty once again.
It was the most difficult experience we ever had to go through in our entire lives.
After much time and healing, we went back onto the adoption waiting list. The wait was long, filled with many prayers and tears, and then finally- joy again.
At first we were only open to adopt a Caucasian child (thinking this would be easier for both the child and us), but by God’s grace, our hearts were opened. We changed our specifications to adopt any child, and exactly one day later our now son was placed into our arms. Our hearts were full once again.
I often think back to that 16 year old girl who was told she had menopause and never in a million years would I have ever imagined my life as it is today. I am beyond thankful, grateful, and blessed by this beautiful life I live. My past two Mother’s Day have been very special, but when asked what I want, my response is always the same- I’m a mother. Our little family is my everything!
I’m only 18, so I can’t share with you the stories of my first love or first child(ren). But what I can share with you is this. My whole life has been unexpected. I did not expect to be where I am now, nor should I be statistically. Born to a low-income mother and without a father, I have spent most of my life in the throes of poverty. I’ve moved 18 times between three different states, was abused physically and emotionally by my mother and sister, and spent many months wondering how long the roof over my head was going to last or if I was going to have dinner that night. Statistics for girls like me are not very good- in all honesty, I should be a dropout and have a kid. But I don’t. Whenever I was at the darkest times in my life, life always took an unexpected turn. Whether it was a friend suddenly saying my family could live with them, a new job for my mother, or a choir director that changed my life, things always got a little bit better. And when they fell apart again, a few months or years later, things got better. Now, I’m graduating from high school and going to college on a full ride. I always dreamed of the life I have right now, but I never thought it could happen. And for all that has happened, I wouldn’t change one.single.thing.
Elizabeth Del Debbio
This comment has been removed by the author.
Hi Kelle,
About seven months ago, I had my first miscarriage. About six months later, I had my second. The hardest part, beyond missing the babies I loved and desperately wanted, was accepting. Accepting that the miracle of life is completely out of my hands. Accepting that my dreams and plans may not come true – as I’d envisioned, as I’d expected.
Baby-making and baby-growing came quickly with our first two children, and we were very happy. Hopelessly and deliriously delighted with our babies, we wanted little more than to grow a too much noise, not enough room, great big messy, chaotically joyful family. We laughed about the ease of our blessings, and we never doubted that life wouldn’t continue on this way. And then, we swallowed that foot. Why, why, why isn’t this working? Why is this happening? What are we doing wrong?
Both times, it was hard being open, and it was hard keeping quiet. It was difficult to hide my pain. And it’s hard to admit that mine is not the saddest story ever told. Even if it feels like it – to me. Because it isn’t. But it is our saddest story. We still face the possibility that something is “wrong” with us…we can’t have more children…these precious dreams we have for our family are not in God’s plan.
This unexpected story broke me and turned me to stop calling the shots, let go of my expectations, throw my formal life blueprints out the window. And this surrender is a huge relief. Because I am not always right. My way is not always best. I must be open to a new plan: a plan built on faith and trust instead of misguided formulas for concocting “my perfect life”. He holds the map. I’m good with that.
Thank you for helping me to get that out. Thank you for your upward view on life.
Vanessa
http://www.plumcheeky.com
“You’ve had more than your fair share of heartache,” I often hear. I don’t know how to measure a “fair share,” because any share is too much. But it doesn’t have to be needless. It doesn’t have to leave a vacuum in its wake.
The details:
1. My husband is diagnosed with cancer at 27. I am five months pregnant with our first daughter. Declared cancer free after surgery, six months and a colicky newborn later, doctors find it spread to his lymph system.
2. Thirteen weeks into my second pregnancy–a miracle since chemotherapy leaves us without hope of conceiving again– a doctor tells me I likely miscarried. Ultrasound reveals vanishing twin syndrome, but there is still a healthy baby! Now high risk, there is no guarantee I will carry her to term.
3. A surprise third pregnancy brings a son into our lives. Three hours after his birth, he is diagnosed with Down syndrome. This time the grief cracks me open wide.
All this in five short years.
The truth:
Hardship doesn’t have to leave us empty forever. If you had a few hours, I’d share all the stories that took place between the lines: the way community heals; the way our daughter Emelyn Kate helped us fight cancer fierce because she made us a family, and that love bond was worth preserving; the way we rejoiced over Audyn Grace, because she was the baby we were told not to expect—twice. Joy and grace beyond measure–we might never have known you. And my Kaleb Matthew. His story writes deep on my soul, writes over my first fear. My boy of piercing blue almond eyes. His name means courage. It means gift of God. We named him Kaleb before we knew. We named him Matthew after.
Life is full of unexpected turns, some of them joy-full, others sorrow-full. But I discover I have a choice. What will I do with the heartache after its first piercing sting has passed? Will I allow it to write me, or will I craft a beautiful story over the pain? The lesson is needful; I learn again and again to cherish what is most important in this life: Walk by faith. Love deep. Choose joy.
http://www.morethanshelter.blogspot.com
Our House…More Than Shelter
When my first baby girl was 3 months 8 days old, I was diagnosed with Stage II breast cancer. I quickly had a double mastectomy and completed 16 weeks of chemotherapy. My determination to be “around” for my little girl to grow up was what helped me through those hard days of chemo.
Little did I know, that there was a “different” master plan for me! 11 months after my last chemo, I got pregnant with my 2nd child. It was kind of a miracle, considering the chemo had put me into premature menopause. On December 28, 2010, I gave birth to my almond-eyed beauty and was thrust into the world of Down syndrome. I now know that my breast cancer was meant for me to get stronger….to prepare me for Madison!
I have always been a type-A personality and completely impatient. Madi is teaching me to slow down and to see the beauty in everything around me. Thank you for being such an inspiration to me with your blog and your book. You helped me tremendously in the first several months of Madi’s unexpected diagnosis.
thejohannsens.blogspot.com
Kelle,
Your book made it’s way via Canada Post to me here in Pangnirtung, Nunavut Canada…. (think NORTH…like just shy of the Arctic Circle NORTH)… Just wanted to let you know that it’s made it’s way that far north.
I have been a faithful reader since I stumbled on your blog shortly after Nella’s birth. Even though I am single and have no children… I realized today after reading your book that we do have something in common…”the net” that group of friends that you talk about in your book, on your blog…
I talked about it today on my blog post… http://sarahontheroad.com/2012/05/bloom-finding-beauty-in-the-unexpected/
Thanks for sharing a part of your life…you give me hope that someday I’ll find that place that ‘fits’ that home…a family of my own. It’s out there…but in the meantime I’m going to continue to find beauty in the unexpected…and think about all the ways I have been totally blessed. Rather than think about a life I don’t have yet. I’m going to live in the present and be glad for it.
🙂 cheers,
Sarah from Pangnirtung, Nunavut, Canada.
I’ve always been a lover of love.
But it wasn’t until the past few years, that my heart and soul were opened to a new kind of love…one that runs deeper each day, strengthening my appreciation for what really matters.
In October 2009, my husband, Steve, and I began trying for a family. To become a mother has always been my deepest desire, so when a postive pregnancy test was staring back at me two months later, I was overjoyed. Crying and dancing around the living room as I aggresively dialed loved ones.
I miscarried. Heartbroken, but healed by love and the yearning to try again. Pregnant again in March, weeks passed and it began to feel real. It was twins. We miscarried on this very week two years ago. Devestated, but determined, we pushed on.
After a third loss, we met the wonderful man who is our reproductive endocrinologist. We received news that shook us to our core – my husband has a chromosomal inversion. The inversion carried in his DNA can cause genetic abnormalities, and was causing me to miscarry.
Our doctor wanted us to try again…introducing Clomid and IUIs. We went for it…being there was no other way in our eyes. I miscarried a fourth time. And two more times the following year.
As I type this, I’m newly and gratefully pregnant a seventh time. This time is different. Different taught us to expand our hearts in ways I doubt we ever would have if not for this journey.
We are pregnant through donor sperm.
I look back often. I don’t want to forget. I learned that good always outweighs bad. Love DOES conquer all. And when you’re faced with life’s trials, you can either let it get the best of you, or give it the best you got.
As I carry this life inside of me, I will carry the gift of patience, the power of faith, and the beauty of hope that has blessed my husband and I.
Maria
http://www.everydayisacountrysong.blogspot.com
*****
Thank you, Kelle. For sharing your heart, your gorgeous family, and so much raw and beautiful truth. I read one chapter of your book every few nights, as I’ve been savoring it and all your amazing words.
You are a gift.
<3
When my third son, Isaac, was born with Down syndrome, I wasn’t thrown for a loop as many people thought I should have been. Although I had no medical indication of his diagnosis before he was born, I didn’t struggle with the thought that this baby was different. When I held him in my arms in that quiet hospital room after everyone else had gone, I gazed at his sweet little face and all I could see was my wonderful, darling baby boy. I already had my degree in occupational therapy, and I took much joy in helping Isaac stay nearly even with his peers in milestones like rolling over and sitting up. It was as he grew older that the realization started to settle in. He was going to struggle in life. He was falling farther and farther behind his peers and he would keep doing so as he grew. It was then that I realized how much I was going to be struggling along with him. I would be by his side as his cheerleader, his advocate. I would be his eyes, pointing out the step off the curb that for some reason he could never see. I would be his voice as I learned to communicate with him through sign language while no one else around us know anything but the most basic signs. He is now eight years old and is talking more and tripping less. I’m so glad that I gave up the ‘comparison game’ long ago and learned to focus on the love that is being given and received every day. In doing so, I can see the absolutely precious gift that has been given to me. Having Isaac has changed me to my very core, and I am thankful beyond expression that he is mine.
Ambra Taylor
lovelandtaylors.blogspot.com
Support.
When I went in to the hospital to have my daughter Ola I wasn’t expecting her diagnosis of Down syndrome. I told my husband not to tell my Mom or my brother and his girlfriend before they got to the hospital, I needed to do it in person, I wanted to see their reaction to our news. I was so incredibly thankful and relieved when they responded with love and support.
I remember being mad that they were the only ones who came to visit us at the hospital, and then remembered that I was only there for 18 hours.
Whenever I think back to those 18 hours in the hospital I think of the word alone, I was scared and while my husband had a church to go to for support, I leaned heavily on my Mom. She was my rock, I cried, she listened, I cried some more and she listened harder.
Two years later, and my Mom is still my number one, and while she doesn’t know what it’s like to raise a child with a disability she now knows what it’s like to raise a daughter that has a child with a disability 🙂
I came home tonight to her curled up with a book on my couch. She watched my girls while I met up with 14 moms that I met on a facebook Ds parents page.
When I sat alone and cried in my hospital room 2 years ago I never thought that I would be making so many new friends out of a diagnosis that scared me so much.
I can’t think of a better way to pay tribute to my Mom this mothers day than to share with you here how much I (and my girls) absolutely adore her!
Love you MOM!
Leanna Maksymiuk
http://www.pootandboogie.blogspot.com
A phrase I came up with the past month…”Rockin’ the Ugly” I am finishing up my MSW degree (master of social work) and knew that my initial motto for this semester (Finish Strong) was not going to carry me to the finish line. We have a wonderful basketball team, but the coach has occasionally made the comment that even thought they won the game, they were pretty ugly out on the floor. Two months into my grad. level education, we received my 7 and 9 yr.old great nieces to raise. Our empty nest was now full of not only the laughter of little girls again, but also the tears and anger from the crisis and all the other crisis that erupted all around the family due to the issues involved. I was no longer able to make school my highest priority, and it shows. However, I struggled on and through and this weekend will finally achieve my long awaited diploma. My last semester especially hasn’t turned out very pretty, but I persevered, didn’t quit and will march proudly across the stage on Friday…”Rockin’ the Ugly”!!!
Hi Kelle! Life for me is nothing I envisioned as a bright eyed little girl ready to conquer the world. If you asked me what I was going to be when I grew up when I was ten, I would tell you that I was going to be President of the United States, a lawyer, and a mom all at the same time. I ended up becoming a rebellious teenager that was heading down a road of destruction very fast. I was that girl in high school with the black combat boots up to my knees, grunge dresser thinking I was too cool to hang out with the kids in my highschool. I was too mature for highschool kids, so I thought. But God had plans for me that I knew nothing about as I was suddenly in a Biology class falling in love with the highschool quarterback. Yes, we got voted most unlikely couple at the end of the year. We also both ended up giving our lives to the Lord Jesus together, and He has since been the Author of our lives. We are forever grateful. And we have learned that life is nothing what you envision, but for us it is SO much sweeter because we have hope in Him. And He has carried us through our truly darkest hours. We had toxic mold poisoning in our home in WA finding out our bodies were filled with poisons from spores we were inhaling daily as well as our precious kiddos. Last summer, my body began shutting down as I encountered something that we still are unsure of exactly what it was. At the same time, all of my six kids got whooping cough and were having severe episodes of losing oxygen. We were not sure if I was going to make it from day to day for a long time. It was so devastating as a mommy because I had six precious kids that needed me. One of those beautiful kiddos is our baby with down syndrome. He was something else we never expected, but there are no words adequate enough to describe how much love we feel for him. I know you know!! (also our first baby born at home, another thing I never would have envisioned doing). My kids needed me, and I was unable to take care of them the way I was suppose to as their mommy. My heart was breaking. I was housebound for months unable to even be around something as simple as ink from a pen due to the chemicals. I was having serious reactions to everything. But God carried me and held me up. He sent me help in most unexpected ways, and what I have learned, well, that is a whole other story. But I can say compassion is big on that list. And I have learned how to sincerely mourn with those that mourn and rejoice with those that rejoice. I have learned that God is always good, and He hears those deep cries of our heart when there are no words to express the anguish. I have learned that there is hope in affliction and love knows no bounds. I have learned to never judge another person no matter what. I have learned to enjoy the small things as you would say it. And SO much more. I am SO thankful to be here today doing all that I can do right now. It is literally a miracle that I am doing everything I am doing today. I am thankful!!! And my desire is to seek the broken hearted giving them hope in the darkness and help lift them up.
As I write this I have an 11 day old baby fast asleep on my chest. I started reading Bloom about a week before my due date and was mostly through it by the time I gave birth on April 27th (in fact it was even there in the hospital with me in case I had some time)! My whole pregnancy had been a complete breeze- no morning sickness or anything and everything came back normal with ultrasounds and tests. My husband and I had tried for almost two years to conceive so when I got pregnant it was amazing! I ate mostly organic, cut out caffeine and tried to do everything right. I even went as far as to not chew gum as it has aspartame in it and I was not sure if that was ok for the baby. When Elias was born immediately something was wrong as he had aspirated meconium and therefore was not crying. The NICU team was there working on him and then when they went to weigh him they found a lump on his spinal column. He was transported to a hospital 1 hour away with a neurosurgeon and we drove up for the week he was in the NICU. He has lipomyelomeningecele which affects 1 in 10,000 babies and has no known cause. He will have to have surgery when he is 9 months old to try to correct it however he will be monitored all of his life. God used Bloom to remind me that we all have unexpected things and it helped make me feel not as alone. Our friends and family have rallied around us and I know that much good will come out of this as we continue to trust God. I am so thankful or my son.
I have not finished your book. In fact, I just bought it today. My sweet hubby heard me say something about your book and as he is away on an army assignment, he said he went on amazon to find it and couldn’t remember the name. So he bought me a kindle fire instead as a Mother’s Day gift, but the surprise (he knows I LIVE for surprises) was spoiled when he forgot the email was sent to me of the purchase. He told me he wanted me to be able to download this book as the first book. It arrives tomorrow. But I couldn’t wait. Two nights ago I went onto my local Target website to see if they had any copies. It said limited supply. I couldn’t wait until morning came to go get your book. I scoured the book section and was disappointed to see nothing. I live in Hawaii and thought, maybe they haven’t shipped here! I was going to leave but felt something to go and ask. I have learned NEVER pass up a feeling. They said they did have one copy left, in the back, and that they wouldn’t be getting anymore in. That copy was specifically for me. This I know.
I have been writing a book the last 2 months. I too, always felt like I was suppose to write a book. Never has that impression been stronger than now. I am a Labor & Delivery nurse by trade for the last 9 years. We just moved here 5 months ago with the military. I have my Hawaii nursing license but have felt “do not go back to work yet”. It is my passion, but so are my 3 beautiful boys. I have been prompted… write the book now, spend time with your boys, going back to work is not for you right now. This is the first time we haven’t needed my paycheck miraculously, in the most expensive place we could live! This road has been paved to lead me where I am today.
And that is to write my book about my mother and how mental illness has torn apart my family, but not me. She is bipolar, has had 9 kids, and instead of being the “perfect cohesive family” she tried to portray publicly growing up… It has finally torn us apart. I am a carbon copy of you. I have been through so many trials unexpectedly but I have never found but the positive in them as it has shaped my life and who I am. I guess you can say my book is in essence about not listening to the voices around you telling you who YOU are… But listening to your own voice. You are the only one who knows you and you are the best at being you.
I read through pg 10 tonight and then broke down sobbing, as probably an insignificant phrase in your book hit me, ” “I need Carin. Now.” My sister was my
rock…” and as I sobbed, I wrote another chapter or two of my own book. I have never had that consistent rock in my life, except my dad. I HAVE always been the rock. My dear sister who I am close with on and off, suffers from bipolar as well, so it is always rocky. I also heard Nella’s voice inside your sentence as well. She said, “I need Lainey. Now. My sister IS my rock…” and God granted you dear Kelle… Nella.
Tammy {www.claridgearmyof5.blogspot.com}
I am so sorry, I know I already wrote a book on my previous post. But I forgot to mention that another reason I am writing my book is because despite my mother never “being a mother to me” because the effects of bipolar disorder, that one trial growing up, has made me become the BEST mother to my boys. There has been beauty in my pain… And my boys have not known anything but immense love from their mother, the way Nella knows it. Every child deserves that and the kids who grew up with mental ill parents need to know… they are truly loved, they just might not know it. It is NOT them, but the effects of a silent disease.
My story is a little different than most posted here.
I was molested at age 7 by a male relative. It went on for a while, maybe a year or so, but I thankfully don’t remember much from that time period. I kept this secret from my parents for 4 long years. In the meantime he moved on to other victims. Every night after my mom put me to bed, I would walk the hallway outside my upstairs bedroom, wondering how I should tell her. I have never felt such loneliness as I did in the dark, pacing that hallway. In the end, my youngest sister did it for me.
Throughout middle and high school, I had myself convinced that what happened to me didn’t matter and that I was okay. My parents were doing their best to restore normalcy to our lives and just didn’t know what to do. Eventually we all just played the game – we didn’t talk about it and pretended everything was fine. And it was fine until my junior year of college. The stress of living on my own, while balancing a job and an intense nursing school program, got to me and I cracked. I thank God every day for my husband (then-boyfriend) Jared. He was my rock. He encouraged me to talk, held me when I couldn’t, and helped me find a way to finally deal with my past. Through a couple years of different kinds of therapy, I was able to finally talk about the abuse with my family and we all began the healing process together.
A few years ago I wouldn’t have been able to write this. I had to work hard to forgive that 7 year-old girl who was too scared and confused to speak up and protect others. I had to forgive my parents for not knowing how to help me at the time. And I had to forgive my abuser in the best way I knew how, and it is still a struggle some days if I pause to think about it. But I no longer wish it didn’t happen. It changed my life, but I am the strong person I am today because of it. I am a different mother because of it. Maybe it happened to me so that I will know how to protect my daughters, so that it never happens to them. I now know that whatever life throws at me, I am strong enough. And I will bloom.
Vanessa
http://www.solkoblessednest.blogspot.com
My post is too loonnnnng! PLease visit my blog: http://batteredbook.blogspot.ca/2010/10/death-story.html
Thanks for reading.
Rosie
I too, have a special child. We knew trying for a boy after two girls would be hard but never could have imagined the ups and downs that would come with our son having cleft lip and palate. I too, grieved for the loss of my perfect boy. We went thru all the natural grieving processes until we were ready to accept it and make a plan. A plan that has proven to be the hardest thing as parents we have ever had to do. His perfect lip was repaired when he was 4 mons old. That surgery and recovery seemed difficult, little did we know. He is 13 mons now and 1 week post op from having his palate repaired. A surgery that took 7 hours to complete and lots of complications after. He stopped breathing and turned blue immediately post op. We then spent 3 days in icu. I thought that was hard, nope, being home has tested all my mommy strength. He has hit, kicked, and spit his frustrations all over me. Feeding and sleeping are an everyday struggle. My happy boy has been taken from me and I long to have him back. He is a child that has truely tested my every strength and yet completes my life. These special kids have a greater purpose in this life that we may never fully understand, and yet somehow I am blessed by my little fisty man! Check us out at http://www.mommyetue.blogspot.com. Mommy– Jayne Etue from Michigan
My husband Justin & I had been trying to get pregnant for 3+ years. After many trips to Carolina Conceptions, a practice dedicated to fertility, we were at the point of having to try IVF. Unfortunately, IVF just wasn’t in our budget ranging anywhere from 15K – 20K. Thankfully, I heard about the Pay It Forward Fertility grant. It was created to give hope to people who want to build a family (http://www.payitforwardfertility.org/). So in September 2010, I filled out all the paperwork needed to apply for the grant and sent it on its way. The recipients of the grant would be announced in about 5 months. There was an overwhelming amount of applicants and only 2 were to be picked. Finally on January 12, I received the best call ever for Robb & Lori Moscato, the founders of PIFFF. They called to say that Justin & I had been 1 of 2 couples to receive a grant! We had been given new hope that our little family would some day include a baby! We scheduled our IVF appointment to go over all details with CC for Tuesday February 8th. Well, as luck may have it, I decided on the Monday night before our appt that I needed to take a pregnancy test. I had been feeling completely off. After waiting 3 minutes, a plus sign developed in the window!! I was able to email Dr. Park at CC and tell him what had gone on. He asked that I come in before our actual IVF appt. to have blood drawn. Dr. Park sat there with Justin & I and went over the details of an IVF round. About an hour later the doctor came in and said my HCG levels were already really high and we were definitely pregnant!
http://justinandstephaniecrooks.blogspot.com/
The Big 3-0
On July 7, 2011, three of the most important men in my life and I went to a routine anatomy scan at my obgyn to see whether the little peanut in my belly was a boy or a girl. See, with 4 boys ages 9, 7, 4, and 2, we were quite eager and hopeful for a little princess. While our at the time 3 and 1 year old little boys watched the magic wand wave around over my belly, our technician happily congratulated us on the little girl to be, however her mood quickly turned somber as she could not accurately measure all parts of the baby and we were recommended for a level 2 scan. On July 9th, we celebrated my 30th birthday. We had friends and family over, celebrating not only my 30 years of life, but the pink little life growing inside of me. On July 11th we were sent for a level 2 ultrasound only to find out that our little girl had Spina Bifida and Hydrocephalus. So it came to be that the princess we had always dreamed of was an extra special one at that. Pregnancy continued fairly well, however we were constantly scared of what was to come. Annabeth Hope was born November 18, 2011 at 10:55 am. Daddy was able to hold her despite the sac filled with spinal fluid and spine on her lower back. 16 heart-wrenching days were spent in NICU. Although Annabeth’s first Thanksgiving was attached to wires and machines, there was still so much to be thankful for; we chose life. What her future entails is questionable, but what we do know, is that as unexpected as this diagnosis was for our family, she is everything beautiful in our lives.
Kelle,
Your girls are beautiful and have brought so much happiness to people they don’t even know! i.e. me.
My story-
I found out that I was pregnant two months into a new relationship at the age of 20. It was the most scary, confusing, and unreal day of my life. After the man that I was blessed with said, “Let’s do this, let’s be a family, and raise this baby together” (totally a babe thing to say:)we decided to continue with the pregnancy that definitely did not come without its challenges. Besides being in a bit of emotional turmoil, I was very very sick, and my baby tried to come early at only 7 months. I was put on bed rest for seven weeks and then day finally came. Labor went mostly smoothly until he came out with a knot in his cord and it wrapped around his neck. He didn’t cry right away and we were so scared. Luckily he was able to go home with us right away, and is now an active almost two year old and his father and I are happily married for almost 2 years.
My son was just diagnosed with sensory processing disorder (sometimes linked with Autism) most likely due to the knot in his cord and the oxygen deprivation. We have just begun the journey down the road of weighted vests and lap belts but at the end of the day, he is just my sweet little man that loves to make people laugh, who loves to race down the slide with his daddy, and who gives the very best snuggles. This journey was not one that I had planned for myself, but it truly is amazing.
Thanks for reminding your readers a few times a week to look for the unicorns in life.
Lyndsey Lucas
These stories are amazing! There are so many strong and resilient women in this world. Thank you Kelle for inspiring all of us to take care of ourselves and keep hope alive for a better tomorrow. As we’ve read here – so much of life is attitude. Some days having a teenager with Down syndrome seems tough – but I have NOTHING to complain about when I read what some of these women have endured. Happy Mother’s Day to everyone.
My mother was diagnosed with stage 4 lung cancer right after my 22nd birthday. the cancer had already spead so there was nothing more that they could do and we knew our time was limited. Devestated wouldn’t even begin to describe what I felt. I was only 22 and we had just begun having that adult relationship with your mother. I needed more time. We did have 10 more beautiful months together. She made sure everyone that was important to her knew it. We spent a lot of time with each other just being together and I will cherish that for the rest of my life. A couple days before my mother passed, she kept telling us that she had to leave to go get a baby. We didn’t know what she meant until a few weeks later, I found out I was pregnant with my first son. Even though she had to leave us, she left us with a gift. I gave birth to a beautiful baby boy, 9 months to the day she passed. I was now a mother myself. I feel like the sadness I had to go through with losing her only made me a better mother. I never want to take anything for granted. I want my boys to know just how important they are every single day. My son even has a special connection with my mother even though he has never met her. When he was little, he would tell me that he had an angel that looked like me watch cartoon with him. My heart swells thinking that she could be that close to us watching over us.
When my first son was born he had a giant bruise on the back of his head. It set off every mommy alarm in my head. The nurses all brushed it off. Shawn’s was only 3 weeks early but he wasn’t breathing well and had to be admitted to the NICU and be intubated. While checking him in to the NICU I kept asking them about the bruise, could that still be bleeding? We found out that the bruise was superficial (not a brain bleed) and they did some blood tests. By the time discharge came from the NICU (at 10 days old) we had a tentative diagnosis of ITP but the doctors were puzzled because there is no known genetic history of ITP in either mine or my husband’s families.
There were a lot of blood draws, poking, prodding, talking, praying, and even a bone marrow test. It was finally determined to for sure be ITP. The doctors had no idea why my son had it or what his life would be like. We spent a lot of time on Google learning about petechiae, brusing, and nose bleeds. Overtime Shawn’s platelet counts came up to a non-dangerous level.
We welcomed Steven into this world in December of 2006. My pregnancy with him was closely monitored via ultrasounds to make sure there was no potential bleeding. Steven was born via a scheduled C-section (to prevent any potential internal bleeding on his part while going through the birth canal). I had the doctor order a platelet check immediately and it was determined that Steven also had low platelets.
Both boys have heavy bruising and regular nose bleeds. My husband and I deal with regular glares from strangers. I assume they think we beat our kids because of their bruising. But we have learned to brush it off and move on. It can be scary. I could easily cripple myself with fear but, instead I chose to enjoy every single day with my boys. Their diagnosis is not something we live by and it doesn’t define us as a family. But it has taught us to not judge a book by its cover and to embrace the unexpected.
Life threw me a crazy curve ball, so it is a good thing I am a home run hitter.
At the age of 18 I was shocked to find out that I was pregnant, everyone around me including my now hubby of 7 years embraced it and supported me. I grew a lot emotionally, physically, but it wasn’t until my second son was born right after my 21st birthday that I would truly be a changed person. While pregnant with my son Maverick, it was found that he had an irregular heart and with out earlier testing it was hard to see what other complications would come with it after delivery. There was a lot thrown out there, but when he was born 9-15-07 he was perfect. Fast forward 3 years, my 3rd son was born, life was hectic, but I couldn’t get enough of it. Maverick at age 3 was still non verbal, extremely aggressive, had an extreme obsession with food and we were lost. After getting him assessed and properly placed in a school fit for children with special needs, he is a thriving (almost) 5 year old. Through our journey which is far from over, Maverick has gifted our lives with much more than his presence. He has taught us patience, courage, good character, and that love doesn’t come from the words we speak, it is unconditional. He has made us a stronger loving family and by far better people. As a pregnant 18 year old almost 7 years ago I would have never imagined my life this way. The best part is I would not change any of the paths we have walked on throughout our journey as it has taught my children, husband and myself life lessons we could not find anywhere else.
Abby V
My biggest challenge in life so far has been fighting infertility – and winning the battle out of sheer determination and my refusal to give up on my lifelong dream of becoming a mom. My husband and I married at 32 and immediately started trying for a baby. Six months later, we learned we were both infertile. After three more years, four rounds of in vitro fertilization, thousands of borrowed dollars, and lots of tears, our first son was born when I was 37. We named him Ryan, which means “little king” – and he was, and is, a dream come true. We wanted him to have a brother or sister, but knew the odds of success were long since we had such trouble the first time and we were even older now than when we started. So after two failed starts at IVF, we decided to give it shot with donor eggs before moving on to a potentially long and costly adoption process. Thanks to the kindness of an anonymous stranger and a big fat loan that we’re still repaying, I got pregnant with my second son and gave birth at age 41. My amazing sons are now 6 and 2, and I am so grateful for them every day. Both my boys would not exist if we had not been willing to risk everything to will them into being. We have tons of debt, but lots of joy. They were worth it all – the tears, the money, the struggle. They are perfect just the way they are, and they wouldn’t be who they are if they had been conceived any other way. I would do it all over again in a heartbeat.
Kristy Lynne
Since 9th grade, I’d been ranked first in my class and I was on my way to UCLA in the fall. During my senior year, I started showing signs of pregnancy. I refused to take a test until I was 12 weeks pregnant. I decided, with my boyfriend’s support, to terminate. I scheduled an appointment, skipped work to show up at the clinic and sat in the waiting room for an hour.
As my boyfriend and I sat there, we looked at the signs against abortion. First were baby’s tiny little fingers and toes. Second, his due date was 12/11 while my birthday is 11/12. Third, I lost my wallet the week before and I needed a form of identification. Lastly, when I got tested the clinic showed us a heartbeat, a heartbeat that touched my heart. After finding out, I was floating with joy. And so, we bolted. We walked to the park carrying our fears of parenthood.
I went to UCLA, I went into labor during finals week and Ethan Ray was born, all 6 pounds and 10 ounces of him.
A lot happened between then and now, but Kelle’s blog and Bloom catapulted me into being a better mom. Life is not handed to you on a silver platter; rather you’re given some of the ingredients and you have to decide what to do with it.
Now, I am proud to say that I am a 22-year-old mother of a 3-year-old boy. I graduated from UCLA in 3 years and now a graduate student at CSULA. Life may not be what we expected, we don’t have a house or a little backyard, we have to spend time on homework when all we really want to do is play with our son, but I, my boyfriend, and our baby are making the most of life: art projects, adventures, and lots of love.
Sharmaine – my blog is closed at the moment.
Thank you for the opportunity to share our stories with each other!
My story began when I found out I was pregnant with my second child. Our first daughter (via IVF) was only 3 months old when I got pregnant with our “miracle” baby. It was a huge shock but we were thrilled to add to our family again.
Hadley’s first 6 months of life were considered normal. She was thriving in all areas! Shortly after we introduced baby food she refused to eat. By age 1 she had dropped 2 lbs. and was behind in her gross motor skills. We spent time in the hospital and many tests were run. We were released without answers and pursued some additional testing on our own. Nothing abnormal was revealed. We focused on feeding therapy and PT and did see some progress. At her 18 month check-up in March she hadn’t grown in height or weight at all. I was startled and demanded more tests! My mama gut told me something was very wrong and it had been telling me that for a long time. Blood tests were run and came back abnormal. We were referred to a pediatric nephrologist (kidney doc) for more testing. A few weeks later our lives changed forever! Our daughter was diagnosed with a very rare genetic disease called Cystinosis. There are only 500 cases in the US and 2000 world-wide. There is medication to treat it but currently no cure. Hadley takes several medications and they are given through a g-tube every 6 hours. She’s starting to gain weight and is eating better. She even took her first steps at 20 months of age last week.
While this disease is very serious and we are still learning to accept our new way of life, we have chosen to live for today and enjoy our daughters! We have hope for a cure and our lives are filled with happiness.
Kelle, you have been a huge source of inspiration to me during some tough times and I’ve even written about you on my blog. Thank you for reaching out to so many people through your words and pictures. You make a difference!
http://bencu.wordpress.com/2010/02/11/wow/
http://bencu.wordpress.com/2012/03/23/words-of-wisdom/
Thank you,
Marcu (Hadley & Stella’s mama)
Wow. Who knew how much the human heart could care for “strangers”, I have cried and cried more. Kelle- look how many lives you touch and inspire every day and how very much your sunshine is needed. It is going to be hard to choose just a few, huh. I hope the little girl Katy, waiting for the heart transplant makes it in, not that this is a vote. Love the camping pick, can’t wait to hear about it! You are such a beautiful soul, thank you for bringing these lives and their stories to us all.
At 24, I was drop-kicked out of “ShelterLand” and landed with a resounding, yet ungraceful, boom in “RealWorldVille”. When my (now) husband proposed to me, my biggest dilemma was how to study for the Bar exam when I just wanted to plan a wedding. Then my mom (and best friend) got sick. Really sick. My idyllic, if boring, memoir took a sudden turn and I found myself living in a mystery novel – “Things That Happen to Other People.” Weeks before the wedding, my mom confided in my dad that she wasn’t going to make it (he thought she was waxing sentimental about life), but she made him promise that the band would go on – that we would dance. She died exactly 2 weeks before my wedding – the ensuing pain is pretty self-explanatory. Slowly but surely, beauty bloomed out of this heartbreak. My husband stood by my side on the single worst day of my life, and only two weeks later, he stood by my side on the very best day. Most people go through pre-marriage counseling, my husband and I went through a pre-marriage war. Deep in the battle field, his true colors came shining through. The strength of his armor showed me that, even in the worst times, he would always be my knight. Two years later, I was on the fence about TTC until I realized that, if I was going to love this baby enough to honor her with my mom’s name, then what the heck was I waiting for, I wanted to meet her already. So I did. And now I have my precious little girl – my final (and very best) gift from my mom. I can only hope that, somehow, she knows my little girl, and she, too, found beauty in the unexpected.
My Mom had her first open heart surgery at 35, her second at 40. When her and my Dad were both 43, we found out he had leukemia.
Just 7 weeks ago, my Mom had a hemorrhagic stroke due to being on blood thinners from her heart condition, and had to have emergency brain surgery.
That same week, my Dad had to start chemo again because we can’t find a match for a bone marrow transplant.
Every day, no matter how he feels, my Dad has been at my Mom’s bedside. He’ll go to work, go to his doctor, and then sit with Mom. The doctors and nurses know our story, and they take care of Dad like they do for Mom. I have pictures of them sleeping together, Dad in a chair with a mask on to protect his immune system, Mom curled up on her side, them holding hands.
They’ve been married 29 years. They have gone through more than any other couple I know, and they took the “in sickness and in health” literally. Just seeing them together, holding hands, laughing, making the time better in the hospital makes my heart hurt in a good way – and I can’t wait to have a relationship like that. They are there for each other through everything, no matter what, and it’s beautiful. Dad tells Mom how beautiful she is with her head shaved, face swollen and bruised. Who would have ever thought both of my parents would be sick? Watching them and knowing what they have gone through gives me hope for my future, their future, my brothers’ future. That no matter what comes our way, we have each other, and it’s beautiful.
Sianna Weber
http://www.caringbridge.org/visit/dougweber
We call it the club nobody would choose to be a part of. We morbidly refer to ourselves as deadbabymamas. But if you want to talk about finding beauty somewhere I never expected it, it is DEFINITELY in this group of amazing women.
When my second son was stillborn at 35 weeks, I didn’t think I would be able to get out of bed again. But then these voices came to me through my computer, offering love and support and, most importantly, understanding. They had all “been there” or were going through something similar. They promised me I would get through the pain. But more importantly, they told me I was not alone.
That was seven years ago this Friday, May 11th. Last weekend we had our 3rd annual get together. We ate good food, drank good wine, and shared laughter (and a few tears).
There is comfort in knowing these women…being in their company…knowing that we have this common bond. But years later, there is more. We all have different stories, different personalities, different lives. But we know each other as women, mothers, sisters, daughters, friends, and so much more. At first we shared grief as a way to ease the sadness. At first it was about clinging to one another and helping each other get out of bed in the morning. Now it’s about truly liking each other. Now it’s about friendship and recognizing the beauty that grew out of the pain.
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This comment has been removed by the author.
I live every day with the biggest disease that no one knows about. I have Hereditary Neuropathy, or Charcot Marie Tooth. And it has nothing to do with teeth. The name was chosen by the doctors who discovered it. Believe me, I wish they had better names.
I was born different. No one knew at the time. I walked late. I was clumsy. I slept a lot. I was also happy, fun, and resilient. My parents took me to doctors for answers, but no one could figure me out. I was told to try harder, pay attention, and believe in myself. Of course, none of those things helped.
When I was thirteen years old, doctors finally gave me a diagnosis. I had a genetic disease that was incurable. And degenerative.
For the next twenty years, I hid my challenges. I fought for ‘normal’. Sure, I was exhausted and struggled through the day. But no one could tell I was different. I wanted, so badly, to be like everybody else. I married, taught full time, and had my beautiful daughter.
‘Normal’ fell apart when I was 33 years old. I got arthritis in my high-arched feet which caused pain all day every day. My fingers went numb for months.
I had a choice. Bury myself in loss, or rise up and dance the path before me. Disability doesn’t have to be tragic. Disability can celebrate limitations. Disability can be strength, creativity, and compassion. Embracing Disability means embracing my true self. Stop apologizing. Start educating.
When we change our thoughts, we change the world. The world will be a better place. All that we need to do it take the leap. Tell the story. And believe.
http://lenkaland.com
The biggest hope in our community (besides a cure) is that the world learns about CMT and understands our challenges. CMT information at:
http://www.hnf-cure.org/
http://www.cmtausa.org/
As a child, I had a mental checklist of things I would never, ever do. I would never drop out of school. I would never move away from home until college. I would never have a baby before I was married, I would never get divorced. I would never be a single mom. I would never move backward. I would never have a child with special needs. I would never do a great many things that I viewed as negative, ugly, difficult and shameful things. As my life grew and changed, I made new lists. I would never reconnect with my family. I would never finish school. I would never find a man who loved me. I would never have any more children. I would never know God’s true mercy.
Wouldn’t you know I have done just about everything on that list?
And little did I know that once I became mama to my son, and then my daughter, and their daddy left, little did I know how much I would grow, and bloom. I graduated university. And gracious–little did I know how much I would grow and painfully stretch and bloom even more greatly, with more fervor than when my wonderful new husband and I welcomed our fourth baby onto this earth complete with his extra chromosome, his need for surgery, and Lord! All of his magic, his grace, his beauty.
We more than bloomed where we were planted. We flourished. We exploded. We are abundant with joy. We are so much more than we could ever have been without where we’ve been. I thank the good Lord every single day for His goodness and mercy. We bloom, baby. We bloom.
http://www.lauraluyt.com
Hi Kelle, I have been reading you blog since my friend posted a link in Facebook back when Miss Nella was born. I only commented that one time, anonymously.
Today, I thank you for the chance to share, not because of the chance to be picked, but because as a momma of kids with needs, I have enjoyed hearing another strong, powerful momma voice that celebrates the beauty in this life.
Motherhood needs all the strong, positive voices it can get, so thank you for being one, and thank you for sharing your world.
Becoming a mom has taught me to redefine perfection. Where I once thought perfection meant; without flaws, I now know that perfection means to be exactly as you should be.
Motherhood gifted me with the perspective to embrace the strengths and challenges within each of us.
It has taught me that a medical diagnosis is not a definition of a person, but rather a small part of a more complex and beautiful whole.
My kids are not Tourette’s or Autism. They are not learning disabilities or absent thyroids.
They are amazing humans, that at a young age have learned to; ‘Love the life you have; Love the skin you’re in; Live in the moment.’ It’s a family motto.
They are funny, loving and so silly. Graysen has a giggle that gives your heart wings, and if you are lucky enough to be held in his eyes, he will melt you.
Caylen performs onstage and owns every single movement his body makes, he puts himself in others shoes with a level of empathy that is beyond his years.
Lorelei, is the boss of her big brothers and speaks in a way that makes us wonder if she is an 80-year-old woman who returned for one more wild ride in this life.
In our home, laughter is required, courage and persistence is a necessity and pity is uninvited.
To those who define our children by their labels, I am sad because they have been blinded and they miss the amazing humans before them.
I have learned balance, in being trusted with these little humans. Where once I shunned labels in a mindset that I would not allow a word to define them,
I now recognize that these are just words, and only hold the power they are given.
It is my job as momma, to show the world the beauty in these words and teach my children, as they grow, to do the same.
April 22, 2008. The day I became a mama.
I was 33 weeks pregnant. Not ready to have a baby, but she was safer outside than in. My body wasn’t doing what it was supposed to do anymore and although she was 7 weeks early, today was going to be my daughter’s birthday.
Doctors warned that she may not cry due to premature lungs.
Anesthesia came in. Two epidurals were given. I could still lift my feet from the table. They started the emergency C-section. I cried out in pain. They put me to sleep and I awoke in the recovery room. My first words “Did she cry?” “She screamed.” My husband replied. I cried out, thank you Jesus!
They wheeled me into the NICU on my way upstairs to my room. There she was, my tiny 2 pound 12 ounce miracle. She was pink and breathing on her own. There were wires and tubes hooked up to her everywhere. I touched her leg with one finger and cried.
I was able to hold her the next day. They wheeled me into the NICU and placed her tiny body into my arms. Hot tears rolled down my puffy cheeks onto hers. She was perfect. She was healthy. She was mine.
But this isn’t how it was supposed to be. Not an emergency C-section where I wasn’t awake to meet her and then a 27 day NICU stay. I promised God that day that if she pulled through this unscathed that I would never take for granted a single thing. My first Mother’s day was spent in the NICU at St. John’s Mercy Hospital. I will forever cherish that first photograph I have, holding my beautiful baby. The baby that made me a mama. I Bloomed – take NOTHING for granted.
The story of my husband and I began seven years ago, two soon-to-be college graduates who met in a small town coffee house. And soon after the “I Do’s,” his job moved us hundreds of miles away from the closest family member—ironically after swearing off cold weather, we settled down in Minnesota.
And last weekend we said goodbye to our neighbors, our neighbors who became the family we can’t see—who saw us at our best, loved us at our worst, and who lovingly adored our children. Last weekend, I despised change. But I realize times like these give us opportunities—that through tears, hardships, and goodbyes—through any difficult time we endure, we can surrender and allow it to overtake us, or we can learn, grow, and become better people because of it. You can’t change the things that happen to you, but you can change how you respond.
When I look back on our story—to when we first met and the constant stream of events after the move—raising our rambunctious dog who chewed up our dining table, buying our first fixer-upper home, the birth of our two Christmas babies—I am always and forever grateful for the hardships we endure and the blessings we receive.
tonyandchristyspeck.blogspot.com
Hey Kelle, My story starts on June 10, 2006. They day i got married. I though that on my honeymoon I would get pregnant be a stay at home mom and mu life would be perfect! Well here I am almost 6 years later and we have never gotten pregnant. But because of all the trials of being infertile my heart has been opened in ways that I would never have thought. We adopted a preemie baby boy in 2010. This adoption would never of happened if someone didn’t pay for our entire adoption! It still blows me away that someone saw my heart to be a mom and knew that we couldn’t afford to and they took that burden off of us.
Also my husband and I are foster parents and we have 2 other little boys in our home that we are loving the opportunity to love on and be the best parents that we can be while they are in our custody.
This is the shortest way possible I could write my story, but the moral of my story is that you don’t have to be a biological mom to be a real mom. It took a while for that to ring true in my heart.
Thanks Kelle for sharing your story and inspiring all of us!
Jennifer @ jstar1031@yahoo.com
Our family, on a path to certain death, found ourselves on a parallel journey toward life.
Our four year old daughter died three months ago, her baby brother born just weeks before. She had a rare, fatal disease; he (and his brother) provide us with incurable optimism. But she did too. We learned how to live while we watched her die. Along with sorrow and pain, we’ve discovered humanity and generosity. For us, there’s been an incredible convergence of grief and joy, and most days we coexist in that tender place. We miss the idea of a daughter, and we mourn the dreams dashed. But despite the persistent echo of empty, we are achingly grateful for arms that feel full.
It was August 9, 2004. We had just gotten home from the hospital as our 2 yr old daughter has gotten tubes in her ears that morning. We walked in the house to find the answering machine blinking with a new message from the social worker that had placed our first three kids with us. She was calling to say they had a newborn boy they were trying to place and would we be interested? My partner and I talked about it briefly and decided no. Newborns are too much work! We just didn’t think we could do it. I called her back and before I could get a word in she gave me his info. Bi-racial, drug addicted and they were having trouble find him a home – no one wanted him. Of course that broke my heart, but we had decided we didn’t want a newborn. Then I asked her his name. To this day I don’t know why I asked. What did it matter when we weren’t taking him? His name was Jordan. I almost thought my heart would stop. Our other three kids are Jessy, Jayden and Janelle. The next thing I knew I was telling my partner we had to leave to go pick up our new son.
The drug-addicted, unwanted baby we brought home that day is now a thriving, beautiful 7 ½ yr old boy. Long gone are the memories of the first 10 months of pure hell. Sleepless nights, endless medical problems and days when I thought I couldn’t possibly do this. But we made it through. I am stronger than I ever thought I could be. He has taught us patience and about not sweating the small stuff. I am grateful that I asked his name.
Michelle Forsmo
Kuna, ID
After 16 years of infertility (and regretting ever purchasing anything related to birth control those first years of marriage when money was tight), we wandered down the path of fostering to adopt. In 2001 we adopted two biological boys who are 9 months and 12 days apart from each other. It felt like twins. Still does.
Many a night in those 16 years I remember praying “God, just give me one child, only one.” God answered my prayers double time. 6 years later we added a 5 day old baby to the mix. Thinking our family was complete, God worked on our hearts saying “See the blessings I have bestowed on you, there is one more of greater pain that needs you.” I had been reading and studying more on children of older years and abusive situations. These kiddos are considered the less desired pre teen/teens of the foster system that most people don’t want – babies are the thing, these kids have issues and unknowns people just don’t want to risk. So we jumped in again, taking on a 10 year old girl with a background sad and full of pain. It has and still is a ride….some days I cry back to God, what did we do? But then He answers me by the people around us supporting us and a look at the progress made and future there for one girl that will someday be a mother and grown up in our society too.
It is like an old chair, some people just throw them away when they wobble, but others try to fix it and give it life. We chose to give our chair life finding beauty in its unexpected state. It may always wobble, but we are holding it together and not giving up on it.
Mother’s Day 2010 – two years ago today – changed my life forever. What I had thought would be a leisurely day beginning with breakfast in bed and followed by snuggling and playing with my 5-year-old son and celebrating my ever-growing pregnant belly instead began in the hospital emergency room hearing the on-call doctor tell me my baby – the one we’d tried to conceive for five years and the one whose heartbeat I’d heard only 12 hours earlier – had left us behind and was instead born to Heaven that morning at the beginning of the second trimester.
My heart shattered into a million pieces. I thought recovery was impossible. And my heart broke a million times more for my son, who had been so excited to become a big brother.
When I got pregnant I had embraced the pure and unexpected elation of the impossible coming true, and in addition to the sadness of the loss I was equally sad to leave behind the happiness I’d begun to find. It took several weeks, but gradually it dawned on me that I didn’t have to bid farewell to the beautiful joy that baby had brought into our lives. Our little girl (who we named Mara) wouldn’t be joining us in body, but we could savor her in spirit by delighting in that joy no matter the circumstances.
It hasn’t been a recovery so much as it has been a complete (and ongoing) reconstruction in how I look at life and how I model it for my son – and my daughter, since we were lucky enough to add a little girl to our family this January. I’m blessed with so many gifts in my life, and I’m thankful for the baby girl who awakened me to them.
Thanks for letting us share! I can’t wait to come back and read all the other beautiful stories
Kelle, I have shared our story with you before, when I donated to Nella’s ONEder fund, but I’d like to share it here because it most certainly fits this theme.
My first pregnancy was full of ups and downs, as we learned the child I was carrying had both DS and multiple heart defects. We were prepared for surgeries and hospitalizations, but not for the way things ultimately went. The morning after Ben’s birth we got the worst possible news: not one, not two but three heart defects. Down Syndrome. No recorded cases of this combination of defects. Small chance of making it through surgery. Transplant chances slim to none. Hospice. Funerals.
We took Ben home one week after his birth. We prepared for his death and accepted hospice care. Our families surrounded my husband and I, and Ben.
But Ben had other plans.
He heard “two weeks, if you’re lucky” and pretty much threw up the bird.
He was enrolled in early on at nine months of age.
He was discharged….DISCHARGED from hospice care on his first birthday.
Ben lived. Ben LIVED really, really big.
We learned that you cannot prepare for death. You can only live your life and do so by loving and holding tight to the ones you love. You cannot tell death when to come, as you cannot tell love where to grow…both are unexpected and both can bring joy…yes, joy…when you meet them.
Ben finally succumbed to his one-and-only heart on Valentine’s day, 2008. His baby brother was two months old. Ben was one week shy of his second birthday. Though I miss him every day I know I learned more from that tiny boy in two years than I will learn in a lifetime. I am so very grateful that things took the turn they did, that things went so wrong, and turned out so right. I’m so very grateful for my boy and the chance to be his mama.
-Kym (Coffeemamma)
I’ve been reading your blog since Nella’s Birth Story. I feel a special connection to you through your blog. We both gave birth to unexpected babies in January 2010. Yours is your beautiful, happy, blue-eyed Nella…mine is Patrick.
And he’s got story that is hard to tell in just 300 words, but I will tell you as best I can…he was born with a 1 in a million diagnosis – an extremely rare vascular tumor in his neck and chest. He was placed on a ventilator before the umbilical cord was even cut. You can read more about him on my blog… He is a medical miracle. No one expected him to live. And I am proud to say that 2+ years later, he thrives! He is nothing short of amazing.
Here is an excerpt from my blog, posted last May 5 (2011) a year after he came home from the hospital:
“Tomorrow, May 5, will mark a year since Jeff and I brought Patrick home from the hospital, after 120 days. It seemed surreal that we had arrived there early one cold, cloudy January morning, and left on a warm Spring afternoon. Those days from January to May were the most trying, the most challenging, the most hopeless, and eventually the most hope-filled days of our lives.
For me, there is nothing more rewarding, more challenging, more gratifying and humbling, more heartwarming and, sometimes, heartbreaking than being a mother. So, to watch my own child, my newborn baby, lay still, so heavily sedated and totally dependent on machines, medication, and transfusions for such a long time was the most gut wrenching experience of my life.
I felt totally helpless. There was nothing I could do, except keep Patrick company and pray…. (I also busied myself with learning all my newly acquired medical jargon, finding the best spot for cell service in the hospital, and plotting the quickest route from the garage to Newborn Special Care Unit.)
But most of the time, they were brutal days for me, for us. And especially for Patrick. I signed more consent forms for procedures than I care to remember. We met with specialist after specialist, I spoke with Drs in other states, I saw every nook and cranny it seems of Yale-New-Haven Hospital – MRI, Radiation, Interventional Radiology, Operating Rooms… and waiting rooms aplenty.
He is a joy-filled baby, and he spreads his joy every where he goes.
He is our miracle for sure.
We are forever grateful.”
My blog (updated not nearly as often as it should be!) http://dreamswishesansweredprayers.blogspot.com/2010/07/120-days.html
thank you for sharing your beautiful story and for the very necessary reminder that we are all connected. I can feel the strength of these hundreds of comments. It is amazing.
My daughter was born on November 18th, 2005 at 4pm and we said goodbye to her 90 minutes later. The perfect home birth that I had anticipated went from bad to worse in a matter of a few hours. My first pregnancy and birth went so well that we followed the same path and didn’t choose to do ultrasounds or many blood tests. As I was in labor and we realized that the little one wanted to come out feet first, we decided it was necessary to get to the hospital. Once there I was whisked away to the OR and my husband was led in the other direction. I will never understand why they wouldn’t let him in even as I kept asking.
Everyone was upbeat and things were going well until they pulled my little one out of my body. The silence in that room was palpable. The answer of “they’re working on her” to my pleas and cries did nothing to console me. Then the pediatrician appears at my side to say “didn’t you have any ultrasounds? didn’t you know? Your baby has anencephaly. Her brain never developed and although her heart is beating she will never take a breath and will be gone in a matter of hours. Are you alone here?” Even writing this 6 years later, I can feel my insides begin that shake of fear, grief and shock.
My husband held our tiny one while her heart finished beating and together we told her all of the hopes and dreams we had held. I then asked to be alone with her and tried to memorize every little feature. Her perfect hands, and teeny ears, that soft place on her neck that I would forever long to tickle with kisses. I sang her our song, thanked her for choosing me and as i kissed her over and over and over, I said goodbye.
The places that my grief took me to in the days that followed were places I did not even know existed. It was life shattering. My heart was blown apart, but surprisingly, slowly, I began to heal. I became so thankful that we knew nothing during the pregnancy other than to fall in love and enjoy every kick and roll. We spent 9 months happy and singing and feeling her rolling around and hiccuping. Bliss.
People ask how i got over the experience and my answer is that I didn’t get over it, but through it. I began a healing process that I believe will last a lifetime. My goal is to share my story with other women, men, families so that we can help each other to heal and help each other to move forward. I have so much gratitude for this life and for the experience of my daughter Kiraly. My heart is so much bigger, my compassion runs twice as deep and I search for joy in life in a way that I don’t know I would have understood had it not been for Kiraly. I pray that all of us who end up on this path can hold each other in this invisible web and lead the next woman through the grief to the other side–where you can find ways to see the beauty and open your heart to find joy.
Thank you -Erin Maxwell
Perfection is something I’ve always wanted to achieve. I went to great lengths in high school to fit in, and yet, I wasn’t happy. Instead, I was consumed with fear, sadness, and extreme anxiety. Growing up in West Michigan, I had a family who loved me fiercely, loyal friends, and a great high school; there were no obvious reasons for the source of my sadness and anxiety. With the help of my mom, I sought out professional counseling and was diagnosed with both depression and OCD—and found out that both are quite common on one side of my family. The funny thing is that no one ever talked about it. We all had this idea that perfection meant having everything together and to sacrifice that image was not something any of us were willing to do. I accepted this for a few years, and growing frustrated, began to talk about my feelings with my family. What we experienced together was growth and joy. We helped each other through our challenges, learned to talk about our feelings and learned together that it’s really hard, but it’s so much better than trying to present our lives to others as beautiful when really, they are quite broken. However, in the brokenness, there is still so much beauty and it’s real beauty. The kind of beauty that is so much more than a skin-deep façade of perfection. And there is joy! There is so much joy. I believe in a God of joy, a God who does not want us to struggle alone in darkness, and a God who wants each of us to choose joy, not perfection. It isn’t easy, but it’s so worth it!
Has my life gone in a different direction than I ever thought? Holy moly, YES.
Eighteen years ago, we were given a gift wrapped just a little differently, and given an extra chromosome. She has completely changed our lives and affected the lives of so many others around us.
Through our Brenna, we have begun parent support groups, met others in various support groups, started a “King’s Kids” program at our church that enables parents of disabled kids to attend service while someone is loving on their child in a Sunday School program. Once a month, the parents go out while their kids are at a member’s home, having a blast, being a kid.
We have geared up twice and my husband and seven others took their bicycles and competed in the Race Across America. From Oceanside, Calif. to Annapolis, Maryland. That’s over 3,000 miles each time. Why? Because we, and other families were tired of not being able to put our kids into a private school where there siblings and friends attended. So, we put together a proposal, the guys hopped on the bikes and we raised enough money to begin a Special Ed. program at the kindergarten-junior high level. That program now has a waiting list. Last summer, the guys raised enough money to begin the program at the High School level. The class size will double next year!
Has it been easy? Good grief, no. Have we doubted? Yep. Argued? Yep. Cried? Buckets and buckets. Still do.
Would I want it any other way? I grieve from time to time of what might not be, but when I loose myself in those gorgeous blue eyes, I know my life is complete.
xo
lynn
Two and a half years ago i was blessed with the most beautiful baby boy. He was perfect in every way. The pregnancy however was not perfect. At 6 weeks pregnant i was incredibly sick, not normal morning sickness, and after 2 hospital stays and 30ish pounds gone i had a picc line placed for hydration and vitamins. Within a few short months i became septic from an infection in my picc line, which resulted in another hospital stay and a new line being placed. Finally after 5 terrible months the sickness lightened a little bit. I then developed gestational diabetes, with 2 insulin injections a day and sugar levels really high my son was born 2 weeks early with a short visit to the nicu. Two and a half years later he is the most amazing person i know, bright… funny… beautiful.
Ok, here’s my story of how Down syndrome helped me fight cancer. It’s not what you think:
I am a father of 6. Our youngest son, who has Down syndrome, was born in July 2008. Related to that, he had great difficulty nursing, and my wife and he were pretty steadfast in working it out, and after months of trying they were successful. In the meantime, my wife had built up quite the stock of frozen breastmilk because he hadn’t been nursing well enough.
In early 2009, I was diagnosed with Stage III colorectal cancer. I had to undergo radiation, surgery and 6 months of chemotherapy. Cancer, of course, can kill you, and chemo can drastically compromise your immunity system. Breastmilk, however, is the milk of life, and has amazing immunization properties and nutrients.
My wife had to stand idly by as I went through treatments. There really was nothing she could do for me. But it turned out there was: we realized we had a whole freezer of breastmilk, since in the beginning our son was not nursing well.
I began drinking protein shakes with breastmilk. I had routine bloodwork in between chemo treatments. My numbers were suprisingly high. For a while I skipped the breastmilk. My numbers dipped. I fell off the wagon and began drinking shakes with breastmilk. My numbers went back up. I truly believe that it helped me get through treatments.
But it did something unexpected. Instead of being a helpless bystander, the fact that our son couldn’t nurse well at first allowed my wife to give to me, and literally help heal me. I will never be able to repay her for that.
When I was 10 years old I was diagnosed with a panic disorder. At the age of 16 I was diagnosed with season depression. Last December, I began to self harm. I am currently five months without self harm, and through this nearly decade-long battle I’ve learned that despite my crippling fears and extreme setbacks, I am much stronger and braver than I ever thought I could be. At only 19 years old, I am now about to enter my third semester of college and my story is still continuously being written with each passing day. But over the course of almost 10 years I have evolved from the scared little girl crying the corner to a young woman moving to achieve her dreams, one step at a time. It’s something I’ll have to deal with every day for the rest of my life, but I know now that I have the power to not only live with it, but to succeed in spite of it.
Our life took an unexpected turn when we recently learned that our 4th child has Edwards Syndrome (Trisomy 18). Although 85% of people who are given this diagnosis choose to terminate, since it is considered incompatible with life, we choose to let our daughter grow.
We have been so blessed, she is strong. She has a serious heart defect, but she wiggles and moves and continues to grow.
We’ve learned so much about what a life means. That the impact of a life is not determined by the length of the life. Abigail has not taken a breath yet and she has already impacted our life as well as so many others. She has given us an opportunity to embrace both the pain as well as the joy in life. She is teaching me to take life one day at a time and focus on my gratitude. I’ve learned that when I focus on the blessings in my life, the unpleasant parts do not go away but they become much less important.
Although her life will not be what we anticipated when we got pregnant, it will still be significant. We are so blessed.
This experience has encouraged my husband and me to advocate for counseling for families in a similar situation. Whether you make the choice to terminate the pregnancy or continue it there will be pain and confusion. Counseling families to help them heal is so important.
Our blog for this part of our life is: http://www.ourjourneywitht18.blogspot.com
PS. At first our doctor thought she had T21. I have followed your blog since Nella was born so I KNEW that we would find so many blessings in the unexpected… We’re sad that we won’t have longer with Abigail, but we are thankful to still find the blessings in life.
Life rarely turns out how we envision it and sometimes it turns out even better. I knew when I first started dating my husband that he wanted a military career, but I didn’t quite comprehend the struggles that we would not only make as a couple, but the ones we would ask our children to make too. Those struggles have been moving 3 times in the past 3 years, always asking our children to adapt to new places, experiences and friends, and coping with daddy being gone for long periods of time. And our most recent struggle was my husband deploying overseas, just 10 days after I gave birth to our third daughter, Finley. While I knew in my heart that everything would be okay, there were a lot of tears, comforting phone calls, and family willing to come and help. Being at home with three girls under 5 has forced me to spend less time worrying about how neat my house is and more time concerned about the needs of my girls. When they are lashing out, sometimes the last thing I want to give them is exactly what they need- a comforting snuggle on the couch, an extra book at bedtime, a special trip to the store to get ice cream. These are tiny people with big emotions and I cannot ask them to contain their own emotions when I am struggling with my own. I think through all of this, we have become a closer family. We cherish the time when we are all together, we miss each other dearly when we are apart, and we strive for normalcy in the middle of constant chaos. At the end of the day, I am so proud of our family for sticking together in the most difficult of circumstances.
I’m still waiting for my unexpected situation to bloom. Almost 4 years ago, I gave birth to a healthy baby boy, albeit a few weeks early. I had a perfect pregnancy until the 37th week when I was told I had HELLP and needed an emergency c-section. 18 months later, I was told I had to have surgery to remove a uterine fibroid tumor that would have caused us a lot of trouble when we tried to get pregnant again. We started trying for baby #2 6 months post-surgery, around our son’s 2nd birthday. As we creep closer to his 4th birthday in a few short weeks, what we have to look back on from the last 2 years are 2 miscarriages, 2 d&c’s, a hysteroscopy, 3 failed rounds of Clomid, and countless ultrasounds and visits to the lab for blood draws. We are getting ready for an IUI and I hope that this is where our unexpected situation blooms into a beautiful, healthy baby brother or sister for our little man.
After reading Bloom, it helped open my eyes even more about how my life has helped me bloom. I wanted nothing more then to be a mother, I pretended when I was little, I was an honorary mother to many, but never had the title I desperately craved. After my husband had Cancer in 2003, we were told that it was likely we would never have children on our own. We continued to hope, to try, to pray, and to cry. In 2011, we decided to adopt, and in October of 2011, we brought home Zackary (3) Garrett (2) and Kaymin (1). I have truly had the opportunity to learn, grow, stumble and flourish, and am thrilled after so many years to get to celebrate my first true Mother’s Day!
Two and half years ago when my husband and I found out we were having our second baby we were absolutely elated! We were giving our daughter a sibling, a sister. My pregnancy wasn’t any different than the first, except for the fact I went into labor on my own the second time around and my husband drove me to the hospital like a maniac, as we were timing the contractions 2-3 minutes apart. You should have seen the look of panic on his face. Priceless! Reese was born at 3:01 am and I was one proud momma. It never occurred to me that something was different when I looked at her, but my husband said he knew from the beginning. I remember hearing the doctor ask the nurse “does she know?” in a faint whisper. Again, I didn’t think anything of it. I remember holding her when the doctor came in to tell us, that he was sure Reese had Down syndrome. I cried what seemed like hours, I couldn’t sleep, I was a complete mess. I remember our mothers and grandparents visiting, it felt nothing like when I had my first born. It was sad. By late morning they had whisked Reese away because she was having trouble breathing and were soon transferring her to another hospital. My life had been turned UPSIDE down. My emotions were all over the place scared because I didn’t know what was going on medically and not what her having Down syndrome meant of course thinking the worst. 2 ½ years later after four open heart surgeries she is doing fabulous. We are so proud of her. Reese brings so much joy and happiness to everyone she meets. She has opened our eyes to a new and better world, teaching us so much along the way! I never knew how strong I was until the day she was born and everything that came after. GOD has truly blessed our family.
P.S. Kelle…thank you so much for letting us share our stories as you have shared so much with us. I remember finding your blog when you had Nella, five months after Reese was born and as she was going through her very first heart surgery. Your blog helped me get through the next couple of months:)
Kasey Baldwin
Oh, how I want to bloom.
Some days it is hard to lift my head from the pillow.
Some days I lay there, listening to the stillness of the morning quiet…before the alarm clock rings, before the chaos starts. True peace.
You see, my husband is in prison. Here I am, 26 years old. Mama of two precious little girls. Trying to figure this out on my own. Sometimes barely keeping my head above water.
But other days, soaring. Always trying. Always smiling. Sometimes, smiling too much – to cover up my insecurities, my heartbreak. The loss of my spouse and partner, if only for a few years.
But there is such beauty in my life. The handmade buisness I started to pay the bills? It’s flourishing. Watching this business grow, this small thing I started with my own two hands, has brought me such courage and strength. Independence, in it’s truest and most brave form.
Life is not perfect. Who says life has to be perfect? It can still be beautiful.
We will begin again.
http://www.ellaryeboutique.blogspot.com
After being done with having children, my husband had a vasectomy back in 2009. My son was 8 and my daughter was almost 6. No one was ever more done with having babies than I was. lol But on January 2nd, 2010, I found out I was pregnant. And the Dr. confirmed after that that the vasectomy was not successful. I felt the world drop out from under me. That’s why I could relate so much to your story about sweet Nella. It wasn’t what I wanted and it sure wasn’t what I expected. My life was changed in an instant and it has never been the same. But now I have a beautiful, healthy baby girl who will be 2 in August. I am so blessed. I can’t describe in this box how my life has changed or how difficult it has been, but as I watch my sweet girl bloom into toddlerhood, I am blooming right along with her.
I was one of the lucky ones who didn’t have to wait too long for that positive sign on the test strip. The months went wonderfully as my body grew with a new little. My husband and I enjoyed and anticipated every moment. Yet, we didn’t see this coming.
What I thought my vocabulary would be:
birth weight, size, breastfeeding, holding, changing, sleeping, loving and family.
In reality my vocabulary consisted of:
severed, stretched, neuropathy, foot-drop, nerve damage, seizure, bulges, narcotics, fittings, spasms, EMG, CAT scan and MRI’S.
Thoughts: How will I care for a newborn when I cannot care for myself? How will I manuever throughout a house where stairs lead everywhere? Will I ever walk again? Why is there so much pain? Is this my new life? Why?
I didn’t want to hear medical vocabulary or think thoughts about how and why. Instead I just wanted to focus on my new little family. Our son had just been born and yet this is also where my pain began. We didn’t realize that my body would react so strongly to the birth of our son.
But it did. For the past 5 years I have fought my body to be the mother and wife that I want to be and to make our little family work. Unfortunately, the medical terms expanded but it didn’t stop our love from growing as well. 🙂 It hasn’t been an easy journey but together we have endured it and defined what it is to us.
Cheryl Yeary
buddercollie at gmail.com
I found and fell in love with your blog– your journey a little over a year ago. I feel like each of your posts is a mini present just for me. Prior to reading yesterday’s blog I was actually going to email you to ask you to write on the following topic, woman’s labor stories, especially ones that did not go the way they had planned. So when I saw the opportunity to write about an experience that did not go the way I expected I felt that it was a sign. I just gave birth to our first child, a baby boy about three weeks ago. Almost the entire pregnancy was smooth sailing as they say. We had a few worries here and there, but nothing that we were not able to get through. On 4/18 I went to my last Dr. appt. I was 41 weeks at the time and we planned for an induction two days later. I ended up not needing the induction because I went into labor naturally on my own that very same night. My husband and I stayed at home as long as we could and went to the hospital the following afternoon. I continued to labor naturally with an epidural and it was the following morning that I had reached 9 cm. The Dr. offered a little Pitocin to reach the full 10 cm, since I had been in labor for over 30 hours. At this point one of the nurses checked my catheter and noticed hardly any urine in it and saw blood. She immediately got the Dr. who quickly realized that the baby’s head was beating against my bladder and was stuck there. It was quickly decided that a C-section would be my best option. The Dr. was very worried about permanent damage to my bladder, which I understood. I was petrified though to have this surgery. I had expressed this fear at almost every Dr. appt. As they wheeled me off into the surgical room everything happened so fast. There was a vast disconnect between my emotions and what was actually happening. The next thing I remember is my husband sitting down next to me and me seeing our son whisked across the surgical room. My husband looked into my eyes and announced it was a boy with tears falling down his cheeks, we had not known the gender until that very moment. We named him Owen Timothy. Timothy after my husband’s father who has been ill for quite sometime. The part of my journey that I was not prepared for was how I would feel emotionally after the experience. I felt an emptiness deep inside my soul with how I brought our son into the world. My husband did not get to cut the cord. I did not get to have him placed on my stomach immediately after birth. I was struck with the grief of a birth that I did not get to have. I thought to myself, my mom and my sister gave birth naturally.. What about me? As each day has progressed I have found a piece of strength and courage to move forward. I love our son so much and still cannot believe he is here amidst all of my inner emotional confusion. I wanted to write about this topic because I feel a lot of women can relate who have had an unexpected C-section or a traumatic birth. I have to add that I lost quite a bit of blood during the surgery and had to have a transfusion the following day. Healing from a major surgery while trying to take care of a newborn is a journey in itself. It is amazing the strength that a Mom can find to carry on. I finally understand what that strength is now that I am a Mom.
Having heard your story on NPR yesterday, I had to find out more about your book and blog and saw the invitation to comment. This Mothers Day as I remember my wife and mother of my children, I will always think of her positive outlook for the future of our Annie.
Having had daughters in 1980, 82, 86, Sandra wanted another. It was 1991 and that meant there would be a six year split between children. Not wanting a caboose, we planned on two more births. May 1992 daughter#4. November of 1993 told us by ultrasound there was child A and B. Our first son and daughter#5. March 1994 at full term, Sandra delivered boy, girl. Sandra knew at first sight that Angela(Annie)Celeste had Down syndrome. The docs were in denial but she knew.
Three days later we found Angela had a serious heart defect, Tetralogy of Fallot. An angioplasty was preformed, and one year later she had open heart surgery. Our pediatric heart doctor told us he saw many children with Down syndrome and that “Tet” children tended to always be higher functioning.
Fall of 2004, my wife had surgery for breast cancer and four weeks later, my only son was diagnosed with ALL (leukemia). Spring of 2005, after a bone marrow transplant, he went into remission along with my wife. August of 2006 he relapsed and five days later my wife was found with malignant tumors in her lungs, brain and spine. Daniel, 12 passed in two weeks and Sandra, 49 in nine months leaving me with five daughters, three unmarried.
High functioning Annie, with four sisters to guide her, is graduating high school this month, age appropriate, was Homecoming Queen in the fall by a landslide, just went to Prom and is full of life. She gets straight A’s in school with only one resource class and excels in American Sign Language. She plans for community college in the fall.
“The Road not Taken” by Robert Frost was my sons favorite poem and would best sum up my feelings for my four daughters who all share a “sister”.
Kelle, your story spoke to me in so many ways. I can’t begin to tell you the inspiration I take from you each day.
I have to admit, I don’t think I’m blooming yet. My story has to start with my mom. She knew what it was to be real. To be worn down but to be loved completely and to know what life is about. Her friend, who was her hospital chaplain, read a passage from the Velveteen Rabbit at her memorial service, after battling breast cancer for 12 years. When she found out she had cancer, my twin sister and I were 6 and my older sister was 8. For a long time, I didn’t know that cancer could kill my mom. Honestly, I don’t think I truly knew that until she was gone. I wished someone had told me. I felt so lost and cheated. She told my grandmother that her only regret was not being able to hold her grandchildren. Out of 3 girls, I’m the only one with children. My son is 4 and my daughter is almost 1. When my son was close to 18 months, I told myself that there was no way he had autism. My mom was gone and how could this be allowed? It seemed so unfair that he would have to struggle, that my husband and I would have to struggle. I spent a lot of time feeling sorry for myself. I may not be ready to soak up the sun, but my bud is swelling with good intentions. Some days my heart aches, but I like waking up to each new day trying to change, to see things differently, and to do the best I can to realize that we don’t face challenges as punishment. My mom used to have a small paper note on her mirror which now has its home with me. On it was written a reminder that the Chinese symbol for crisis is the same as the symbol for opportunity.
My life was forever changed on February 20, 2009 when our second child, Dylan, entered our hearts.
When I was pregnant if I had been told that I would have a 1 in 100,000 chance of having a child with Wolf-Hirschhorn Syndrome I would have brushed it off and thought that it could never happen, but it did. I had a healthy second pregnancy, all my tests had come back as normal and besides him looking a little small on ultrasound we were reassured by the specialists that everything was “perfect” with our baby boy. I had a normal, uncomplicated delivery and when the doctor told me to reach down and grab our baby I saw his face and I knew. I knew it was something. His eyes looked kind of far apart and his nose looked different. He was whisked away to the NICU because he was having a hard time breathing and it was there that we were told that our beautiful baby boy had “dysmorphic facial features” and “multiple anomalies.” One week later we got the diagnosis of Wolf-Hirschhorn Syndrome. I thought that I would never be happy again. This was the most horrible syndrome that I had ever read about and I was more scared than I have ever been in my whole life. I have never cried so hard.
Dylan is now three years old and is my little ray of sunshine. When he smiles and his beautiful blue eyes shine he can light up a room. When his sister hugs him so tight and kisses him so hard that I am afraid he is going to cry or choke, but instead he just gives her a big smile and giggle, it warms my heart. He has endured more in his three years than most people will have to in a life time but I always find him in his crib smiling and happy in the morning. He is so amazing. He has made my life so amazing. I am blessed to be his mama.
Thank you for letting me share my story.
Kristy Fisher
http://www.ourlittledillpickle.blogspot.com
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My story starts when I molested by my uncle at 8 years old. At the time I didn’t know what to do so I said nothing. When I was 24 my uncle and his family came to live with us , it brought everything back up again. I was scared and didn’t know what to do. I decided to tell my parents thinking they have always been supportive why not now, instead they said no he wouldn’t do that and why did you wait so long to tell us. Later my mom said well something like this happened to me and my mom told me to just let it go, move on. I just remember feeling devastated; my own parents were on his side ,they secretly continued the relationship with him – lying to me about what they were doing. They showered his kids with gifts and acted like I was crazy to think they would have let this happen to me or that my uncle would do something so horrible. Every time they talked about him or I found out they had gone over to see them I would feel sick to my stomach, and I would cry feeling like I just didn’t matter. It was around this time that I meet my husband who listened to me and supported me as I dealt with all of this, he has had his own struggles having CP but he never complains. We have now been married 7 year and have two great kids, a daughter who is 4 and a son who is 1. Through all of this I have learned from my husband to embrace the challenges we are given, learn from them and to do better for my kids. I make sure that I listen to them and what they are feelings since it is so important, I want them to know they can come to me with anything and I will support them. These challenges or unexpected situations have made me who I am and I think they are helping me to stand up and to be stronger.
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During my senior year of college, I endured something that no one should have to endure. That something when you close your eyes and beg for it to be over. And when it finally is, you hope you’ll wake up and it will all just be a horrible nightmare. But it isn’t, and your life is forever changed.
A few weeks later, when something didn’t show up, I got concerned. Then that little plus sign presented itself, and I thought I was going to explode. I didn’t want to believe that there was a baby growing in me, especially considering how this baby came to be. I knew that I couldn’t voluntarily end the pregnancy, but I also knew that I couldn’t have a child right now. So, I set to work with an adoption agency, preparing to find a family whose baby I was carrying.
A few weeks after that, something didn’t feel right. Because no one knew what had happened, and no one knew that I was pregnant, I took myself to the hospital. As I watched that ultrasound screen, I watched for the flicker…there wasn’t one. My baby was gone.
I allowed myself to be sad and mourn. Though I knew I wasn’t destined to be this baby’s mommy, for nine weeks, I was. And after being told I would struggle to get pregnant, this baby showed me that my dream of being a mama wasn’t out of reach.
Every year on July 27, the day I was supposed to bring my baby into the world, I make cupcakes and sing happy birthday to my little Ezrah, for this little baby showed me that even in the darkest moments of our lives, a beautiful light will always make it’s way into the most unexpected of places.
My baby girl was just 6 days old when she had her first open heart surgery. I was still very much in recovery mode from an unplanned c-section, and stood hunched over her bed in pain as I kissed her tiny head before they wheeled her into the operating room.
It had been only hours earlier that we heard the news that a chromosome deletion was the cause of our baby’s heart defect, and would be the cause of future issues for our sweet girl.
As my husband and I sat in the surgical waiting room, I shed silent tears at the loss of what I had hoped would be for my daughter.
Three months and two additional open heart surgeries later, we brought our baby girl home to stay.
I gave away her 0-3 month clothing, most of which was never worn.
Feeding tubes have replaced the bottles I lovingly washed before my sweet girl’s birth.
A row of medicine bottles line our kitchen counter, and an oxygen saturation monitor sits in the corner of our bedroom.
The last 9 months have been filled with tears and heaven sent pleas for help and guidance, but they’ve also been filled with more love than I ever thought possible.
My sweet girl will have a mountain to climb her whole life, and because of that, her daddy and I have purchased ourselves the sturdiest hiking boots we can find.
-Noelle (blogging at Because Nice Matters) http://www.noelleplatt.blogspot.com
Every single person has experienced brokenness. It’s part of your story and my story. The pain of it ebbs and flows. The issue is how we choose to deal with it.
My word of the year (and quite possible of the decade at the rate we are going) is “bittersweet.” Without knowing the bitter, it’s impossible to fully enjoy the sweet. And tasting the lingering sweetness enables us to have hope during the darkest bitter moments. It’s such a precious word to me that it hangs around my neck from Lisa Leonard Designs (friends, visit her website if you have time…).
I’m not going to bore anyone with the details of my sorrow, nor am I going to nauseate you with my joys.
My faith and my community have carried us through both and I live in gratitude every moment. Ok, well, truthfully, maybe not every moment. But I sure as heck try!
In August of 2011, my husband and I welcomed our first baby, a beautiful little girl named Tessa. Shortly after her birth, things started to go downhill. Tessa grew sicker by the hour and nearly every system in her body was showing signs of failure. After emergency surgery, we were warned that Tessa would need months in the NICU for recovery. This was so far from how I pictured the birth of my daughter. I wanted to hold her, nurse her, take her home with me, and love her the way any new mom should be able to do. The nightmare only grew worse as infection set in. Doctors scrambled to find new solutions, but we were forced to have the conversation with Tessa’s doctors that no parent ever wants to have. Tessa’s body was struggling to stay alive and there wasn’t much more they could do. We had to let our baby go. I held her as the breathing machine was disconnected and her heart stopped beating. She was with us for just three days. As Mother’s Day approaches, the day will be filled with sadness as I mourn the loss of our baby, but I will also celebrate the fact that I AM a mom. If I’m being honest, this is an identity I have struggled with. I have a daughter, but I don’t wake up in the early hours to change diapers or nurse her. I don’t get to see her face every day. I don’t get to watch her grow up and keep track of the milestones she’s reaching. I don’t get to do the normal “mom” things . . . but I have known the deep love a mom possesses for her child and I will love her and be her mommy forever.
-Georgia
http://4thgradesomething.blogspot.com/
Thank you for posting Sandy’s story. My 29 month old has Alopecia. Sandy’s story gives me hope that there is some positivity to look forward to. All the positive comments on her page made me tear up. I can only hope that my daughter will be accepted as she really is….with or without hair. Thanks for posting!
My story…is one I am still living each day. I am currently 13 years into a marriage with the absolute love of my life. Not sure how I got so lucky!! 5 years ago and 3 daughters into our wonderful life, I was diagnosed with stage 3 thyroid cancer. By the miracle of GOD and my own sheer stuborness I am successfully living with cancer. Not cancer free, but living. A year ago my husband and I decided to take a leap of faith and go for baby #4…one we knew we wanted. Very easily got pregnant and all was well till my 20 week ultrasound when a marker for down syndrome showed up and my world felt like it shook! I was given 1 in 250 odds and honestly thought…what have I done?? I was so greedy to try for one more and now look at what I have done. I waited it out for a long 20 more weeks and in November we were blessed with a healthy son…typical chromosomes. Along my path of waiting I have gained a very, very soft heart for babies with down syndrome. Since having my son I have actually thought…why not me…why was I not so lucky to have one of these special babies. My perspective has been changed on people that I used to view as “different” and I am about to go see my oncologist next week and start the next phase of finding out what I have done to my body in order to have another baby. I know my cancer has grown…I’m terrified to go. It’s a secret I have been keeping from everyone. I feel the new bump in my neck everyday. But looking at my son…he is here for a reason. He has opened my eyes to so much more.
I,like many others have been reading your blog for some time. However, have yet to post. I became a mother in two very different ways. The first time at 22, young and single, I gave birth to my now 14 year old son, 3 weeks early. Not something I had ever imagined happening to me. I never wanted him to be a statistic so I think in many ways I went over board to make sure he was always clean, respectful and a “good” boy. I took the ability to become a mom for granted. When I was 30 I met an amazing man who loved me but my son as well. We knew we wanted more children, however, we didn’t know how difficult it would be. After a lot of doctor visits, letdowns and tears we decided to adopt. What an experience that was, but the outcome, amazing. January of 2010 a young woman chose me to be her son’s mom. Now 2 1/2 years later I can’t imagine becoming a mother any other way. Even though his birthmom has chosen not to have contact, I send pictures and let her know how he is doing every few months. I have learned that every child no matter how and when they come into your life is an amazing gift. It’s what we choose to do with it that makes us who we are. Thank you for sharing your story, and your beautiful girls and family with so many.
My story starts about the same time yours does. Although I did know my sweet Grace the 6th and final baby would have a magical extra chromosome I did not know I would have a daughter. When the Dr announced that I now had a Daughter I knew at that moment I was going to ROCK this! I had to ROCK this, there was no other option. As I began the preparations for my daughters baptism I pulled out all the stops. She would be our last child, we reached a nice round number of 6 and we were finished. Dresses were ordered, menus planned and then came an email. It was your birth story, the story of Nella’s arrival. It came from our local Down Syndrome group, someone I don’t even know but I am forever grateful. From that moment on I had a friend, someone who was traveling the same road at virtually the same time. I know it sounds corny but truly I hung on to your words, our moons were aligned. Knowing that my feelings were the same and my heart was healing just as yours gave me strength and made it easy to stay on track, not miss a moment. I started enjoying the small things, things I never would have noticed without Grace because without Grace I would have never found you and your inspiration! So heres to you and your beautiful family, I feel like I know you. Thank you for pulling me up with you even though you did not even know I was there. I am a better mother, advocate and friend because of you! I love life more then I ever have in my 38 years, the air is sweeter and the grass is greener then ever! Thank you! XOXOXO Katie Driscoll (5boysand1girlmake6.com)
So my life hasn’t gone the way I expected it to. I thought I might get married, have a couple of kids, live a boring little life and retire in a house by a lake. I started out on that path, got married to a great guy, had an awesome baby boy a few years later, and settled down to live a boring little life. Then Chloe came. She popped into our world surprising us with that extra chromosome and our lives were never the same. Of course I had some fears about her having Down Syndrome, but we loved her and we were ready and even excited for the challenges. Then in 2006 Chloe was diagnosed with Leukemia. The one thing that just nagged at the back of my mind ever since I found out that she was at a higher risk because of having Down Syndrome. I had pushed it far back into my mind and almost forgot about it. Her type of Leukemia (ALL) requires a very long treatment protocol, and we spent many hours in the car going to Children’s in Detroit, and many days in patient with bacterial infections, chemo treatments and a very scary fungal infection. Still through it all, it made us stronger. Cancer sucks, no doubt about it, but it also changed us in many positive ways. The biggest thing it did for us, was to teach us not to take life for granted. I no longer think very long before I say “YES” to something. I want to live big. I know now that life can be short, that there is nothing certain in this life, and I want to make sure our family enjoys every single moment we have together.
Caringbridge.org/visit/chloemalena
I am a 21-year-old student at James Madison University in Harrisonburg, VA. When I was growing up, I always felt like something was wrong with my body and never knew what it was. Once I came to college, I found out that I have a chronic pain and fatigue condition called Fibromyalgia. At first I felt like my life had been taken from me because I was no longer able to do the things that gave me joy in life. My life was restricted and I was constantly taking medications and leaving college to go home to the doctors. Thankfully, through prayers, friends, a supportive family, and inspirational people like yourself, I have been able to accept this as part of my life; not my entire life. I have learned who I am and continue to learn through this disorder. I am still in pain all the time but try not to dwell on it and still live a normal life as a college student. I just found out I made dean’s list and this summer have big travel plans. I am thankful for people who care, and want to help those who are less fortunate. Life is a gift and if we make the best of it and give away all that we receive, we can’t go wrong. Through the pain, I have learned not only who I am but also to be a better person, friend, and really feel for other people.
When I was on high school I was raped by one of my coaches. After over a year of giving statements and interviews with detectives, and having my life torn apart at the seams it was time for court. A week of testifying and hearing a “not guilty” verdict did more damage to me than I thought possible. I remember sitting in my car and crying so hard it was past the silent phase and into the screaming incomprehensible words phase. Years went by wondering “why me” when I realized that there were millions of other women out there going through the same thing as me, so I to take all of my negative energy and turn it into positive. I am a survivor and I was to help other survivors. It has taught me to trust myself more than anyone else and to believe in myself. I focused specifically on girls in Kenya and have been given the incredible chance to work closely with a school in Nairobi. Two years ago I was able to play a small part in helping to educate these beautiful souls by sending over 6,000 books and open a library in this school that seems like a little sliver of paradise in the middle of a filth and disease stricken slum. A place that has shown me more beauty than I ever thought possible. With people that have been worth more than ten times the heartache I endured to get here. I am so very thankful for them, and the life I have been given.
Women hold such power in stories, and in the ability to find joy in difficult journeys. My best friend introduced me to your blog when my husband and I were in the middle of “unexplained infertility.” My heart ached. When I read the lyrics to “Nella Fantasia” -I called him – if we ever have a girl, can we consider Nella for a name? I read him the song and shared your family story, but he wasn’t convinced. Months passed; our journey led us to adoption. In that process, we found ourselves awestruck at the unexplained events in other lives leading us to where we are today. Our caseworker began working in adoption because of her own difficult path to adoption – she brought more healing to my life than I ever could explain.
On Oct. 27, 2011 a woman who couldn’t explain the reasoning behind her pregnancy found herself in labor on an interstate in CO. She followed the hospital sign to the only hospital in the nation with a well developed adoption program – developed because of unexplainable attitudes toward adoptive families and birth families. After talking with the nurse, and the adoption liaison, and after hearing her little girl’s first cry, that beautiful woman chose to make an adoption plan. She chose my husband and I to parent our sweet daughter. When my husband and I sat across from each other the day of our daughter’s birth – the same day we were chosen to be her forever parents – we returned to your blog. We reread the lyrics. And we knew her name – Nella. I will celebrate my first mother’s day this Sunday, one week after our Nella’s adoption became final. In the end – although I don’t understand it all, I can find nothing unexplained.
Thank you for inspiring us all.
Adrea Tilford
http://cultivatingteamtilford.wordpress.com/
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Immediately after Daniel was born they placed him on my chest, and I felt thrilled. Baby number 3 was here, and it had been SO much easier than getting our other babies here. Then he opened his eyes, just for a second, and worry flickered through me. I hoped that I was wrong, that it was the way he only half opened them, or that I was seeing something that wasn’t really there. After all, nobody else seemed concerned and with his eyes closed he looked just like Will did as a newborn.
But when everyone else had gone and Brian and I were alone with one of the nurses, she asked us if Daniel looked like our other kids. I knew then what she was going to tell us, and I was right. She said that Daniel had some characteristics that indicated Down syndrome. To say that I felt overwhelmed when she told us this is an understatement. She assured us that the pediatrician would check him out and that chromosome testing would be done to confirm, but I knew. I knew the diagnosis was right.
Then I cried. I cried because I was scared. I felt unprepared for life with a child with Down syndrome. I felt overwhelmed with the responsibility of being a mother to this sweet boy. But I hope that I can rise to the occasion. When I announced his diagnosis on my blog I quoted C. S. Lewis who said, “There are far, far better things ahead than any we leave behind.” I believed it wholeheartedly when I posted it, and although Daniel has only been in our lives for 8 weeks I already know it’s true.
~Elsha van de Boogaard
A miscarriage five years ago brought me perspective and insight into my own strength. I believe the beautiful moment in the unexpected was realizing that I could turn sorrow into positive energy, both at work and home. As a hospital leader focused on improving processes and patient experiences, I thrive on finding the “right” icebreakers and the “right” words to inspire change and buy-in. After reading one of your blog posts, I even played the Macy Gray song, “Beauty in the World,” at the beginning of a meeting with my boss in attendance – and she loved it, by the way! Now, I’m a working 33-year old mom of two beautiful daughters, ages four and three. I’m in a state of constant improvement with them too, only I’m learning there aren’t really “right” words to inspire change and buy-in with neither toddlers nor hospital employees! The beauty in making improvements lies in our actions and decisions; that is how we consistently set an example for others to gain their respect and trust. My husband and I just discovered that earning 14 stars on a star chart with the end reward of a daughter date, like planting flowers, has been the motivator for positive behavior with our two girls. I should have picked that up from reading your blog sooner. Since discovering your blog a little over three years ago, I feel like I’ve set a better example as a mother, wife, friend, daughter and employee, simply by taking time to enjoy the beauty in the world and share our meaningful moments with others. I’ve been inspired to capture our family living life to the fullest and even make three Sisterhood books with Microsoft Digital Suite! Your inspiring words have not only touched me, but enabled me to make a difference.
Thank you,
Christina
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Never before did I imagine the path my life would take one month before the birth of our third child, Mylah. At 32 weeks along, it was discovered that our precious baby girl had a Congenital Heart Defect called Tetralogy of Fallot. I was shocked, stunned, and paralyzed by the realization that the precious baby I was carrying all these months had a heart problem! To me it surely meant death, nothing less. How can a baby survive with a heart defect? Luckily for our family we would put in the care the best team of Cardiologists and Surgeons, and when Mylah was born and only five days old she underwent her first surgery. She had a shunt placed in her heart, which allowed her to thrive and grow for six months! Then only two weeks ago, she had her full heart repair. In all of this trial and heartache I have learned one thing. EVERYTHING happens for a reason, all of life’s experiences make you stronger, and to never take the little things for granted. Almost loosing a child and watching her suffer changed me. I am more patient, calm, enduring, and brave. She helped me to see what life is really all about. She amazes me daily and I am so grateful for the chance to go through something like this, it was an honor to have learned everything I did.
Lara H.
I wish you knew my sweet little Violet and all that she offers to the world and those around her. She is two years old and has a delightful belly laugh that can bring a smile to your face on the hardest of days. She has transformed our world and given us a deeper, more vivid life. She has taught us to embrace all that life offers with no judgment, just gratitude and simple joy.
Violet has an exquisite palate. She will devour every dish I prepare, whether it is coq au vin, spring vegetable risotto or a hearty spaghetti bolognese. You would never know that she came home from the NICU at six weeks old with a nasal-gastric tube, and that we were told she would never be able to eat on her own. She defied all medical judgment and after having a feeding tube for her first year of life I smile proudly as she enthusiastically feeds herself at the dinner table and then signs to tell me “More”.
I often ask my three children, “Raise your hand if you want to .” Violet doesn’t merely raise one hand. She throws both hands up in the air. She wants to do everything, and with a huge smile and a sparkle in her eye. She raises her left arm with exuberance along with her right, even though her left side has increased muscle tone and is very hard for her to use.
One of my favorite memories from the last two years is when Violet first stood up on her own in her crib. It was well past the time that most parents would welcome this milestone, and for that it made it even sweeter. Our entire family of five stood in her bedroom jumping up and down, clapping our hands furiously and shouting, “Way to go Violet!” I love when small things evoke huge meaning and appreciation, when by most they would be overlooked or easily dismissed. I can still feel the elation we all shared, and I can still see Violet’s face beaming while peeking over her crib.
Today I saw my eldest daughter Lily, who is 4 ½, lean in close to Violet, and say, “We’re sisters forever, okay? Let’s shake on it.” And Violet was quick to make that pact, an impenetrable bond for life.
My sweet little Violet is a warrior. She is stronger than I can ever hope to be. She works really, really hard, but masks it with her smile and laughter. She wants to try to do everything, just like her twin brother and older sister. She beats her hand on her chest to emphatically tell us, “Me too!” She wants in on the action. Don’t count her out.
Violet was born with an Apgar score of zero. She went through two very long resuscitations and we were told she would not make it through the first night of her life. Violet proved them wrong, and she has been tenacious to keep proving people wrong who make assumptions about what she can or can’t do. Violet is diagnosed with cerebral palsy, but we rarely say those two words out loud. It is only a diagnosis, and has nothing to do with the amazing little girl she is growing up to be. It doesn’t define who she is or who she will become. She will make her own path in life and she will do it with determination, verve and an infectious belly laugh that brings pure joy to all those around her.
Heather Bell, Violet’s mom
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I had it all planned out, growing up. I was going to be an archaeologist. I was most definitely going to be a mother and a wife and own chickens and a dog.
In fact, for the last 7 years, I have spent about 80% of my life in bed. Whilst at university I was struck down with M.E. Or as it is sometimes known, Chronic Fatigue Syndrome. Suddenly I couldn’t even get through a whole day, my energy plummeting at random times so that I had to lie quietly doing nothing, or worse still sleep all afternoon hours in an effort to make some small spark of energy return. For seven years I have watched from my bed as friends have graduated, got married, and carved out careers for themselves.
There is nothing that can stop this being hard, however it has also been a gift of sorts. It has focused my mind into thinking ‘what do I want to do when I am awake?’ Those rare hours I’m not stuck in bed so tired I can barely breathe. My very own wild and precious hours.
Thus, I have sat with a friend at a vantage point overlooking my beautiful city, with rain pouring down on our heads and a glass of wine in our hands, clouds rolling across the valley. I have planted wildflower seeds on my windowsill so there will be poppies and cornflowers in my sight this summer. I have graduated with a first class honours degree from a university which allows home study. And today, having slowly written a novel for the last five years, I have a letter in my hands from my dream literary agent. ‘I am very interested in your writing voice, I would love to read more. Send me your book asap.’
My story is a confusing path. I have three children and have been married for almost nine years. A a few months ago I found out my husband had been sleeping with sex workers for half of our marriage. I had miscarried three times in that time period which was probably a direct consequence of his actions. Despite all of this I am so grateful to be living in the truth now. I am a single mom of three young children and I feel so free. There are times when he still does things that are totally asinine that really negatively affect us, but I know what it’s like to live in insanity and peace and truth are so much better. There is great loss here and I am not afraid to feel it and cry but I’m also totally free to be happy.
My blog
http://www.iwanttolivenotjustsurvive.blogspot.com
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THE WHITE BUTTERFLY
Today I’m a small white butterfly. Yesterday I was Edoardo, a wonderful little boy.
Unfortunately I left my parents very soon, for a brain tumour: I was two and a half years old.
Now, I’m happily flying on my garden, finally free, enjoying my past life as a butterfly.
Just flying… no more pain, no more hospital.
I really do not know why, during my disease, I received palliative care just at the last week of my quickly life, after my parents fighting with the medical staff of the hospital, in order to obtain that care. It was terrible. The time of my disease without palliative care was really hard: I suffered a lot, I did not sleep for two days, I felt sad and guilty.
With the right palliative treatment I was finally free from any mental and body pain. It was unbelievable. During that time I could show to my family how happy with them I was in my life and my parent had the possibility to describe to me how important for them I was. We had time for each other.
We were flying together exactly how I’m doing now on my garden.
(sorry if I put my comment more times but I cannot see it on screen.)
Hi, I have a 12 year old daughterwho was diagnosed with Cystic Fibrosis at 9 months old, she does well health wise as long as she takes all her meds,13 different meds a day plus breathing treatments, and therapies, and lots of pills just to digest her food, weight has always been a battle (difficulty gaining, this year she began loosing weight and her doctors could not figure it out. After alot of blood work we were told last week she also has Celiac disease. We are now awaiting an endoscopy to confirm and then we will have to change her diet, the challenge will be maintaining her nutritional needs with the restrictions of Celiac.She is a brave girl and takes it all in stride, we are proud to be her parents. I feel i must thank you for demonstrating how to face hard times with grace and determination.
I can’t help but remind myself as I’m reading all these touching stories to quit my belly achin’. Wow! But this did get me thinking about my own stories and how maybe I could encourage someone else.
My first attempt at love ended with my high school sweetheart breaking my heart right in two. My second attempt at love was even worse. After 2 years together, he left me. On my birthday. In a hurricane. (not metaphorically speaking…literally..a literal hurricane.) 3 months after he proposed. In front of our church of 300-ish people. Where my Dad was the Pastor. I sure didn’t see it as blooming then, but I see it now.
The 3rd time was the charm, though, and while not all 9 years have been 100% bliss, it has been and is really good. I thought I’d never recover from that heartache. I did. I thought couldn’t face everyone after it happened. I did, and they were wonderful. I thought I’d never love again. I do. I really didn’t think I’d ever laugh about it, for goodness’ sake. But, I am.
I guess life really is the sum of all these little parts. The good, the bad, and all the in between make us who we are. It’s up to us not to shrivel up and wither away, but to bloom. Thanks for blooming, Kelle, and for sharing it with all of us.
Six years ago, my then almost 15 year old soon was injured in a horrible car accident. Before the accident, he was a great student and an incredible athlete. He was the quarterback for his high school football team (as a freshman!) and on traveling tournament baseball teams. He’d been already scouted by colleges, and was determined to because a Gator, studying Marine Biology. The accident changed everything. For me, the worst moment was hearing the trauma doctor say “I don’t know if he’ll make it”.
Tied down completely from head to toe, he hadn’t spoken in many hours. His face was covered in blood. As they were taking him to have a test done, I put my fingers under his and he squeezed my fingers. I looked at his face, and two tear marks were running down his face, leaving a trail through the blood. But, my son has an inner strength and spirit that is amazing. Even though he had to face the fact that he was unable to return to school or play sports anymore, he has not only survived, he is thriving. Now a wonderful, loving, compassionate 21 year old man, he is living with my mother and taking care of her. He’s back in school, wanting to become a Physical Therapist. And he’s become a Professional Disc Golf player – yes, he figured out a way to once again play an organized sport. He’s shown me that living with a traumatic brain injury and severe PTSD doesn’t have to hold you back. I love him and respect him so much.
I knew right away I needed Bloom not just for me but my sister who had a daughter with Downs,she was the cutest little blonde haired blue eyed beauty.When I see Nella I see Stephanie,I remember the last time I was with her I stopped at my sisters before her heart surgery and she ran into my arms and I picked her up and she said “DANCE” and I twirled all around the front yard laughing and her smiling.She was 7 years old and heading to DesMoines to try to correct her heart.She didn’t make it after 2 attempts and now every time I hear the song by Elton John no matter where I am I cry for my TINY DANCE.
Lessons I’ve learned since my brother was born 25 years ago with Down syndrome.
My parents taught me lesson #1: people take their cue from you, treat him different and others will too. I always supported him, always cheered for him, always helped him. When my peers saw that, they followed. And my closest friends… they never noticed he was anything but one of us.
Growing up, being different wasn’t an issue and it wasn’t an option, which leads to lesson #2. Anything I could do, my brother could do; sometimes he does it better.
After hearing his story, people often ask if I swim. Yes, I swim. But my idea of swimming does not involve Speedos or hours of flip turns, breast strokes and chlorine-soaked hair. He is, without a doubt, a better swimmer than me.
The 3rd lesson is give yourself permission to dream. And when you do, dream BIG!
Last summer, we spent two weeks in Greece, watching my brother, a member of Team USA, compete in the Special Olympics Summer World Games.
The thrill of seeing his training culminate on the world stage is indescribable. We knew the competition would be fierce so we concentrated on the incredible opportunity and focused less on outcomes.
After he’d won three medals, a friend emailed “I just want him to win a gold medal. It doesn’t feel complete without that.” I suddenly felt extreme pressure. People were expecting so much from him. Didn’t they understand we were already proud of him? Then it hit me, others were dreaming BIG for him. If they could, why couldn’t I?
That afternoon – I went to the pool determined to see him come home with that gold medal. The minute I allowed myself to dream big – well, I’ll let him finish that story…
I have found beauty in my family. I never would have expected to have 4 children with food allergies and severe eczema from infancy to 4 years old. I would never have ever thought that my 2nd child would be diagnosed as mildly autistic. I would have never thought that we’d be dealing with bad finances right now. I never would have thought that having a family with these unique characteristics would make me feel isolated at times and not able to socialize with people. But, I have found joy, beauty, forgiveness, grace, humility, wisdom, laughter, tears and hope in all this. Life is challenging and sometimes it feels more like I’m moving backward. But then you hit those days where the sun is shining and you move forward. You look at the present, you learn from the past, you hope for the future. That is what drives me. Among other things my faith in God and my love for family and friends. Wouldn’t change it for the world.
Sixteen and pregnant. No, this was not some MTV show, it was indeed my life. Needless to say, I was absolutely scared to death. I was a straight-A student, kind and friendly to everyone, and yet here I was. Her father “assumed” I wouldn’t be following through with the pregnancy, but clearly he wasn’t aware of what a fighter I was and am. I gave him the option of staying or leaving, but my mind was made up regardless of his. I had my daughter my senior year of high school.
She had the most amazing blue eyes I had ever seen. I swear when you looked into them, it was like she was looking into your soul. I looked at her and the only thing I could say at that moment was, “I love her.” Perfect doesn’t even begin to describe her and that moment. It’s strange how you can be so focused on one thing, yet have a million other thoughts swirling somewhere in some other part of your mind. In one of those far off thoughts, it clicked that I was going to have to fight like hell to give her a life she deserves. And that I did.
I graduated high school with one kick butt GPA, and I continued from there. I’m not working in a law firm and raising the most amazing little girl.
I’ve done a lot of things wrong in my life, but the choice to be a mom is far from one of them. We are so connected that it often times scares me. I’ve learned so quickly that you are only as happy as your saddest child, and how true this is. When she is happy, I’m happy, and when she hurts, I hurt. We have struggled, and we continue to struggle from time to time, but it’s life, and we have learned to roll with the punches.
I was 32 and I had a toddler and we were ready to have another baby, because that’s what you do, right? Because we were living the perfect little life. And then I miscarried that baby….and then I got cancer. And then….my parents got divorced. It was pretty much a year that sucked. There were blood, sweat, and tears. Lots of tears. There was baldness and constant nausea from the chemo and every little thing was hard to do. Even sitting and rocking my little not-yet two year old was so hard it was nearly impossible. It was ugly and difficult and yet….we survived it and we survived it in such a magnificent way because, somehow, out of the pain and hardship of that year, our lives opened up. We realized how important our marriage was. We appreciated our little Anna so deeply and wholly. We saw how supportive and wonderful our friends and family were. We were blessed in so many ways, in ways that continue to follow us now, more than three years later. I feel genuinely happy with my life–which is more than a lot of people can say, I think–and big part of that comes from having gone through a time when I wasn’t sure if I would live to see this age.
P.S. Miracle of miracles, I am now 29 weeks pregnant with #2, something that was a completely unexpected (and wonderful) surprise (chances of conceiving after the chemo I had were slim to none for a woman of my age).
12 years ago on April 25th I was told I had Leukemia. I was 14 years old, scared and incredibly confused. 136 weeks of intensive chemotherapy followed, and on November 25, 2002 I had my last treatment. So many moments, so many lessons – and I still wonder at times on how I managed to get through it. This was the first time my world was turned upside down.
In July, it will be one year since my world was again turned on its head – when my only sibling, my brother, Josh, died. He was 29 years old and had been home in NC rock climbing with a friend. He was incredibly experienced in his sport, but accidents happen. He fell, breaking several cervical vertebrae. It has been 10 months and I am still trying to wrap my mind around what happened.
My life has been blessed. So many positive things, so many wonderful memories. I am thankful to say I have very few, if any regrets. Actually I can’t think of any at the moment.
There is no guarantee that life will be free of pain and struggles, in fact one could almost guarantee that there WILL be pain and there WILL be suffering. But my hope, my faith, and my family all remind me daily that no matter what struggles come – life, because of it’s very existence, is worth it.
My battle scars help make me who I am, and while I’m not perfect, I rather like the person I have become. We all fall down, we all take things for granted and we all forget reality from time to time – but it’s days like today when I remember and am reminded that each day is a gift. Each morning when I wake I have been given another opportunity to shine my light into this world. Tomorrow is not a promise. Today is. And one day, my “today” will be my last. My hope is that I will continue to make each day count. To give thanks and praise for the One who gives life.
At 16 I was an average teenager. I had good grades, went to church every weekend with my parents and had a boyfriend. At 16 though, I thought I was invincible, and in love. At 16 I got pregnant.
I spent 9 months taking care of myself and my growing baby while finishing out my senior year of high school, working full time and meeting with an adoption counselor. In April of 2003, the night of my senior prom my water broke, and the next day I gave birth to a beautiful baby girl, let’s call her “R”. I spent two amazing days with that beautiful bundle of joy before handing her over to her forever parents. I knew adoption was the right choice for “R”, but I had no idea how much it would change my life. The next 9 years were full of ups and downs. Severe depressions, rebellious stages, confusion…you name it, I went through it. That beautiful little girl turned 9 last month. I have gotten to watch her grow through photos, and visits. I have developed a beautiful relationship with her and her parents, all things I expected from the open adoption experience. What I didn’t expect is that I would be mentoring young girls who face unexpected pregnancies, that I would volunteer time at my adoption agency explaining open adoption to those who want to adopt, that I would be interviewed on a radio show and asked to speak to high schools. The joy of helping others, and watching my daughter grow, and the huge hugs I get every time I see her was worth all the pain and heartache. That mistake I made in high school, sure turned into one amazing blessing.
I’m currently in the middle of my story. Quick recap: I’m the girl that has had everything pretty easy in life, until 2 years ago, when my husband and I decided to get pregnant. We tried for a year, with disappointment after disappointment, until, finally, we stopped trying so hard and boom! we were pregnant. We were scared shitless but so excited at the same time, and knew that this was God’s perfect timing. 6 months ago, I gave birth to a healthy baby boy. So I thought. In a nutshell, our son has had a host of health issues that, while thankfully not horribly serious, were not what we expected. And I’ve been fighting it since day 1. Fighting the sadness, the anger, the disappointment, the guilt. Fighting the “shoulds” in my head…he should be fine, he should be an easy baby, we should have this down by now…I’m realizing, slowly but surely, that the life God has planned for me, is, (shocker!) not what I expected. But it is GOOD. It is shaping me, growing me, blossoming into something so much more and so much bigger than I ever could have expected! Through my son I am learning how to love others more, have more patience, to let go, to be fully present and live in the moment I am in. I’m also learning how to function on little sleep, how to get reflux stains out of clothes and that screaming “F*** it!” at the top of your lungs with the windows open will provide your neighbors with some comic relief. Most importantly, I’m learning that we, our family, are right where we are supposed to be, that God has planted us here and we are blooming into something so much greater than I ever could have imagined.
-Alisha
(alisha-mommymusings.blogspot.com)
Reading all of these incredible stories I am struck by how amazing people are. To overcome hardship & come out the other side full of love, faith & joy. We are all extraordinary creatures.
My story is a lot like yours… a childhood with divorce, a gay parent, growing up in a small town trying hard not to stand out as “different.” Our family struggled for many years… but there was always love.
As a young adult I followed my dreams & met with success in my chosen career. Time marched on & I began to accept that I might not meet my “man of dreams”. So I focused on myself & followed my heart enjoying the things that I loved… one of which is collecting antiques. Little did I know that one Sunday flea market I would find my dream man standing right in front of me.
We started trying for a family five years later. Thrilled to see those two little lines after a year of trying, to watch our perfect little boy tumble & roll in every ultrasound, to get results from bloodwork that we have nothing to worry about. Quinnlan Edward surprised us by arriving five weeks early. Hours after his birth he surprised us again with his little something extra. We surprised ourselves by moving through grief, sadness & on to joy & acceptance with the support of friends & family. As you know, this road isn’t always smooth, but the scenery is amazing.
Here we are ten years later with three little boys, one dog & a minivan. As I write this I realize that the thing I am most surprised about is the minivan… I had always said, never never never!
You just never know where “never” might take you…
I feel like as one of your younger readers, I might be expected to pass up this challenge, but at twenty years old, I’ve been through a lot and learned much about myself and what I can endure. At 17 I entered my first ever serious relationship and fell head over heels. Like teenage girls tend to do. But I had gotten myself into way more than I had anticipated when I learned that my boyfriend was not only all the things I loved, but also a cruel, manipulative man who found it acceptable to abuse me and beat me down. He would tell me how worthless I was, how he wished I had never been born, how I should end my life because it would be best for everyone. Some of the most hurtful things I will probably ever hear in my life. I sometimes cringe when I think of the things I allowed to go on in that relationship, but I know that because I was thrown in front of that oncoming car in a road I would never have chosen for myself, I’m smarter because of it. I know now that I’m worth more than that and even though the pain was crippling, and it kept me up for more nights than I can count, it helped mold me and shape me to be somebody stronger and more outspoken. Someone who is willing to stand up not for just others, but herself as well. And I like the person I became from that hardship. This girl knows her stuff and she won’t let anyone treat her badly again. That’s my story.
I just want you to know how much I admire you for all you do for your children, and for Nella and the Down Syndrome community. The world needs more people like you in it. More mothers like you!
-Courtney
When I was pregnant with our second child, we were offered the first trimester screening. I was only 32, and we were sure that everything was fine, but we still had that brief “what if” conversation. We decided that we would to know if something was wrong. Our first indication of a problem was when the doctor performing the exam kept re-measuring the area behind our baby’s neck. At 12 weeks, the average nuchal thickness is 2.18mm; our baby’s measured 5.1 mm. We were told that this alone greatly increased the odds that our child had a chromosome abnormality. We were early enough in the pregnancy to get a CVS. Two days later, a genetic counselor called with our results. Our unborn son had Down syndrome. My husband and I didn’t know anything about Down syndrome, and we were confused, shocked, scared and angry as the genetic counselor rattled off a list of things that would be “wrong” with our child. Through Internet research and connecting with the local Down syndrome association, we learned what the genetic counselor never told us — Down syndrome is not a death sentence. Our son could live a long and productive life. We learned that siblings of people with Down syndrome grow up to be more patient, empathetic, and understanding adults. We had the opportunity to meet other families who had a child with Down syndrome, and we realized that their families were just like ours. We finished mourning what we wouldn’t have and we looked forward to what we would have. Looking back, I am so glad we received our diagnosis before Mason was born because we had the extra time to learn about the diagnosis and make an informed decision. It afforded us the opportunity to look beyond the stereotypes we had in our head and realize how beautiful it is to be “different.”
I have an amazing life. An amazingly different life than what I envisioned, but still equally as wonderful. My husband is a young military veteran, we had two young redheaded children, he had a great job, we bought a home and all was perfect.
…And then there was Mabel…
Our third baby and the only one without red hair. She was stunning and yet compelled my curiosity from the very beginning. She failed her hearing tests right away and we went on a slip and slide of emotions soon after. When she started missing milestones our life became a whirlwind of doctors, therapies and a dark diagnosis train.
Not only can she not roll over, sit up, or swallow well but she couldn’t see, couldn’t hear, was having constant seizures, and slept constantly.
I spun into a grieving process that took place in the middle of doctors testing for some of the most rare diseases that you’ll find and haven’t quite come out of it yet.
Today our girl is almost 22 months old. She is still undiagnosed and we have no answers as to why she is so weak, cannot see, has uncontrolled seizures among the handfuls of other symptoms.
What I do know is that I am stronger. I am much more brave. I am capable. I am diligent. I am focused. And I wouldn’t have slowed down long enough to learn many of the greatest lessons that I have during the last two years with our baby. She has the biggest blue eyes you will ever see and she laughs at nothing. She is happy and innocent and pure to the bone. She is my gift–my sweetest gift and I am grateful every day that I get to be her mom.
It’s hard. It’s not at all what I thought it would be. But it is absolutely perfect and wonderful just the way it is.
For more info on Mabel or rare disease please visit us at: http://www.rameelinlarson.com or “Mabel’s Able” on facebook.
Thanks Kelle for the chance to share about our girl!!!
3 days before my daughter was born, my husband and I were pushing our son on a swing during a neighborhood fair. Out of nowhere a teenage girl with Down syndrome started swinging on the swing next to our son. It was her birthday, she told us. She engaged us in conversation for 5 or 10 minutes. Asking about my soon-to-be-born little girl, commenting on how cute our son was, and sharing how her big brother used to push her on the swings. She was beautiful.
3 days later I gave birth to my sweet girl and knew instantly that she had Down Syndrome. You know what’s strange is that I think I asked for her, and the “angel” that visited us on the swings was reassuring me that everything was going to be fine. The day Clove was born I experienced an unexpected shift pointing me down a different branch on this tree of life. I had to mourn the branch I was on, the direction I thought my life was going. I had to follow that mental path all the way down to the end, and confront all of the things I had planned to see. The branch I thought would carry me the rest of my life was crumbling. Once I allowed myself to let go of that, to shift my focus forward instead of backwards, I started catching glimpses of new beauty and these little miracles that happen everyday. I’m starting to realize that I’ve been given this rare opportunity to view the world differently because of Clove. She is showing me how unique, varied, and beautiful life can be, and how it’s such a waste of time to worry about the things that don’t matter. Family and love matter.
thanks for letting me share a bit of my story.
and kelle, thanks for providing this wonderful place in blogland for me to find comfort and inspiration.
~erin
http://bubbleandwish.blogspot.com
A little over 13 years ago, we had the privilege of accepting a very special gift into our lives. This gift arrived–tiny, fragile, and precious. There were no bows or ribbons tied on this gift, there were no cards attached– this gift was a baby boy born to us. Although our hearts were big and our eyes were wide with amazement when we first laid eyes on our bundle, we couldn’t have comprehended in that instant what depth of meaning, what breadth of gratitude, what width of life experience, nor length of love our hearts would grow to hold. Words are not adequate, nor do justice to the way this gift would change our lives, turn us upside-down, revolutionize every ideal we professed to hold, and truly make us different people.
If a tag or card had been attached to this most precious gift, I wonder what it might have read… maybe something like this: To you~ From God~ Though you do not know it now, you will come to see that you hold in your arms, a life, most dear to Me. He’s a special boy who will not do all the things the world expects. He won’t say his ABCs and times tables, nor will he run the fastest in his class. He won’t win the trophy for every sport or even throw a ball well. He won’t be the envy of every perfect family. He’ll struggle to do some of the most basic life skills. He will rely on you for everything and you will be unsure of yourselves as you help him through the growing process. Do not be afraid, because I haven’t given you this precious child in error. He is on loan to you, to care for, guide and love. He will open your eyes to how special life is, he will cause you to question and ponder and ultimately secure your faith in Me. His heart is loving and he’ll love you unconditionally. He won’t judge others for what they wear or how they talk. He’ll enjoy the simple things in life. He’ll wake up every day smiling from ear to ear simply because he’s happy to see you. When you think things are too difficult, he’ll make you laugh. When you think life is too complicated, he’ll ask you to sit with him and just enjoy the moment. Those moments will be like no other and you won’t want to trade them for anything in the world! Trust Me.
This gift I write of is our oldest son, Nathan. He was born with a rare condition called Angelman Syndrome. He is truly a special gift and blessing to us. His belly laugh is contagious, his ‘two-ton-bear-hug and full-body-tackle-until-you-roll-backward onto the floor’, is unmatched, and the perseverance to attain what he sets his sights on is amazing to say the least. He turned 13 years old last month!
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I was 16 years old when my world as I knew it was crumbling. I found out I was pregnant. I was ashamed
to go back to church and felt everywhere I went, judging eyes pierced through my growing belly.
I was left all alone to figure everything out myself. I literally would feel a spinning sensation in the oddest of moments.
Friends would be laughing about something and talking about the upcoming weekend of fun and for a moment, I would join in with the laughter. It would hit me like a ton of bricks. It would start with my stomach and work its way up
through my body. A wave of heat flowing fast through my veins and my spirit. All the words of others being exchanged would suddenly drown out. I would try as hard as I could to muster a smile. I didn’t dare let anyone know what I was going through.
How could in the happiest moments being shared among friends, could I be sitting here downing in anxiety? My eyes would start this spinning sensation and I was in this tiny scary box only I knew. And I covered all this up. I went through this emotional pain all alone.
There were moments I wanted nothing of it. And then there was times I started to feel an inner strength growing. My doctor allowed the pregnancy to last 10 months before inducing labor. I could barely walk. Not only emotional pain, but
a manifest of very physical pain started to shape.
When she was born, I still felt helpless and alone. But through every night I would just sit and rock her for hours. She didn’t need to be rocked. I did. We were both babies.
That baby girl is now 16 years old. I did it. The shame and dark and scary was dropped off and replaced by my first intangible I had ever felt. She gave me a gift I never knew existed.
We decided to adopt a child with Down Syndrome nearly 2.5 years ago. In October of 2010, we were matched with a 6 month old baby boy who also had Esophageal Atresia. In January of 2011, we brought him home after his 8 month hospital stay. For 3 months, our precious Ethan thrived in our arms at home. He filled us daily with love, laughter, and beauty. In May of 2011, Ethan was hospitalized as his esophagus had once again strictured down. Over the next 12 months Ethan battled surgery after surgery, many days fighting for his life. We battled hospitals trying to get him the best care possible. Our adoption was still not final and thus began another battle to legally make Ethan ours. Today, our sweet boy is hospitalized in Chicago recovering from yet another surgery. The distance and not being able to have him close are devastating. He has lived 21 months of his 24 months of life in a hospital. By God’s grace, he still smiles. Every pain, every obstacle…when one day turned into two and two turned into 365…every minute that ticked by slowly as though we were racing against time…every breath holding, heart wrenching surgery that left us on the edge of our seat and clinging to prayer…each plunge into darkness and climb out of despair. Every moment was worth it.
http://www.littlewondersofourlife.blogspot.com
Kelle –
Thank you for sharing your story everyday, and reminding me how to bloom. Here’s my story on how life lives on.
When I walked into the room and saw all the tubes and wires, the lung machine breathing for my dad, my blood ran cold and my hands immediately went to my pregnant belly.
Tears streamed down my face as I listened to the doctor explain that his disease had progressed and that it was time to say good bye. All I kept thinking was “two more weeks. Two more weeks and he would have met his second grandson.”
But it wasn’t meant to be.
In the days following, my husband was painting, moving furniture and setting up the crib, while I was on the phone with the pastor making funeral arrangements.
On April 30, I said my final goodbyes to the man who raised me.
Two weeks later we arrived at the hospital before the sun even came up. It was induction day, due to the colestatis, and I was scared. More scared than I was when I had my first.
I heard horror stories about being induced; long painful labor, babies that never wanted to appear and emergency c-sections.
But I had nothing to fear, because I had an angel with me that day. He made sure our little redhead boy greeted the world to laughter and joy.
And as little red snuggled into my chest, tears filled my eyes. When they asked what his name was I told them Grant and his middle name is Benjamin after my dad.
I learned life lives on in those we love. Each day as I look into the blue eyes of my redheaded son I remember my dad, and those precious years we had together.
Thanks for letting us all share such wonderful stories…I’ve been shedding tears reading each one.
On Friday, March 27, 2009 at 7:16pm my world changed forever.
I was exhausted. I had just gotten off work, pulled some meat out of the fridge to make burgers and sat down to put my tired feet up for a few minutes before starting dinner. I was five months pregnant with our third boy. Our older two boys, Sam and Louie were playing baseball in our front yard with a group of neighborhood boys when a strange car pulled up.
The two men quickly approached our house and identified themselves as detectives. They exchanged cordial introductions and verified my identity. Then they said the most awful words,
“Your brother, William, is dead.”
I felt my legs give way and I collapsed to my knees. They continued to talk. I asked questions. The details of that evening are blurry. I remember going to my Dad’s house and to tell him that his son was gone. I tried to find the words to explain everything to both boys (7 and 4 at the time) who just saw their uncle only four days earlier.
Our grandmother had passed away almost months before that sad day in March, ten years to the day that our mom took her last breath. I don’t know for sure, but I think that very event was his catalyst.
My brother, William, committed suicide.
In the three years since William’s passing, our lives have completely changed. We welcomed baby Jack to the family in July 2009. And in March 2011, my Dad moved in with us…recovering from a broken leg, a variety of medical problems and his ever daily struggle to manage his Schizophrenia.
This is not what I had planned for my life, but we are making it work.
I started writing a blog when my Dad moved in with us. http://clubsandwichlife.blogspot.com
Owen arrived April 11, 2012 and they let me hold him for about 10 minutes before they took him to be looked over. They mentioned his right ear seemed to be “folded over.” My first thought was not much of anything- I was in happy baby bliss.
We later saw it wasn’t just simply squished- there was obviously a deformity in its shape. It took a little bit of time and more information on this condition, to bring me to moments of sadness, worry and tearfulness.
What Owen has is called Microtia, and he does not have an ear canal, which is called Atresia. I couldn’t stop reading medical articles, support group comments and information on hearing loss even when I knew it was getting the best of me.
My my life is beautiful and happy- but ordinary. The fact I gave birth to a child that is 1 in 10,000 confused me. It is not genetic. It’s not because I got a little lazy with my pre-natal vitamins. It was not caused by the X-ray I had. It simply, just happened.
The cells that form your ears develop week 4 of pregnancy- the week I found out I was pregnant. My Owen, before I even knew he was going to be a part of this world, was already created just the way he is.
But as I worry about my little boy I am thankful. My son will have the ability to walk, talk, hear, see, play sports, bug his older brother, go to school and fall in love. He will still be that little boy with a runny nose and skinned knee that I daydreamed about the night before he was born. He is still perfect.
Krysta
http://worthyofbeingstoried.blogspot.com/2012/04/owen.html
The last four years have been a struggle — job loss, an unexpected pregnancy, then a child born with special needs. We are still digging out of a rut (more of a ditch after all this time)and it seems like we have a never ending list of things that go wrong — lost cellphones, car repairs, the list goes on…and on… Some days it seems like it will never get better. But then I realize all I have been given and have hope.
I’m just now seeing this, I hope I’m not too late.
My story starts with the little boy who, as one of the antenatal nurses said when she met him, wasn’t supposed to be.
My first pregnancy had never been easy. It started with a first trimester miscarriage scare (turns out that I had been pregnant with twins originally, but lost one) and bleeding that had lasted well into the second trimester.
Finally, at around 20 weeks my bleeding stopped. I was thrilled that I would finally have a normal pregnancy. Two weeks later, I woke up in a puddle.
I called the doctor, and was told that it was most likely urine, but that I should come in to be seen just in case. When I got to the hospital, the first amniotic fluid test came back clean. Then I had another gush of fluid, and the PH strip turned that sickly color of pink that let us know that my water had broken.
I was given two options. We could do nothing and deliver my son, who at just shy of 23 weeks had virtually no chance of survival, or they could attempt to stop my labor. Honestly, I don’t even understand why they gave me a choice. Uh, I’ll take the option where my son has a chance to live, thanks.
They pumped me full of drugs and antibiotics and steriods and somehow, by the grace of God, I was able to stay pregnant for 7 more weeks.
Finally, at 30 weeks I began to develop an amniotic infection and they had to do a c-section. My son was born grey, but alive. He weighed 2lbs 4oz.
After 7 weeks in the NICU, we brought him home. He had feeding challanges and because of my PPROM he was very tiny for his age. When he was older, he needed growth hormone shots every day to help his body grow.
None of that mattered though. He was alive. He’s now 7 years old, and he has taught me more about the world than any professor I ever had. When I need an example of pure strength, I look to my little man.
My story is unlike many, in the mere fact that at 26 years old, I am finally understanding what my purpose is with my one precious life.
For most of my life I have been afraid to live, to love, to let go, that all the happiness that has come into my life, never felt like enough.
I struggled with the realization of my sexual abuse and the hatred I felt for myself and those who hurt me, holding ever so tightly onto the pain, instead of holding onto the beauty that always surrounded me, love.
I’ve always been an overly insecure person and I didn’t understand why, until I came upon your blog more than two years ago and it hit me-If you could get through one of the hardest things in your life, what made me think I couldn’t get through my own hardships?
Through your blog I have come to learn that happiness is what we make of it, and much like you have said over the years, To Thine Own Self Be True. When I read your words I am humbled by the pure joy that you exist, and that I exist, in the same world. Because of you I have found my true calling, and my dream now is to really help people overcome, through hope and truth.
My hope is just now blossoming and I can feel the weight being lifted off my shoulders. I know that whatever I’ve overcome, from sexual abuse to emotional abuse, negativity and self-hatred to insecurity and low self-esteem, that I am worthy.
I look around and see the faces of those who have never once left my side, even when it was easy for them to do, and I am happy.
Thank you for sharing your story with me and the rest of the world. You will never know just how much you have changed and helped the lives, of so many of us lost souls. Because of you, I have found the beauty in the ordinary, mundane, scary and lovely things that life has to offer. Thank you for saving my life, in more ways than one.
My blog: http://lessonsfrommylife-bykim.blogspot.com/
Graciously,
Kim Trevino
My son, Josh, had a total mental breakdown at age 12… six years ago. He was eventually diagnosed with Severe OCD, Severe Generalized Anxiety Disorder and suffers with bouts of depression.
To have an illness based on fear and irrational thoughts and behaviors, Josh is the bravest person I have ever met. What it takes for him to go through a day, and accomplish what he does, is truly an amazing thing to watch. I’m not just saying that because I’m his mother. He is an exceptional person. (Keep in mind… he is still an 18 year-old boy with all that entails. “Exceptional” does not mean “perfect.”)
I guess I would end this by saying I don’t know what tomorrow will bring for Josh and the rest of us. I cannot begin to fathom what his future will be. Every day is different. He’ll have really good days, and he’ll have horribly bad days.
But when it gets right down to it, I never knew what tomorrow was going to bring anyway… for any of us. All we have is this very moment. And we have a decision to make. Are we going to reach out to others? Are we going to spend time with our families? Are we going to make this moment count? I know my eyes have been opened a little bit these past six years, and I hope my choices reflect that each and every day God gives me.
http://www.belinda-asimplelife.blogspot.com and http://www.belindafaulkner.blogspot.com (Josh’s Journey)
I lost my mother to cancer when I was ten years old. Two years later, my father died leaving me a very lost little girl with two older brothers who pledged to take raise her. I grew up though, painfully, awkwardly, often lonely and not ever believing that I could love another person, lest they too were ripped from my life. My beautiful daughter Rachel was born when I was twenty -eight, the only good thing to come out of an abusive marriage. Alone again I reaffirmed what I knew to be true, that even though I had no mother role model, I would love my daughter the best that I could. A chance encounter with a wonderfully wise woman taught me all that I needed to know some years later; all children are gifted and all children have special needs. As the years passed, the seasons changed and Rachel grew into a beautiful but troubled young woman. She has struggled with eating disorders, self injurious behavior, substance abuse and mental health issues. And when things get tough, as they are wont to do – I softly repeat that mantra over and over. All children are gifted and all children have special needs. I reach deeply within to find the strength to help her through the next stage, to help her with those needs. All along, she is a gift, she is gifted, my life is blessed by her gifts. It may not be the story book ending so many of us as young girls dreamed about, I may not have had a mother to guide me (and oh how many tears I have cried over this) but I have been given the greatest gift of all — to be her mother. Yes, I am Rachel’s mother.
Hi, this is Sidney Claire. I’m Cindy Smith’s daughter and I’m the one who has severe anxiety. I’m not going to make this as well-thought out as my mom did, but here’s the main idea. I have severe anxiety and that really has helped me to bloom. When I was first diagonosed with it, it was horrible. I would constantly worry about things that I didn’t need to. I had trouble even simply sleeping over at a friend’s house. I’ve worked and gone through theray and I’m so glad to report, I have bloomed! I can now successfully sleep over at a friend’s house and barely sweat it. I’ve come so far and I’m so thankful for God and my parents! Although I’m not comletely worry-free, I am doing so much better than I could have ever imagined. As Sandra said, THIS IS ME!
Now I would like to talk about you. I really feel like I know you! I was reading you camping post and told my mom, “The Hamptons went camping!” I love your total honesty and hilariousness. I also love Lainey and Nella. I am completely in love with kids with Down Syndrome. I plan to be a special needs physical therapist when I grow up. Nella is going to be such a successful person along with Lainey.
Never STOP writing! You inspire me.
BTW:If you pick me or my mom(Cindy Smith, who used my account) for the book please put our stories together because this is OUR story!
I love you and your writing!
-Sidney Claire Smith
My unexpected adventure has been becoming a parent, a full-time cheerleader, caretaker, watchdog: a Mother. This may seem like the most natural and organic thing for a woman to become, however I believe we often overlook the challenge of rapid identity expansion that is involved with a positive pregnancy test. In a moment, a second, we go from one to two. I went from me to us, I to we. No longer was my body my own and at the time, I was not ready. Our wonderful little boy was a surprise that my partner and I had not anticipated, nor prepared for. We were not yet married and living in different states at the time. I can vividly remember sitting alone on the cold tile bathroom floor, 6 a.m. the morning of the 2011 Chicago blizzard, shaking with emotion and working intentionally to stay present and open-hearted, to trust. We talked, wrote, cried and connected about our news; abortion was not an option for me, and adoption was not an option for him. So, with very deep breaths we decided to whole-heartedly embrace this new life as a beautiful opportunity- and get married! My world shifted from one to three overnight. I was told once that true life is sacrifice. I think becoming a parent, as well as partner is a drastic transition we as women don’t give ourselves enough credit for. These decisions are life-altering, having tremendous physical, mental, emotional, and social impact. Pregnancy, parenthood and partnership have required bravery, patience, intentionality, perspective, compromise, strength as well as daily moments of welcoming, accepting and loving the unknown.
(Another story for another time: we found out our sweet baby, Everest, has Down syndrome three weeks after he was born. Our wild adventure continues!)
Rae C. F. Noble
raevolve.tumblr.com
My unexpected adventure has been becoming a parent, a full-time cheerleader, caretaker, watchdog: a Mother. This may seem like the most natural and organic thing for a woman to become, however I believe we often overlook the challenge of rapid identity expansion that is involved with a positive pregnancy test. In a moment, a second, we go from one to two. I went from me to us, I to we. No longer was my body my own and at the time, I was not ready. Our wonderful little boy was a surprise that my partner and I had not anticipated, nor prepared for. We were not yet married and living in different states at the time. I can vividly remember sitting alone on the cold tile bathroom floor, 6 a.m. the morning of the 2011 Chicago blizzard, shaking with emotion and working intentionally to stay present and open-hearted, to trust. We talked, wrote, cried and connected about our news; abortion was not an option for me, and adoption was not an option for him. So, with very deep breaths we decided to whole-heartedly embrace this new life as a beautiful opportunity- and get married! My world shifted from one to three overnight. I was told once that true life is sacrifice. I think becoming a parent, as well as partner is a drastic transition we as women don’t give ourselves enough credit for. These decisions are life-altering, having tremendous physical, mental, emotional, and social impact. Pregnancy, parenthood and partnership have required bravery, patience, intentionality, perspective, compromise, strength as well as daily moments of welcoming, accepting and loving the unknown.
(Another story for another time: we found out our sweet baby, Everest, has Down syndrome three weeks after he was born. Our wild adventure continues!)
Rae C. F. Noble
raevolve.tumblr.com
My story of learning to bloom is not about being a mother, but of learning to bloom despite not having the blessing of hearing a little voice call me “Mama”.
When I was a young teen, my family joined a highly religious community where I was taught that my value as a woman was based upon my ability to marry and bare children. Being a homemaker had been my heart’s desire since I was a very small child so I thrived in the atmosphere where such things were lifted up as virtuous.
But at 23 years old I was single, living at home, and “just existing” as a nanny. As much as I loved “my” children (one blessed with almond shaped eyes), I knew that I could not remain in this pattern forever. I realized that being single was just as much a gift as marriage and motherhood. I choose to step into the unknown world of singleness and bloom.
Eleven years later I am a successful Paramedic. I volunteer with my local EMS crew – spending as much time there as I do at my paying EMS job. I LOVE what I do. I feel a sense of peace when I am in the back of an ambulance with a patient.
I am a homeowner. I have recently discovered that I am a runner. I am a photographer. I am a writer. I am a cook. I am so many things that I would have never discovered if life had gone “my way”.
I did not bloom into the flower that I had expected. However, I have learned that the type of flower does not matter. What matters is that I have bloomed.
Sarah
http://www.swalkerparamedicranger.wordpress.com
Life does not go the way you expect. At 20, halfway through my science degree, I was pregnant. Baby’s daddy was in the army & was sent to the Gulf war, went missing & not expected to be found. Ali was born just after I turned 21, beautiful & perfect. It was mummy & daughter only for a few years. We heard her dad had been found & returned home, but had PTSD. We saw him a few times, but he wasn’t coping & the army sent him back to the gulf, then to Afghanistan & Iraq. He came back with severe PTSD & is now a recluse. Met & married T (at his insistence, I was happy being partners) when Ali was 5, her baby brother, CJ, came along soon after. T did not like being married, smoked, drank & degraded us all. I threw him out to protect my children. Divorce followed & we settled into distant politeness. I met AB 2 years later. We dated slowly & cautiously. At 14 Ali developed Immune Mediated Diabetes. Her immune system turned on her own body & destroyed her pancreas. She got so sick. We had 5 years of fighting the diabetes & often Ali herself, when she refused to believe in it or take her insulin, landing her in hospital time & time again. AB hung in there, biggest cheer squad a girl could have. I went back to Uni, did my nursing degree & fell pregnant with 1 semester to go. A million tests due to my age, Baby had a 1 in 32 chance of DS, but got the all clear. I turned 40 in April, had Zac in May, sat my final exams in June, graduated in July, scored my dream nursing job (surgical nursing in the operating theatres of a major trauma hospital) in September & started work in October. Ali got very sick in December & declared she’d had enough of treatment. At 19, she was an adult, stubborn & legally allowed to do her own thing. She passed away in January, from pneumonia. CJ was 13 & Zac 7 1/2 months. We miss her every day. What I don’t miss is seeing her so sick, watching her deteriorate, seeing her frustration with her illnesses. CJ developed hypothyroidism almost year later & is on daily tablets. Not as fragile as his sister, he’s coping well & being a fairly normal teenage boy. Zac is nearly 2 & awesome. He “knows” Nella as his “puter fren” friend online & often says hello to her picture. He loves to scroll through the photos & “tells” me what she’s doing in baby babble. My boys are lights in my world. I miss my Ali, I miss the woman she might have been & the things she might have done. We recently celebrated her 21st by going out to dinner, somewhere she might not have chosen, but where I would have liked to take her. None of this is life as I’d have predicted, or guessed, or necessarily hoped for. An elder patient, who lost his daughter & granddaughter & had his grandson paralysed in an accident a few months back, said to me recently that “we go on. It hurts & it’s hard, but we go on.” I agree with him. We live life & we go on. Kelle, your blog inspires & shows us the happy sides of life. And we can go on.
K.
In case anyone’s wondering AB is still here. Being Daddy, Stepdad & still the best cheer squad a girl could have. xx
I love Bloom because I truly feel like you, there is beauty in the unexpected and there is growth. We become better people. Our little girl Leightons kidneys were dilated in utero. The doctors told me not to worry, but I had a nagging feeling it wasn’t just the “pretty common” they were telling me, I wasn’t the one of the many patients he’s had and everything ended up fine. I was too young so it was very unlikely. I researched it and just felt she had Down syndrome, but didn’t want to really admit it to anyone even my husband. When she was born I knew instantly. I cant express in words the love I have for her. I call her my sole mate (sorry hubby). She is gorgeous, amazing, and so smart. Her siblings can’t get enough of her. No one can. She brings the best energy into our home…calms us, and brings so much happiness. You couldn’t believe the work we put into getting her to give us a smile, kiss, or hug. You don’t even know how I wish that would be the end of our trials, but no. Right now I’m sitting at her bedside in the hospital. She just had open heart surgery 2 days ago. Can you believe I have seen beauty in this trial as well? I can’t believe all the beauty in the medical field. It’s so complex what they do to repair these imperfect hearts. The medications to stabilize them. The kindness of all our nurses. Can you believe I could actually be growing as a person and happy? I wouldn’t have believed it while I was sitting in the waiting room those 6 hours praying that God would spare our angel. I prayed that the lord wouldn’t bless me with a Down syndrome daughter, and I thank him everyday for ignoring me. I prayed not to have to watch my baby go through this pain, but her heart was worse then they believed, and it’s fixed. It’s a blessing she’s through it and she will no longer have to be a heart patient. I can’t wait to go home and enjoy my life with her. I want to keep relishing the joy she brings into our home. This week I just found out I’m so much stronger then I ever believed. I’m still going to be praying I’m done blooming, just at least for a little while. I can say right now that I made it!
PS sorry for the typos, iPhones are hard to type on.
Congratulations on your book Kelle, it was inspiring and lovely to read.
8 months ago we adopted a little boy who has Ds, so my story is a letter to his biological mother, as I think of her often… (we have never met)
I think of you often, especially when he is sleeping. When I cover him in the blanket you bought for him I feel the hope, excitement and love you had for him, but I also feel the shock and grief that hit you when you discovered he had Down syndrome. I know that feeling too as my only daughter surprised me at her birth with an extra chromosome. I know what it feels like, to be hit by a freight train, pick yourself up only to be hit again !! Thats how I felt the moment I was told, but I had family and friends to gather me up and help keep me going forward. What must you have had, being in a new country, no family to support you, did you have any friends to help you?
I have grown up in a culture where disability is not seen as a death sentence, where people with ‘different abilities’ are now seen to have hope and a future. I know the culture you come from is different. It must have been so hard for you to make the decision to let go of your son, to send him off into the world on his own. How your heart must have broken. I know you had much grief about this, I know how scared you must have felt, but I cannot imagine the pain you must still carry.
But now, all you need to know is that he is just fine, in fact he is more than fine, he is blooming! He has found two parents who are fierce advocates for people with different abilities. He has a sister who is just like him and loves him to bits. He has found a community that has welcomed and accepted him with open arms and he lives in a beautiful place, with plenty of fresh air, abundant food and peace. He is growing up supported by people who know he has the potential to achieve many things. He will surf, swim, ride a bike and use an iPad, and be very loved.
So this Mothers Day I offer you a gift, a gift of peace of mind and heart. Please know that he is more than OK, he is blooming. You do not need to feel guilt or pain. He is just fine, and I hope you are too.
I remember the day that I found out my sister could not have children. I was shocked and yet I was only in middle school, but for me that was the worst thing ever – I wanted to me a mommy since my earliest memory! My sister is 6 years older than me and so when I was in my early 20’s she met “the one”. I remember thinking that I never wanted her inability to have children keep her from the husband of her dreams! I think it was Christmas eve and we were doing our usually family event and I took my sister aside and told her that I wanted to donate my eggs to her and her “future” husband. That moment was life changing.
At 29 years old we started the process. I did all the necessary testing and appointments and when the time came I did all the injections. My now soon to be husband was very supportive and very understanding. We were going to be married right after the extraction and would try for our own child as soon as we were allowed too! The process of donating eggs was intense. I felt to much pressure to do it right and to not mess up! The night of the final injection, the one that tells the ovaries to drop, I didn’t quite get all the injection in because I was shaking so bad! I worried ALL night that I had messed it up! The extraction took place and they got 16 beautiful eggs :). They put my brother-in-laws sperm with the eggs and we waited.
I think I forgot to mention that my sister could NOT carry the child either. They placed 3 lovely embryos into the surrogate mother and we waited again! I so wanted it to work the first time. I wanted my sister to ba a mom. To have a child that had her family DNA.
The day finally came – PREGNANT! It worked! 9 lllooonngg months later my beautiful niece was born! She and my daughter are 5 months apart! They don’t know it yet, but they are the most special cousins! They are now 7 years old and my son is 3. They are half siblings and I can not wait for the time to tell them.
I have helped to creat a life for someone else and I don’t know that there could be anything more rewarding. Not to toot my own horn, but I am proud of what I did every single day!
Thank you Kelle for the chance to share, I don’t often talk about it and it goes unnoticed by many! Love you!
I forgot to leave my name
Erin Leonard
Mother of 2 , Step-Mom of 2 and Special Aunt to one 🙂
At 16 months old, I was diagnosed with Cystinosis; a rare, progressive illness that has no cure. It occurs about 1 in every 200,000 live births. My parents were told I would not live to see my 10th birthday. The only treatment is a drug called Cystagon that must be taken every 6 hours. The side effects are brutal and similar to those of chemotherapy. Eye drops must be administered every hour I am awake, to prevent blindness from the cystine crystal buildup. When I was 11, I had a kidney transplant with my incredible mother as my donor. Two years ago, I gave birth to a living miracle to join us on this journey. There are only about 10 other women in the world who have Cystinosis and have become mothers. I celebrate the impossible every single day. That at 28, I have already lived three times as long as predicted. My transplanted kidney has defied the odds, surviving dangerous viruses, ceasing anti-rejection medication that one is supposed to take for life, and an extremely high risk pregnancy. In these stages of my health adventures, I am facing the challenges of muscle wasting associated with the disease; the muscles in my hand have begun to deteriorate and I have started to have trouble swallowing. I soak up the minutes with my daughter, knowing how blessed we both are to inhabit the earth together at the same time. I catch myself crying tears of gratitude over the love of a man who lifts me up and encourages me to fight like a warrior. I’m thankful with every cell in my being for the precious, soul awakening knowledge that indeed, my days are limited. Putting a spin on a quote from the movie ‘We Bought A Zoo’, “our happy is too loud”.
Tahnie
http://ahappygirl.com
Hi there, Kelle!
I don’t know if I’ve missed the deadline but it doesn’t matter. I just wanted you to know that I stumbled onto your blog about 2 weeks ago from an add for your book on the sidebar of another blog. I haven’t read the book yet but instead went back to Nella’s birth story and haven’t been able to stop reading since.
It’s been inspiring to say the least.
We all have a story or two–or more. And often our stories blend into one another, one crisis leading to another.
My story is long but in a nutshell, my story is a discovery of strength– growing with each obstacle I’ve stumbled over, around and through and I have had so many that I will probably write a book too someday.
But the biggest (and most painful)growth has taken place in the last few years. In the past 5 yrs I have had to watch and be patient as my oldest children from my first marriage become more and more selfish and self destructive due to drug abuse and other vices that distort reality and delay development in every way for them. Even in the face of all the blessings and tender mercies they have received from God and my husband– their adoptive father of 16 yrs, they continue down this path that their biological father took. The same path that caused him to abandon them and broke their hearts when they were just tiny. It baffles the mind and implodes the heart to see your own beautiful children, so full of potential, turn into such unrecognizable beings. They literally have become people I don’t even recognize anymore. The lowest point came a few yrs back, when I was driving down the road about 2 miles from home and saw a seemingly homeless bum of a guy walking down the road in the freezing drizzle of CT in winter. He was so bone skinny his pants were falling off. As I got closer I recognized him, he was my son. I had not seen my son in a few months. I knew he had been homeless but not heard from him in a while. I slowed down to ask if he needed a ride. He said no, that he was almost to his friends house, but thanks anyway.
It was at that point that I decided to not pity him anymore but just love him. To see him through the eyes of God and to be happy to see him every time I see him and be kind as far as I can.
I do not enable, I love.
I lift when I can and accept that my work will never, ever be done. I am a parent– I signed up forever. Today, he is healing as is my other son with his issues.
I have found a separate peace, aside from their issues that, I think, nourishes them in a way I cannot explain in words. But a few yrs back during another difficult time, I came across a great quote that says, “It will all be ok in the end. If it’s not ok, it’s not the end. ” I choose to believe that. Some do not.
But I believe it has helped me find peace and faith and hope for the future. I love my life and show my children that life is worth living and loving by being happy. That love truly conquers all. I think it has made all the difference. I see this same grateful attitude in your blog and it helps lift my burdens when I’m tired and weak. THANK YOU!!– for being the beautiful ray of sunshine that you are, reminding me to live well and have fun! It’s not the end!
Your new fan, Sue
P.S. You have inspired me to start a blog myself! My husband has been nagging me to start one forever, I just lacked confidence. So, thanks once more
for the inspiration! http://toomomlovepoop.blogspot.com/
Here is a recent account of my story…http://soulrefill.blogspot.com/2012/05/oh-to-have-friend-like-this.html
Thanks for helping to inspire conversations like I described on my blog….
On a Sunday in September we found out I was pregnant, after 2 years of trying. On Monday which happened to be our second wedding anniversary my husband lost his job. At 20 weeks I was referred to a high risk doctor for what my OB told me was just to use their high tech ultrasound machine to get a good picture of her spine. I was told then that my sweet angel was measuring behind and I was on strict instructions to eat tons of calories to get my babe plump. 2 weeks later I went back to the high risk doctor for a follow up and was immediately pulled from my job as a dental assistant and put on bed rest at 29 weeks. It was at that appointment they threw out the term “trisomy 18” When I say it rocked my world…It rocked it. I had an amnio the same day and waited 4 long days for the results. No matter what the diagnosis my daughter was mine and we would fight hard for her. But the overwhelming feeling that she may not make it to birth was terrible. On Tuesday I got the results that she was fine, the genetic testing was perfect. But what we still didnt know was why was my baby so little. I had two doctor appointments a week and weekly ultrasounds to be sure she was still growing, even if just a little. At 37.1 weeks on Friday May 13th, my OB made the decision to schedule an induction on May 16th (the following Monday)He sent me for another amnio just to be sure her lungs were going to be ok. They took me to a separate room to be monitored after the amnio (I had to go to this appointment alone) The doctor came in and said “well, we are sending you to the hospital right now, there was maconium, it is our sign that she is in stress.” And it just so happened that my cell service was not working for anyone with Verizon in the area. So I had no way to tell my husband, mom anyone. I sent someone who had bbm a message for them to call my mom and have her meet me at the hospital (but bc she has mothers intuition she was already on her way) and call Jake. I was induced but would not dilate past 2 after 23 hours of labor I spiked a fever, Lillian’s heart rate went sky high and they decided to do a c-section. My daughter was born perfectly healthy, just tiny. We came home to the possibility of loosing our home. I can honestly say my sweet little family all stuck together, we saved our house and we do not take a single day with our daughter for granted, it took way too much to get her here to ignore the beauty in everyday we have with her. I can say we survived a tough year and we are stronger than ever!
As an educator by trade and a mother by nature, I have always believed children to be the force that drives me…to be better, to do better, to inspire positive change for the better. It is for this reason I feel compelled to share my story. While teaching in my art room, we were swarmed by masses; twirling, spinning masses of termites. A true infestation, as they say. Laws were broken–state laws, federal laws, and laws of human conscience. Our little art room at the far end corner of campus would be forever changed from a creative, inspirational place where every individual was encouraged to express themselves…where differences were embraced and celebrated…where mistakes turned into masterpieces; to a toxic, life-threatening nightmare. The decision makers chose to drench my classroom, repeatedly, with a discontinued organophosphate pesticide. It was discontinued and illegal to have on school grounds, prohibited for indoor use as of 2002 because of its detrimental health effects…especially to children. This occured in 2005, its last year to get the “end use” product through the channels of trade. My health rapidly deteriorated. Confusion, frustration, fear, and anger all eventually transformed to desire, passion, and determination to take this as an opportunity for personal growth; to educate myself so that I could in turn educate others, in order to facilitate positive change. As my physical body continues to strive for wellness, my spirit continues to hold on to the hope that someday the whispers will turn into open communication…the pointing will turn into embraces, and the “freak” title will turn into just a mom who was passionate about the well-being of her babies…all of our babies, and the rights they have to a healthy learning environment.
–Melissa Jeffries
Kelle – your work is a great inspiration. Thank you for all you do.
Here is what I have to share.
Beauty in the unexpected? I now understand what that means.
This past year, we lost our life’s savings on a sour investment – kissing our dreams of home and business ownership goodbye. Then, my husband was laid off and in his job search, we moved twice, to entirely new communities, in an eight month period.
Those things were heartbreaking. But hardest of all was learning that our sweet little girl, our third child, has Cystic Fibrosis. CF is a rare, life-threatening genetic condition affecting the lungs and digestive system.
As the doctor kindly, sorrowfully broke this news to us, I felt the ground shift – all I knew about my world changing. We were in anguish, mourning the loss of ‘regular’, fearing for the future, grappling with the deluge of medical jargon that comes with joining the ‘sick child’ club. I felt lost, as if we had stumbled over a cliff and were falling blind. It was devastating and awful.
But there, in the unexpected, I found beauty. A thousand unseen hands reached out to uplift our family in our time of need. Love I never thought we deserved or needed, humbling in its abundance.
Community. Grace.
Somehow, in the raw pain of those weeks, I came to know, deep in my bones, a truth I did not anticipate: that still, even still, we have so much to be grateful for. So many others in this world have heavier burdens to bear.
Gratitude. Humility.
I realized, having always viewed parents of children with health issues as ‘different’ from myself, that we are the same.
Empathy. Compassion.
And despite my certainty that this would crush me, I am stronger having been through it.
Resilience. Confidence.
And my daughter’s face – sweet sunshine, nothing else. Blooming? Unexpectedly… yes.
Sarah
Shortly after we were married my husband and I were crushed to find out we had a 0% chance of conceiving naturally. Like most couples we never expected infertility to be a part of our lives. But, infertility has turned out to be the greatest experience in finding beauty in the unexpected.
Infertility lead us to adoption and it has been the greatest gift, but the process is not without loss and grief. Tears from parents longing for a child and tears from a birthmothers broken heart. Grieving the experience of pregnancy and the loss of what we had originally hoped and dreamed.
The journey has taught us so much about love and strength. It has brought us closer together, opened our hearts, and we’ve learned to fight to reach our dreams. We have met amazing people along the way, our family is intertwined with another in such an amazing way, our hearts have been mended, our dreams fulfilled.
In a perfect world maybe infertility wouldn’t exist and we would have those original hopes and dreams. Would I choose to go there now? No, because in that perfect world I wouldn’t have my perfect daughter.
Rachel
http://www.sillynessabounds.blogspot.com/
Nearly four years ago I gave birth to identical twin boys. Five months after their birth I had to go back to work. For two and a half years I left my beloved boys, tears in my eyes, so I could support our family while my husband finished his teaching degree. He graduated and began applying for jobs, sure that his degree and determination would land him a permanent position.
We had no such luck and I headed back for a third year. I soon found out I was pregnant again. The agony of working, knowing that I may have to leave yet another baby in the care of someone else was heartbreaking. And so in April, eight months pregnant and desperate for my husband to find work, I accompanied him to an Alaska job fair. There he met & interviewed for a position in the Lower Yukon School District. The job was in Marshall, Alaska, a rural village 400 miles west of Anchorage and 100 miles inland from the Bering Sea. With a population of 350 native Yupik citizens, there are no roads in or out of Marshall. Anything that comes to Marshall does so by bush plane.
I never imagined that a teaching job in bush Alaska would be the answer to my prayers, yet that is exactly what it has been. Through this unexpected journey to the Yukon, I have learned that to achieve your dreams, you must be willing to sacrifice. It is worth every sacrifice—not having a Target, a park, or a car at my disposal—to be home with these boys. I have clung to the quote you introduced me to so very long ago,
“Tell me, what is it you plan to do with your one wild and precious life?” Mary Oliver
-Shelly Cunningham
To read more of our journey visit:
http://www.loganandjack.blogspot.com
(rcunningham18@hotmail.com)
With Beanie’s baby pictures in hand, I started cutting. Cutting around the perfect outline of a perfect baby’s body. As I take scissors to paper and trace around our first born’s body I wonder how this will turn out. This wasn’t an art project or scrap-booking fun, this was practical. I needed to have a visual, some preparation. Then in what seemed like something only a deranged person would do I cut off all the limbs one by one. Who would mutilate a picture of their own child? It’s not something any mother would do willingly. Consulting the notes from my ultrasound appointment, I reassemble each limb in a best-effort attempt to create an image of what our unborn baby’s body will look like. There is however, one limb that doesn’t go back on. The end result is sobering and my heart breaks all over again.
I wrote that a little over 2 years ago shortly after we learned that our unborn baby would be born with limb differences on all four limbs. Since that time I have learned so much, but one of the main lessons is this: I don’t love my children for how cute they are, how clever, funny or smart they are. I don’t love them for what they do or don’t do for me, how obedient or talented they are. I love them because they’re mine. They were meant for my family, regardless of ability or disability. In the words of another mom, all they had to do was show up.
In an effort to share this message of love, I started a special needs spotlight on my blog every Friday. The situations, conditions, illnesses are all different…but the love is the same and it is always there.
With Beanie’s baby pictures in hand, I started cutting. Cutting around the perfect outline of a perfect baby’s body. As I take scissors to paper and trace around our first born’s body I wonder how this will turn out. This wasn’t an art project or scrap-booking fun, this was practical. I needed to have a visual, some preparation. Then in what seemed like something only a deranged person would do I cut off all the limbs one by one. Who would mutilate a picture of their own child? It’s not something any mother would do willingly. Consulting the notes from my ultrasound appointment, I reassemble each limb in a best-effort attempt to create an image of what our unborn baby’s body will look like. There is however, one limb that doesn’t go back on. The end result is sobering and my heart breaks all over again.
I wrote that a little over 2 years ago shortly after we learned that our unborn baby would be born with limb differences on all four limbs. Since that time I have learned so much, but one of the main lessons is this: I don’t love my children for how cute they are, how clever, funny or smart they are. I don’t love them for what they do or don’t do for me, how obedient or talented they are. I love them because they’re mine. They were meant for my family, regardless of ability or disability. In the words of another mom, all they had to do was show up.
In an effort to share this message of love, I started a special needs spotlight on my blog every Friday. The situations, conditions, illnesses are all different…but the love is the same and it is always there.
My husband is 31 and I am 27. We have been married for almost four years and have two precious children–a 3 year old boy and a 9 month old girl. My husband has always been perfectly healthy as far as we knew, until an ER visit on April 1st where we discovered that he had a bleed on his brain. He was diagnosed with stage four (metastatic) melanoma. We reeled from the news…how could it be possible? We cried. We didn’t understand. Finally, after talking to another melanoma survivor, we realized that we would not make it through this if we did not choose to pursue life and joy.
As I type this, I’m sitting in my husband’s ICU room where he is recovering from his second brain surgery. We miss our babies terribly and can’t wait to get back to them. We have a long road ahead of us and though some days I just want my old life back, this is who we are now…and we will never, ever take each other or our children for granted again. Life is a gift, and God is still good.
All of the comments are amazing and inspiring and everything in between. Thank you!
First of all Thank you – I don’t know that I will ever be able to thank you enough. Your blog was the oxygen for me in those early days when I felt I couldn’t breathe.
I too had a surprise on April 7, 2011. My third daughter Emily was born with Down Syndrome. The moment she came into this world I knew my life was forever changed. You know how the story goes so I won’t focus on all that followed as we learned to find beauty in the unexpected. During those early days of paralyzing grief as I was learning to love Emily, I kept telling myself that I was going to do something great because of Emily. I was not going to let her birth and diagnosis define me.
It was a cold and rainy June day here in Wisconsin. I said to my husband, “I wish Nikki would come over and help us get Emily’s room together, it is time to move her into her room”. 5 minutes later, the phone rang, and it was Nikki. She came over and we spent the next five hours organizing and decorating Emily’s room with all of the things I had in my home to make it beautiful. It was the best feeling that night to rock Emily in her chair, in her room and put her to bed in her crib for the first time. I realized that it wasn’t just because the room looked better than the Pottery Barn Kids catalog(which it did), but it was the amazing feeling that I was finally accepting Emily into our family for who she was, that I was allowing myself to love her in spite of all of the pain and fear I felt because of her diagnosis.
Fast forward – I thought to myself, Nikki and I are pretty good at this, how can we do this for others who are hurting, who are needing help? ironically, we had our perfect first client. This is where the story gets even more interesting.
3 weeks after my Emily was born, PJ came into this world with Down Syndrome too. My oldest daughter Lily was 1 of 9 kids in her K-4 class. Her classmate Ben’s mom happened to be pregnant at the same time as me. We got to know each other that year as we shared the experience of our pregnancy. Ben’s mom Lisa was so torn when she received the email hearing that Emily was born with Down Syndrome. She knew it would be difficult for me as she entered the final stages of her pregnancy. Only 3 weeks passed, than I got the email – Lisa emailed me alone – her baby was born April 25th, and was rushed to Children’s Hospital for emergency surgery as he was born with an imperfect anus, they were testing him for Down Syndrome. They received the results while PJ was in surgery for an emergency colostomy, he too had Down Syndrome. Oh were we the talk of our Catholic School!!! , What are the chances that 2 students in the K4 class would have mom’s who have children with Down Syndrome within 3 weeks of each other? (Lisa’s Blog: patrickandhisbrothers.wordpress.com). She has been an amazing support as we are taking this journey together.
Nikki and I decided that Lisa needed to be our first client. As we helped organize, and re design PJ’s room for Lisa, we decided that there are so many more women and families out there we could help.
My story is that I decided to start a business – to take my pain and help others. We started “Everything Fitz Home Organization and Re Design” (everythingfitzorganization.blogspot.com). Our mission is to help people “see their spaces, and things differently”. We are organizers, and home re designers. We have a greater plan for our business. We plan to go to our local Children’s Hospital and find other mothers, and families who are dealing with life changing diagnosis and offer our services for free. We haven’t been able to do this yet as we both have had a lot going on in this past year knowing our first priorities are our families. But, we plan to do more, to be more, to give back.
My story is that I have been able to find beauty in the unexpected and I will use that pain to fuel my journey of helping others, and transforming someone else’s life.
I emailed this as well because of course I had to share photos…. Sorry!
I am nearly half way through Bloom. I have read some portions two to three times before I have been able to move forward, highlighting more and more going back and crying through sections of it all over again.
I am the sister of a child with Down syndrome. I have read the pain you felt for Lainey through the starting days of Nella’s life and mourning the loss of the sister you had promised her. I wish I were able to tell you in words how much my sister has changed my life, I wish I were somehow there that day to describe the insurmountable amount of joy she has brought to every day living. How life without her just wouldn’t be life and how much she has taught me by just being present. My sister Becky is now is 26, for 26 years I have been given a gift that nobody else I know has had the opportunity to have. God chooses the family to give these precious babies to very carefully, without Becky my life would never be complete without her my heart would never be so full. She has been the best sister and friend one person could ask for, her smile and laugh makes my heart dance, her soft kisses and silly dancing can turn any “hard and difficult” day into a “thank God I am alive” kind of day. I have been awarded the opportunity to feel a love for someone that literally makes my heart overflow and sometimes I think I love her so much my heart could literally implode. We have had this bond since the day I was able to hold her close to me. Although we were awarded our own rooms as children I never wanted to be far from her at night so we shared a bed for close to 14 years.
Becky was born with heart defects, a list to long to mention, she has been through more than any one person I know and yet every day she smiles, every day she is happy and every day she is here is another day I am given the gift of having the best sister in this great universe. She is a reminder to love simple moments, to cherish the days you have and to always love unconditionally and now she is showing my children the same. As her health begins to deteriorate and I watch her loose the ability to do the simple things she loves I am reminded that our time is short and to also thank God for her and for choosing me to be her big sister, for allowing her to love me and teach me everything that she has.
Thank you Kelle for sharing your life with us and for allowing others to bare witness to how beautiful these children are and how much it changes our lives for the better.
Melissa Kelso
Well…just wrote a whole deal…that somehow got deleted when I tried to save it. I’m taking it as a sign that it wasn’t meant to be…:(
I didn’t meet my son, John Paul, until eight hours after he was born. When I held him, he reached up his tiny hand and touched my cheek as I said, “I love you.” In that moment, I felt complete peace and wondered: Could beauty exists in all things, even in my body that I’d discovered was cancerous at 32 weeks pregnant and even in a baby fighting for each breath?
Over a year later, John Paul and I were headed back to the hospital. Except this time, John Paul was in pain-his chin and body covered in raw, red, blisters that formed after he’d accidently poured a hot cup of coffee on himself. In his short life, my son had now been witness to so much pain and suffering-a five week NICU stay, his mother enduring six months of chemo and multiple tests, biopsies, and surgeries, and now painful burns.
I couldn’t stop the tears from streaming down my face even after we were in the ER for hours, JP’s pain had been controlled, and I’d been assured he was going to heal just fine. I was no longer just crying for my son’s pain, but for everything, and it seemed as if despair was about to win. But just then, as I picked up my boy, he reached up his hand and touched my cheek.
To an outsider, it was just an ordinary moment in an ordinary day. But to me, it was sacred. And I realized that yes, this relationship called motherhood and the past year and a half have been nothing like I expected them to be. But, oh, has there been beauty in all the love that’s been shared! It was only a matter of opening up my eyes to see it.
Thank you for letting me share my story and for sharing yours. You inspire me every time I read your words.
-Allison
http://www.be-not-afraid.org
I must be the type of flower that loses its seed, withers and dies, but starts to grow again in a new garden. I’ve bloomed in so many gardens. When I bloomed in the past, it was because of my mother. She was my root system. She selflessly nurtured me until her death on February 1st of this year. My childhood was idyllic because of her. She was my sounding board when my firstborn son was diagnosed with ADHD and Anxiety. She was a much-needed second set of hands when my second son was born. She was my complete rock when my youngest son was born with Down syndrome. She sacrificed blood, sweat, and tears when he was diagnosed with Autism a few years later. She rose to the challenge when my hopeless marriage unraveled. She was a second mother to my children. All the while, teaching Kindergarten and influencing so many young hearts and their families. I have lost my identity: I cannot be the same person because she was so much a part of me. This is my first Mother’s Day without her. I am a tiny seed in another foreign garden. I do choose to have faith she strengthened my core so I could survive and thrive in her absence. Happy Mother’s Day, Mom, I love you. I will again bloom!
Lisa S. Prey
In honor of my Mom, Sue Stock
“Bengee”
I was introduced to your blog from a friend just a few months ago. She said ” this is your sister from another mister, for real!”
Yellow loving.
“enjoying the small things.. ”
” loving the little things.”
Picture taking, taking the good out of the bad..
our music picks =)
Now, really reading your blog and truly falling in love with your story and your family..
You have inspired me in more ways then one.
Through my childhood and into my adulthood.. my life hasn’t exactly been easy. But I learned at a very young age that its YOU WHO IS IN CHARGE. Of your life, your happiness. How you respond to the “unexpected.” Finding happiness while weaving in and out of life changing happenings.
Finding “happy” is a constant learning process.
“loving the little things!”
Its the “little things” that always end up being the bigger things.. and usually people don’t figure that out until they’re later in life and looking back on their days wishing ” I should-a’hs and if I’d known,
I would-ah!”
One of my many promises I made to myself on the day my Mom died was ..
::THAT WOULD NEVER BE ME. ::
I will never look back and think
” I wish I would have!”
Embracing every moment.
The good ones.
The bad ones.
The in-between ones.
Each one is a gift.
Loving your life and the people in it.
Finding your center and being the best you can be.
Kelle.. you have been placed right where you belong sister! Inspiring. Loving. Being a true example of what happy is about. Even in life’s hardest moments.
Its not who we are in our best moments. Its who we are in our worse moments.
Thats what I believe, at least..
Finding your yellow!
For me.. teal compliments it so well. And seeing the two together always makes me smile =)
xoxo
-http://www.sheenawilkins.com/
Thank you.
My story has been in the making for a little less than 3 years now. It began in August 2009, when my husband and I were sitting on our couch – me 32 weeks pregnant and exhausted- when my water broke. I remember thinking “wow this is early”, but no big deal
So off we go to the hospital where they told us we would not be going home without a baby…..”ummmmm WHAT?!?!?” was all I could think – this was not part of my birth plan!
And then the tears and questions started – would he be ok? Would he have special needs? What would the future hold? How would I make it through this? Would I be strong enough? – I had a million of them over the next week while we waited everyday for him to come. I remember thinking how unfair this was – this was my first time, I wasn’t prepared for this, this was not how it was “supposed” to happen. He finally came on a Friday night – perfect and healthy, and the tears I no longer thought I had just flowed. They continued to flow as they took him away to the NICU after a brief, but life changing, cuddle.
We were in the NICU for 16 days, and I remember every day clearly. The unfairness of it all – we didn’t belong here – but also feeling so grateful that my son made it and was relatively healthy. I remember going home at night exhausted and crying because I couldn’t take my baby home to sleep besides me and to nurse from me. But from hard times come great things. It gave me an appreciation of life and my child I don’t think I would have known without going through that.
Flash forward to reading your blog and it gave me strength…. It fed my soul to know that even though our situations are different – someone else out there felt the same. Thank you Kelle for your words and voice at a time when I couldn’t find mine. You inspire me to enjoy life for what it is rather than what I think it should be, and I have found that the life I am given is much better than the one I could have planned for myself.
I’m still blooming but you can read our story here:
http://thisishappilyeverafter.blogspot.com/2012/05/do-you-believe-in-miracles.html
“Hello,” I said as I cautiously answered my cell phone, not recognizing the number on the caller ID. “Is this Samuel’s mom?” came the unfamiliar voice at the other end of the line. What came next brought my life to a complete and sudden standstill and changed the course of it forever.
That day, the light of my life, my 2-year-old, curly, red-headed boy had fallen into a canal just one day after celebrating his birthday. He was swept away in the swift current. It took 15 minutes and many first responders, firefighters, paramedics and highway patrolmen to find his cold and lifeless little body. The ambulance had raced passed me heading the other direction as I drove home from my older son’s soccer game. I had no idea it held the struggling soul of my tiny one.
I’ll never forget those two months we spent in the hospital as my son writhed in pain from the storming in his oxygen-deprived brain. The world went on around us and I watched it like I was completely detached. Nothing mattered to me but helping my son and, yet, there was nothing I could do but watch his brain twist and contort his body. I thought those months would kill him. What he was enduring was unthinkable. I prayed for healing. I prayed for death. I prayed for some release from the pain for all of us. It was the deepest and darkest hole I’ve ever known.
In just 5 weeks, it will have been 7 years since that day. The little boy I knew is gone and the mourning for him has been long and difficult. But the sweet boy who has taken his place is a gift to all of us. He no longer talks, walks or even eats by mouth. But his smile is infectious and his laughter is the sound of angels. I thought for so long that I needed to “fix” him…to make him like he used to be. But I have come to see that he is far too perfect in his current state to need any sort of readjustment. And so, we love him and he loves us and we give him opportunities to become whoever he will become and we let what may come.
Life throws us challenges…none of which we ask for or would ever take upon ourselves…but in the end, I see the world differently, in brighter colors, with more appreciation and much more love because of the things we have endured. My son is an incredible light in my life and I can never, ever be grateful enough for all that he has given me.
Teresa
http://www.samuelsmiracle.com
By Eliza, Colorado mom at myupside.wordpress.com
The name Raphael means “God heals.”
My baby picked that name for himself. In doing so, together, we flourished.
My second child came at midnight in the same room I had given birth in 23 months earlier. But this time, the instant my son arrived, my world shifted.
My newborn lay limp across my thighs, a greenish-brown sledge covering him. He was whisked away before I could grasp the chaos around us. He had been swimming in his own stool in utero and aspirated thick meconium on the way out.
We watched a helicopter lift him away before I could hold him. We followed him to Children’s Hospital NICU immediately.
When I gave birth to my first son, I felt the most intense love of my life. This time I feel the deepest void imaginable.
Questions remained unanswered. We learned many medical terms but not what was wrong with our baby. There was nowhere left on his body for another line or drain tube to go.
We’d had no chance to bond with our boy. A lab was running genetic tests, but we didn’t know the extent of his potential disability.
“He is a very sick boy,” doctors said. They were “running out of options.”
Doctors needed our permission to attempt a life-saving treatment. The risks were grave.
We consented.
We fully choose what had been unexpected.
First, our child needed to meet his brother and to have a name – should the unthinkable happen.
“Raphael” was on our short list. When we looked up its meaning, the choice was obvious.
I went to my infant’s bedside. I called his name. I asked him to stay.
The next day his health turned around; he didn’t need that treatment after all.
Once again, my world shifted. This time toward beauty, toward life.
You can read more about those emotional twins, pain and joy, and about my treasured boys at http://myupside.wordpress.com.
Upon the birth of our third son, most people thought we had had just “another boy”. How wrong they were. My third son Nathan’s birth was quiet and uneventful to many, but “another boy” he was not. He was a beautiful, petite- featured little angel. Easy going, happy, and bearing an extra chromosome.
While we grieved the baby we had expected, we fell deeply in love with the beauty of our precious bundle. He amazed us daily with his strength, achieving milestones on a somewhat “normal” timeline.
At 18 months of age, he was walking, talking, and amazing everyone with his development and bright personality.
On a rainy Sunday in March 2006, Nathan fought his nap as though he knew that his world was about to change. And change it did.
A massive stroke and damage to 40% of Nathan’s brain warranted a flight to a children’s hospital to undergo emergency surgery. He emerged from surgery in a coma and on life support with not much hope. Again, we grieved the boy we thought we had and prayed for a miracle.
And a miracle was what we got. Nathan fought to breathe, to eat, to regain his vision. He perservered and eventually regained these skills and also learned to sit and speak once again. But most importantly, he opened our eyes to the simple things in life and his bright, beaming smile and deep laugh stole the hearts of everyone around him.
After 16 1/2 months of rehab and multiple hospitalizations, sweet Nate was called home. But he left us while watching his Wiggles and eating his french fries….laughing.
Again, we grieve him, but his smiling spirit shines through the pain. For we are left with the honor and privilege of continuing to be Nate’s voice. We have spread awareness, opened a Down syndrome awareness center, and continue to be touched by his spirit. Although Nathan has left this Earth, his spirit continues to Bloom….
Samuel Joseph was born in November, 2008 SIX minutes after arriving to the hospital. That is a story in itself (the hospital sent us home a few hours earlier that night & Sam nearly arrived in the car). Because of the quick delivery, I asked right away “is he okay?” & was told “yes” in a very somber tone. They handed him to me & I knew instantly that he had Down Syndrome. Our eyes locked & I felt this overwhelming peace. It was as though he was telling me not to worry…we’ll be okay. I truly felt okay about it all until sometime the next day when I was reading up on Down Syndrome. When I read the abortion rate for those who find out is like 90%, I had a little panic attack. What did they know that I didn’t?
The night before we were to be discharged, Sam’s oxygen dipped so low that he turned blue. They were worried he had an infection because of not receiving the antibiotic for Group B strep (due to not getting to the hospital on time). I was told there was a chance he might not make it if that were the case. We were very lucky that he did not have an infection, but still had to spend 2 weeks in the hospital. I was so thankful to take my son home that the DS seemed irrelevant.
Sam is now 3 and I cannot imagine life without him. He brings so much joy to our family & the magic between he & his 5 year old sister is beyond amazing.
Sam reminds me each day that life is really simple. We all just want to love & be loved and to be accepted for who we are.
I have much to be thankful for this Mother’s Day.
Sam’s birth story is finally written.
Sara Ward
after reading through many of the stories, i told myself i wasn’t going to share, mine seems to pale in comparison.
but i realized, {and so came back} how can “hards” be compared. though different from each other still.. it is ours! our hard. our life. our story. and the power to make it through those times often comes from others NOT being silent, but sharing their journey with the rest of us. so.. this is my “bloom story.”
this past year my husband and i went through the toughest time we’ve faced yet in our 15 years of marriage. it came to a point where we said to each other something we never thought we’d say – – “i think we should get a divorce…”
and since i’m so bad at keeping things concise, and there’s no way i could share the depth of our story in 300 words {i’m sure i’m already there now} 😉 i’ll try to sum up and simply say~ there are battles that are fought and won. that seem to have beginnings and ends. a bow we can neatly tie around them as finished. and everyone applaud at the outcome. and sometimes.. sometimes they are ongoing. and getting through each day. that! is the victory.
and that is where we are. learning each and every day to continue to fight for one another. to be intentional about keeping our love alive. to not give up hope, that though life hasn’t gone as we planned, it certainly doesn’t mean we can’t make a NEW COURSE!
amber
http://grace-to-be.xanga.com/
Hi Kelle,
I’m looking forward to reading all these comment stories!! I know I’m going to be inspired, and I’m getting the tissues ready because I bet some will make me tear up. And I know I probably missed the cut-off time for this, and I just cannot bring myself to sit and count the words so I’m pretty darn sure my story is longer than the required 300 words… but I thought I’d share it anyway 🙂
Here’s my “bloom” story:
I had a daughter who was once very able-bodied and perfectly healthy in every way. But a few days after her 4th birthday, she was forever changed. She suffered a traumatic brain injury in a car accident and spent three months in the hospital. When she finally came home, she was paralyzed on the right side of her body, her eyes pointed in different directions, and she could no longer talk. She would often stare off into space with a vacant look in her eyes. Her personality had been dulled. I spent many nights crying as I watched her sleep, wondering where was the little girl that I once knew? It was like her entire hard-drive had been wiped clean away, and I missed her so much!
The next three years were a blur. Throwing myself into her therapy, I became obsessed with trying to turn her back into the daughter I remembered. I convinced myself that if I worked hard enough with her, she would come back to me. But no matter how many improvements she made, she was still not the same. I was so, so sad…all the time.
Then one day I read a quote that changed everything for me:
“Life is a one-way street.
No matter how many detours you take,
None of them leads back.
And once you know and accept that,
Life becomes much simpler.
Because then you know you must do the best you can
With what you have
And what you are
And what you have become.”
I suddenly realized that I had become the mother of a child with disabilities, and no matter how hard I worked with her, the old “perfect” her was never coming back. And as much as that reality hurt, I knew it was time to accept it. So from that day forward, I began to enjoy my daughter for who she is in the moment… instead of always comparing her to someone from the past. Life became happier for me after that, and it had nothing to do with any recovery she continued to make. Instead, it had everything to do with my attitude and how I chose to see my daughter. Instead of focusing on what she could no longer do, I started celebrating the things that she could do, and she surprised me by how much she could do! She continues to surprise and inspire me every single day. Her accident “bloomed” me into a better mother and a more patient and compassionate person. For that, I am thankful.
http://www.theyallcallmemom.com
I wish to add my story in this long row of intimate stories. to share resilience and to share that it is so really true that there is beauty in the unexpected!
From 2002 to 2005, we endured 7 miscarriages in the first trimester of pregnancy. We found hope is like blossom, it pops up after cold winters. finding the heartbeat leading to the birth of our son was overwhelming! such joy!
9 months later, I found myself pregnant again. Crying, saying: everything will change from now on.
It did.
our second precious child was born with long blond hair, the most beautiful face and Downsyndrome. she had open heart surgery with three months.
Nine pregnancies… two babies, only one healthy.
And yet, so happy. so loving, so desiring only ONE more.
We trusted, knowing we could do anything if the love is there.
After 17 weeks of being pregnant, already enjoying those small kicks, our baby died.
I gave birth to our third baby, healthy? but not alive.
we grieved and loved and held close to each other.
Desiring… believing that we had courage and love and resilience enough for yet one more pregnancy, feeling this would lead us to a completion.
Being pregnant, the weeks went by, strugling fearfully.
But it ended. I gave birth to another daughter and she is turning one this month.
our little girl with downsyndrome is attending primary school and is developig so well and is such a happy bright little girl, she is surrounded by a mom and dad and an older brother and babysister…
amidst the challenges, the grieve, the tears, we find such beautiful diamonds in life.
Kelle, I am from holland and haven’t read the book yet, I certainly will!
ps I did not intent to post anonymous, this is Miranda, mother of three-in-my-arms, from Holland.
one last thing,
I wrote one single post about acceptance. about ‘who is thirza and what is her syndrome’ on thirza.downsyndrome.com
Am I too late to post? I’m a little behind the curve. 🙂
I think I hesitate to write because it’s too easy to make myself the hero of the story. But my story isn’t really about me. It’s about the lessons God has taught me about trust and living the beauty of the present. It’s about the generosity of others. It’s my own version of the beauty of the unexpected.
My son, Corin, is 2. He was conceived via in vitro fertilization after a long and often very difficult infertility struggle. Through those years, I learned how important it was not to fixate on the missing pieces. God taught me to trust Him to care for us and to focus on how many blessings were already there, in front of me. My relationship with my husband grew, my faith grew, and ultimately, our gratitude overflowed at the gift of our precious son.
As our son grew, we began to talk about issues we knew we would eventually have to face again. Where did our family plan go from here? None of our other IVF embryos had survived to store for future use. The financial burden was a huge concern, since I had left my job to care full-time for our son. My husband brought up the idea of embryo adoption, which we had come across during earlier adoption research. I dismissed it as “too weird.” But the most unexpected route became the right one for us. As we looked into it a bit more, we realized it answered so many of our needs and concerns. The process was not always easy, but at every step I felt the confidence that we were on the path to the child God had chosen for our family.
We were eventually matched with a donor couple several states away. Like us, they had been through the IVF process. They had two beautiful children and two embryos remaining in storage, which they did not plan to use. They had made the difficult and incredibly generous decision to donate those embryos to a couple who needed them. We chose their profile from a dozen or so donors, and they approved the match. Their two embryos were transferred to my body, and one implanted.
This evening at 5 p.m., we have our 20-week ultrasound, where we will hopefully find out whether we are expecting a baby girl or baby boy. Either way, this child is another incredible gift. I communicate with our donor mom via email, and yesterday, Mother’s Day, it occurred to me how blessed my unborn child is to have two women who will have shaped his or her life. I will carry, birth and raise my child, but another amazing woman gave this child its biology and the chance at life as a precious member of our family.
Our unexpected story is still only just beginning to unfold, but I see its unique beauty, and I know that God has brought us so much more than we could have asked.
Hi Kelle,
I’m inspired by the book and also by your blog. You bring joy and positivity into my life with your words and I really enjoy reading them. My mother and I have had health issues for about 10 years together. She smoked through my childhood and developed severe COPD from it and I was diagnosed with MS and a rare form of arthritis. We were always close but made a stronger connection because we could relate to each other’s situations as bad as they were. We both suffered greatly but were there to be each other’s cheerleader when necessary. My mother is the most positive person I’ve ever met with good genuine things to say about each and every one of my children, my husband and me. She’s been our biggest fan club. Dealing with chronic terminal illness like we both have had to do is not easy but it sure helps when you have someone there to support you. Sadly, my support passed away on May 7th last week. My pain is immense but I know my mother is in a better place and no longer suffering. She was just so tired. We both worked from home running the accounting and taxes for our family run business. This has got to be the hardest thing I’ve ever dealt with. She was my best friend and comrade. Completing the work she did partially the day she collapsed and died has been heartwrenching. Seeing you overcome your pain gives me hope that I will also overcome this and become happy and positive again. My eyes look like yours did and I’m trying to overcome. My rock is gone physically but never in my heart. She will stick with me forever. I come to your blog each day hoping to see the adorable pictures of your precious girls. I have six children ranging in age from 24 to 7 with my youngest being a girl. My daughter always laughs when she and Lainey have the same clothes. We must shop at the same places (means we have good taste, huh? 😉 ) Thanks for being an inspiration to me to seek out the positive and overcome the negative. I am so grateful that I had my mother as long as I did and she instilled the great values and morals in me that I will have forever. Rest in peace Joyce Raab Swan. You were a true matriarch that held her dignity to the end. No one will ever replace you but I will try to be just like you in every way.
Hi, Kelle!
You know what is bloom for me? It’s a survival after the devastation. After someone just reaped your heart out of your chest and mutilated it. After pure evil came from the unexpected place and tiered your life apart. It took a lot of efforts and tears and love to come if not to peace but to acceptance of the terms : “We are, these parents that you feel so sorry about, when you see the news about yet another child being molested. We are them. It became our nighmare and reality. “ The bloom is to accept it and live through it and then start over.
http://southofbroad-natalia.blogspot.com/
If you get a chance, where didi you find nellas skirt?
frazierheidi@yahoo.com
You can know all about bloom from the post here. Good post
Cosmetic Surgery