On Down syndrome

The title of this post may surprise you. Because it surprises me. Because…I forget. The two words that felt so heavy months ago, like iron chains that shackled me and pulled me beneath waters that choked and suffocated me until I almost drowned. They’re gone, those shackles. I float happily now, light and free, aware of its presence in our lives but…well, just that. Aware.

This is what I wanted. As I was scraping away layers of who I was months ago, discovering our new meaning, rearranging things in our life and finding a place for the new term to live in our spaces, I hoped I’d end here. That life would take center stage and Down syndrome would move to the back like a stage assitant whose name appears in small print at the end of the credits. I searched the Internet for families that did it like I wanted to and put band-aids on my heart when I found them…familes that moved on and loved life–the ones that you’d never know “it” happened to them unless you dug a little deeper. Families that were not defined by it. And it happened on its own. We became that family, the one I wanted to be.

But every once and awhile, it appears. Last night as she was playing, grasping toys and waving them in front of her. And her movements were a little choppy, up and down, up and down, pounding her forearm to her chest like a hammer. And Brett looks up at me and says, “Is that normal? That choppy movement? Or is that Down syndrome?” And for one tiny little second, my mind starts spinning. Is it normal? Did Lainey do it? What if it’s not? And I want to Google it, but I don’t know what to search. And I don’t want to see what it says. And I laugh it off and go to bed but it’s 6:00 right now and I’d be lying if I didn’t say I woke up early and have let the bus hit me again. It could have been a light and easy hit, but no. I asked the driver to hit me hard. “Smack me real good so my body flings up in the air like a dummy and I hit the pavement hard on the way down,” I tell him. And he obeys.

See, I don’t usually think this way. In fact, I was commenting to a friend the other day that my acceptance of Down syndrome is much like her acceptance of having two boys. Like sometimes it will hit her for a moment that she never had a girl. And for one second it might be sad…that “I’ll never know what it’s like to have a girl” feeling…but then instantly comes this love for her boys and she smiles and moves on. The same argument could be made about only having girls and never knowing what it’s like to have a boy. And that’s just what it’s like for me. Mostly I don’t think about it. But sometimes, for one second it will hit me…”My daughter has Down syndrome,” and my throat will start to tighten and for one second–one tiny, tiny second–it hurts, but right before it closes to the point of robbing my oxygen, it opens back up–as quick as it closed–and I breathe. “Yeah? So what. She has Down sydrome.”

My friend might never know what it’s like to have a girl. I might never know what it’s like to have a boy. And I’ll never know what it’s like to have a Down-syndrome-less Nella. But there’s a lot of things we’ll never know. Every choice we make eliminates another. Random as it is, I’ll never know what it’s like to be married to an Asian man, an Australian man, a British man with a sexy Hugh Grant accent. I’ll never know what it’s like to get wasted on my 21st birthday. I’ll never know what it’s like to have triplets or to travel around the world before I get married. I’ll never know what’s like to be a natural blonde. And I’m not going to cry about any of it because there’s a million random things I’m never going to know, and everyone’s life is custom-made for them. And when I hear about moms who kiss their babies before running to their chemo appointments or kindergarteners who draw pictures of their daddy-less families and nonchalantly tell their teachers that their daddy’s in heaven…well, I’ll take my custom-made situation just as it is, thank you. Because it’s beautiful and I am grateful.

Photobucket

I am reminded that I had these same feelings with Lainey. That there were plenty of nights I woke up early like today, unable to sleep because my mind wandered over unexplained fevers or scabs that didn’t heal. I’ve been hit by the bus in non-special needs land too, and I guess that’s a comfort. And hell, maybe she grabbed toys and jerkily hammered them to her chest too. It’s okay, it really is. I just had to put it out there. Peel off the painful layer, type it out and put it to rest where it belongs.

Parenthood is hard and beautiful. Scary and rewarding. Sad and Happy. All at once. Last week my friend traveled to Texas to be with her best friend when she welcomed her baby early…just three-and-some pounds. It was scary…and although my friend doesn’t have babies yet, I had to sit back and smile at her account of it all after she kissed that baby goodbye and headed back home. Because she was smitten with the love of that little boy and what his family went through and being present to witness the transformation welcoming new life does to you. Especially when it’s a little bit scary. It rocks you to the core. Picks you up, smacks you down hard and then rebuilds you with all new parts. Loving littles is one of the greatest, most wonderful things that will ever happen to you. And the minute you welcome one into your life, you inherit a thicker skin…because the bus will hit you plenty of times to the point you’ll think you damn near died. But you don’t. You pick yourself off the ground, dust off your knees…and move on. Because beauty awaits. The beauty that fills in all the holes and rough spots.

So, I guess I didn’t feel that one coming. But it’s out. And yes, I do have these days.

On a lighter note, we’re off to Key West to engrave some sweet memories in our sweet littles’ minds…and don’t forget to check out how to pack The Perfect Picnic over at Babble.com

Comments

Leave a Comment
  1. Heather says:

    many hugs to you as you dust yourself off from the bus. my son is 8 and has autism and that bus still rolls to my stop every so often. Stupid bus.

  2. Hi, I just recently started following your blog.
    You have an amazing attitude and I love reading your posts. I have 2 boys and sometimes knowing that I will never know what it’s like to have a daughter makes me very sad, but like you said, I have 2 amazing little boys and they fill my heart and I’m blessed
    Your little girls are beautiful

  3. Anonymous says:

    Ahh the twists and turns of life. We never know what will happen next but “loving your littles” is so instant the moment they are born – an unexplainable feeling you can’t know until it happens to you.

    And can Nella get any more beautiful?

    Have a great trip to Key West – can’t want to hear about it!

    Sue

  4. I love how you put it: there are a million things you’ll never know. this is so true and i never thought of it that way. Life sure is what it is…and the examples you gave of fatherless families and medical illness really keep things in perspective. my daughter is now 15. We have accepted things,and as they get older and less small and less “cute” and more big and “different” compared to other kids,things get more complicated for sure. the bus never stops hitting me…but the bus hits moms of typical teens too and there are things i’ll never have to worry about with my Carlie: sex, drugs (other than anti-convulsants), broken hearts, breaking curfew…. hey everything has an upside:)
    Have fun in Key west!! I cannotWAIT to see the photos bc iknow as usual they will be brilliant!! Again, your posts have both touched and inspired me:)

  5. Mattanja says:

    She is just perfect! And thank you for sharing…

  6. Lovely post! Thanks for sharing! very raw & real.
    I have found other parents of kiddos with DS to be my greatest resource to those kind of questions: “is this typical? is this DS?” Those internet searches can be quite scary…especially in the beginning.

  7. Huge hugs in your moments of bus-hitting. But high-fives for being so strong! xo

  8. Hello
    I came over your blog when I was google…whaterver that was…(sorry for my Norwegian English 😉 and you capture my interest.
    First I think..ohh.. just a another happy Americana family…happy, pretty, and smiling family…cute children…and all is sooooo glad.
    Well, I read, I cry…and understand that I was wrong.Not that your aren’t happy, not pretty….but your life is not been that simple.

    It took me a while too see that your princess has Downs…she is soo adorable and cute.

    In my daily work I take care of people whit Downs. It gives me a big pleasure, and I has learn so much from them….learn about myself.:-)
    It is not easy to have i child whit Downs..A friend of my said that they will always had a child…there never will bee adult…he is always a child. A child on 5-10 years.

    Lucky wee has com a long way, too day they goo to work, party, lived like all other people….well, they do that here I live. They has there one flat..friends….go too school…..and you know..like every other young people.:-)

    I never forget your story about giving birth too your very special baby.:-) Thank you for sheering so much of your self. I think many people will find comfort in your story.

    I hope you can forgive my bad English…..
    Wish you a nice trip.

    Randi from Norway :-))

  9. This comment has been removed by the author.

  10. I’ve been reading each post of yours.
    Nella is so beautiful. I am enjoying seeing the progress she is making. Thank you for sharing such personal moments in your life with us. I know there will be good days and bad days for you – I am just so pleased you have a supportive family and a wonderful blog readership to help you through.

  11. I had never thought about the choices thing until you typed that! I have been feeling a little melancholy because we have 4 kids under the age of 6 and after my last one was born, I made the decision to have a tubal. But now she is 7 months old and I get a little sad thinking she is my last baby. But you are right, there are alot of things I will never experience and having 5 kids will be one of them. and that’s OK. thanks for putting things into perspective. you are a very strong woman!

  12. Anonymous says:

    kelle.
    I love my children with every fiber of my existence-they are adults now – but I have to tell you that I have awakened many many nights in total blown away anxiety gasping for breath worrying about their safety, what if’s and just about. everything else I could think of-many times I thought that I shouldn’t have been anyone’s mother-I loved them too much! But you get through and the rewards are many and your life is so complete-I still worry and I bet if you spoke with Poppa he would agree -the worries are many but the rewards are so worth it!!!!!

    I

  13. While I don’t have littles I can appreciate the reminder to be thankful for my own custom made situation as hard as it is right now :)

  14. I whole heartedly agree, parenthood is hard. It’s the hardest thing some of us have ever face in life. God deals us all a different set of cards… I believe it’s how we deal with (“play”) those cards that makes us grow (or not). Peel away, mama. There’s something refreshing, freeing, and therapeutic about being real…being ourselves…and growing! HUGS

  15. hi i’m anne from tasmania, australia, i had a birth experience very much like yours and little nellas arrival. different but the same in so many ways. i lived a life with my harvey as normal and full as i could, determined to never let his condition either define or depress us. in order to do this though, you have to to go through the hard hitting realities and acceptance every now and again, then they pass and you can get back on with happiness. it can get harder as they get older just because the differences become more pronounced, after all most newborns act the same. you do an amazing job and show great strength and courage and have a beautiful family , its obvious how much you love each other and in the end, thats all that matters xxx anne

  16. Anonymous says:

    I understand that you are going to go through bad times and I really feel for you. However, your comments comparing the disappointment of DS with your friend having 2 boys made me SO angry.

    Do you think your friend went through the same pain as you did when you had Nella?
    What would you say to a family who had only boys and one had DS?

    As a sensitive person, I do not think that you realize what you said.

  17. I understand what you are saying. I have those “what if disappointments” too. For different reasons but it doesn’t make them any less disappointing.

  18. I have to repost because I can’t stop thinking about your post.. I work with children with special needs and more specifically autism! What you describe is exactly how i know the parents of the children I work with feel.. I am in their houses weekly and my attitude is of that when I walk in their house- beauty does await and the acceptance takes time but know that their is love and nothing beats love..
    your daughter is beautiful and my 1st born (jan 9 2010) would be the best of playmates with your sweet Nella
    here’s to real thoughts and love kelle – enjoy your trip :)

  19. Beautifully written and so very true. There will always be little nagging reminders of your truth over the years, but it is how you handle the reminders, and grow from them that truly matters. My 3 year old has leukemia and I often even forget that he has it until I am rudely reminded by an ER or hospital visit. There is a small truth to ignorance being blissful :)

    Have fun in the Keys its looking like its going to be a hot week here in FL!

  20. Gosh I love your blog.

  21. “Parenthood is hard and beautiful. Scary and rewarding. Sad and Happy. All at once.”

    so so true. I think from the moment you fall pregnant the journey begins. The journey of what ifs and to be honest I don’t think it ever stops. But it is beautiful and the ups and the downs and all the what ifs in the world are what make it so special. Thank you for sharing your voice. You so truly echo the sentiments of so many others out there xx

  22. Anonymous, I am a mother of two boys and one has Down Syndrome. I have no issues with what Kelle says, because it is so right. I do have a sharp pain when I realise that I don’t have a Down Syndromeless son, just the same as knowing that I won’t have a little girl.

    You are correct in saying that the birth process is completely different for some, however it isn’t about birth at the moment, it is about living with what you have.

    Take care dusting yourself off Kelle, it still happens to me after 5 yrs. I have just had the most beautiful date day with my son and I am completely and utterly in love with him, he amazes me daily.

    Nella is absolutely gorgeous with her bow shaped lips. Precious.

  23. Anonymous,

    Perhaps you didn’t see that I made the same comparison with having just girls and no boys because not having a boy can be just as devastating to someone who was hoping for one. The point I was trying to make is D.S. is as little of a deal to me as either kind of gender disappointment (which is a very small deal indeed).

  24. Anonymous says:

    Oh Anonymous,

    Don’t twist Kelle’s words. She is speaking from her heart. This is her life, her story. She did not type this to offend anyone……She is just sharing her beautiful life with us and I, for one, love reading what she writes….

  25. This comment has been removed by the author.

  26. Can’t even begin to say how right you are about parenthood being hard and beautiful.

    Once you are a parent, life as you know it changes…but for the better.

    Yes, we will all worry about the first time our kids will get on a school bus…or the first time they ride their bikes without training wheels…or when they get their drivers license…or go off to college. I think at every stage of their lives we will find something to worry about that will take our breathe away as we try to sleep.

    But in that same breathe, the unbelievable joys that you never would have expected also take that breathe away.

    And Anonymous, don’t twist the words of a woman who is letting us into her world, that most of us will never know exactly what it is like to be living.

    Kelle, keep writing from the heart!

    Have a great time in Key West!

  27. God bless you and your fabulous family. Every child should be as lucky to have a momma like you. One who loves them deeply with every fiber of her being. DS or not, Nella is perfect. The perfect daughter for you and Brett and the perfect sister for Lainey. It doesn’t take the hurt or pinching pain away, but we know that you love her unconditionally and she feels it too.
    Now go create those once in a lifetime memories and we will be waiting here to hear about them when you return!
    Leighann

  28. I’ll try this one more time because my comment isn’t showing up and if it suddenly appears a trillion times, you’ll know it was important…ha.

    Anonymous…perhaps you think my comparison was offensive because you think D.S. is devastating. The point I was trying to make was that my acceptance of it (very different from my initial shock and I was clear to word it carefully) is as little of a deal to me as either kind of gender disappointment (which is a very little deal indeed).

    I made the same comparison with parents who have just girls and no boys.

    I’m sorry if you were offended.

  29. Thank you.

  30. You’re amazing. Thank you!

  31. You are so candid and I admire you for it. Enjoy your trip. We honeymooned in Key West and can’t wait to make it back!

  32. kelle, this is really beautiful and so well put, thank you. i was blessed to have a 4 hour long conversation with one of my childhood friends this past weekend and we talked about so many of the things you write about here, mainly, our vision of what we wanted parenthood to be and how much more difficult and beautiful it actually becomes. many hugs to you and your beautiful girls.

    **and let me just say, this mom of 2 boys started selling vintage dresses on etsy to satiate that “i NEED to buy frilly dresses” piece of me.** lol! somehow we all find our way :)

  33. My friend, John, is a DJ in Key West at the Lazy Gecko. He also works at something Conch. Have a blast!! I hear it’s gorgeous down there.

    And the picture of Nella…breathtaking!!

  34. Molly D says:

    Thank you for whipping my butt in gear this morning…The bus hit me pretty hard this morning myself with my own issues but your post reminded of all the good that is in my life! So thank you for so boldly speaking exactly what I needed to hear!!!

  35. Wow Kelle…please know that you’re SO loved by someone who’s never met you! Even the posts that make me cry leave me feeling optimistic & wanting to make the most of life. I feel like I have the motivation to be a better wife & mommy after reading your blog…perspective is a great thing! Thanks so much for sharing.

  36. Anonymous says:

    Kelle you are such an inspiration!!! Your words are just beautiful!! You write from the soul and every word is a truth!!!

    Have a wonderful few days away!!!

  37. LineMarie says:

    It is indeed the Perfect Picnic!!
    Great article.
    You’re the best!! :)

  38. Love what you say, as always. You have a gift with words and emotions that makes me feel like I have been given a gift every time I read your blog. So thanks, and have a fabulous time with your family in Key West!

  39. Nella’a DS wasn’t a surprise to the big man upstairs. To you, yes, but not to Him. Maybe He wants you to run into His arms when you feel that bus coming. I’m so grateful you can come here and get it all out. I learn so much about myself from the things you write. Thank you for opening your lives, your thoughts and most importantly your heart. Keep it comin’! I seriously have so much love for you and your family!

  40. Can’t stop lovin your honesty, Kelle.

    Love, and smiles
    Lori Mc

  41. as always…you said it “just right” and shared a particular moment in your life and made it part of ours, your readers

  42. Kelle, I cannot think of a better way to start the day. Just like each person is different so are the situations we go through and the choices we make. A situation that might be easy for one person might feel like a mountain for another. My little Briella has DS yes, but that doesn’t mean I worry about her any more or less then my boys who don’t have special needs. I can’t tell you how healing and rejuvenating your words are, thanks for sharing your life and thoughts with strangers like me!!

  43. Wow, what a beuatifully written and honest post. Someone once told me that our life is like a tapestry in God’s hands. We can see the back side as He’s weaving it…and it’s a tangled mess of threads that look like they don’t make sense. But He can see the front of the tapestry, and when it’s finished we will too, and it’s BEAUTIFUL. I feel like you’re getting to see little glimpses in this life, and that’s awesome.

    Thanks for sharing your heart~
    Kelly

  44. Dianagoddess says:

    Be grateful for ALL the blessings you have…there are many.

  45. Thank you for being so honest. And for inspiring me to no end. You will never know how much you have changed my life and helped me get through postpartum depression.

    My favorite quote from this post is
    “everyone’s life is custom-made for them”

    Stay strong, Kelle. Your Nella is a beautiful little being and so are you.

  46. Kelle- Well said!!! The bus comes around once in awhile, but as quickly as it comes, it leaves. Your Nella is absolutely beautiful. Down syndrome is beautiful and whatever Nella does is normal.

    Amy

  47. Anonymous says:

    Anon, Kelle’s just talking about the pain of not knowing or living the “other options” when life gives us our path. She ain’t knockin on boys–she even says she’ll never know what it’s like to have a boy since she has two girls. It’s just a comment on appreciating what you have and not longing for the alternative. Hope that makes sense to you now…

  48. We have a girly with a genetic disorder and it is exactly as you describe. In the beginning I didn’t sleep well, cried a lot, and wanted the nightmare to be over. A year later I sometimes have a night where I lie and think about the “what if’s” of the future, and wake up feeling it. Then my sweet little thing wakes up, and the joy that she brings helps me to push all the scaries to the back of my mind and move forward with our lives. :)

    Andrea
    http://munciemenn.blogspot.com

  49. I love that you are so human and share this with us with such beauty and grace. Your girls are so lucky to call you their mumma. xo

  50. I would love to adopt a ds baby from Russia or the Ukraine one day and so i have found myself ordering literature. My favorite book so far is a book with pictures and letters from 14 moms and their ds children. All between the ages of 21 and 43. She also included the story about Holland and this following one that I love. It’s gonna be kinda long, but stick to it! It is worth it.

    It’s about how God chooses the mom for a child with special needs:
    Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

    “Armstrong, Beth; son; patron saint, Matthew.

    “Forrest, Marjorie; daughter; patron saint, Cecelia.

    “Rudledge, Carrie; twins; patron saint…. give her Gerard. He’s used to profanity.”

    Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”

    The angel is curious. “Why this one, God? She’s so happy.”

    “Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

    “But has she patience?” asks the angel.

    “I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independance. She’ll have to teach the child to live in her world and that’s not going to be easy.”

    “But, Lord, I don’t think she even believes in you.”

    God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

    The angel gasps, “Selfishness? Is that a virtue?”

    God nods. “If she can’t seperate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

    “I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

    “And what about her patron saint?” asks the angel, his pen poised in midair.

    God smiles. “A mirror will suffice.”
    By Erna Bombeck

  51. Heidi K says:

    Life brings people different obstacles which may seem small to some and very challenging to others. Whether it be two boys, two girls, one child with downs or two children with downs, it is truly how you handle it that makes you a strong person. Thank you for the encourgement to be strong in whatever cirmcumstance I encounter.

  52. Julie M. says:

    I love the pic of Nella, she is a beautiful little girl!

    2 years into the DS journey I still get ‘hit by the bus’ but not as frequently and not as hard. I can honestly say if I had the chance to choose between Kate with or without DS I would choose with. It still surprises me to say that but it wouldn’t be my Kate without DS, and she is the most wonderful little girl, just as wonderful as my other 2 kids.

    Enjoy your littles today!

  53. You are so right. There are so many random things that we just can’t know and it does no good to dwell on each and every one.
    Oh, and just so you know- no need to google anything. I have a daughter that is almost exactly a month older than Nella (born December 30th) that does not have that magic extra chromosome and she’s a jerker too. She sometimes even hits herself in the face on accident with toys she’s holding. My older child, Mady did the same thing at this age. They just don’t have awesome control over their large motor skills yet.
    And it’s ok to get hit by the bus. Everyone does. But the highs wouldn’t be as high without some lows thrown in between.
    Love your blog. Love your outlook on life. And love, love, love those precious littles of yours!

  54. Natalie says:

    Oh Kelle, this is beautiful. Thanks for starting my day off with happy, joyful tears. Have a fun and safe trip!

    Natalie
    Atlanta, GA

  55. Kelle-
    I love the way you write and my favorite; “everyone’s life is custom made fir them”….so true and such a fantastic way to look at our situations and our lives. Love it! And what a sweet little thing in an adorable hat! Thank you for sharing and for your honesty!

  56. Anonymous says:

    Hey Sensitive Anonymous,
    Lighten up! You are missing the point of this entire blog.
    I’m guessing that anything would make you angry today.
    Time to change that!
    Chill out, pour a nice tall glass of lemonade, let some sun shine on your face and find a “small thing” in “your own life’ that will turn your frown to a smile.

  57. kudos to you for getting up and dusting yourself off after the bus accident and NOT having to call the ambulance to come take you to the ER where have to pull out the defibrillator.

    ok maybe that was taking the analogy too far…

    but bus hits happen and its how we handle the post trauma that matters.

    xoxo!

  58. can i just say this is freaky…just this morning i was watching one of those “having a baby” shows and the mom went into delivery and in that moment i went to the “i will never feel that” place in my mind. tears welled up and my heart hurt, then i heard that familiar “feet hitting the floor and sprinting down the steps to run to momma and give her the morning love choke hold”…and i thought who the hell cares! it doesn’t matter how we got here gracee is mine and it is better than anything that i could have planned on my own.

    ain’t life grand!!!!! love you and your blog…keep it up my friend. ♥

    and to all the anonymous in the world…stop with the reading stuff into things that really are meant to be inspiring and understanding, seriously it is really getting a tad bothersome…go have a lovely ice coffee on your patio and thank God for the beauty in the world and just chill…breathe deep and know that we are all friends here and come here for the beauty in kelle’s world and in her words.

  59. Anonymous says:

    If you are a frequent reader of posts over years, I think you will know that Kelle always wanted girls even before they were born so that is why is stings so much that she would compare a chomosomal disorder with having a boy. She may never know what it is to have a boy, but I don’t think that would really bother her.

    I realize that she probably did not mean to hurt anyone but the carelessness of her words hurt me and I’m sure that down deep, she hurt that friend too.

    ..and oh Poster above – thank you very much, I am quite lightened up. I admire Kelle very much and her approach to life very much aligns with my own attitude. But you know, every so often two people will not agree. Blogging is not a private activity and Kelle did invite comments.

  60. That was beautiful Kelle…we all have so many things we will never experience or “know”…the key is loving what we do know and loving what we do have and cherishing everything little thing about it!!
    Sunnie in NC

  61. Anonymous says:

    I have a daughter who turns 6 months today, and I too was rattling a toy in front of her and she made choppy grasps and started hitting her belly to get the toy. I too was worried that something was wrong, because i couldn’t remember my 4 year old ever doing the same thing. I brushed that thought from my mind and told myself, if someone was rattling a toy in my face, i would be so excited to try to grab it, i might hit myself a couple of times in the belly too! :)
    I just started reading your blog a couple of months ago, and i think you are amazing, and Nella IS beautiful and perfect!!

  62. As I was reading your (beautiful) post, my three year old came over to me
    Amelia: Who’s that?
    Me: A baby.
    Amelia: What baby?
    Me: Baby Nella.
    Amelia: Whose baby is that?
    Me: Miss Kelle’s baby.
    Amelia: That’s a good baby. I love her.

  63. Thank you for putting yourself out there for all of us to learn from. You are an amazing writer and so self aware.

  64. Anonymous says:

    Love this post. Reminds me that you are human too! Sometimes I get intimidated because you seem so perfect, but it never lasts long because your inspiring words sweep me away. You are truly a beautiful human being!!!

  65. Hey Kelle,

    I’ve been reading for a few months now, but I’ve never commented! Too daunted, I suppose, but I absolutely love your blog.

    I had to post today though because if I can, in any small and teeny way, make you less worried, then I will.

    I have a little baby boy who was born a week later than Nella, and I’ve been worried about him because Nella has been hitting every single milestone you’ve mentioned BEFORE him! I know that babies with DS typically take longer to hit milestones, so I couldn’t help but wonder, “maybe Elijah is behind then…” or, “Maybe she doesn’t have DS after all” but I’m not about to suggest that for real, because I’m no doctor and that would be way too presumptuous. It turns out Eli has hit every milestone on time, thus assuaging my worries on that front, but without fail, if Nella can do something, he’s still weeks behind her!

    Now what prompted all of this was your worry that Nella’s movements were jerky and that she was drumming her chest, because Elijah does that too, except he spasmadically hits his face with his fist, while seeming totally unphased that he’s doing it.

    So I guess from one momma of a 5 1/2-ish month baby to another, I’d say she’s doing juuuuust fine, and then some. She’s beautiful and amazing, and I consider you guys so very blessed.

    Thank-you for how beautiful your blog is – both the words and pictures. You continue to be an inspiration to me and all who I show your blog to.

    -Holly

  66. Anonymous says:

    You know I was feeling that way yesterday; totally not the same situation, but that getting hit by a truck feeling, and then out of the blue I came across this guy’s sermon…it was great. If you have some time to listen I think you would enjoy it…and he is pretty easy on the eyes too; is that okay to say about a pastor? Yikes. Anyway it’s worth a listen. :)
    http://generatelife.com/media/vimeo.asp?embed=clip%5Fid%3D12828531&date=June+23%2C+2010&title=Misplaced+Passion+Part+3&speaker=Ronny+Roa

  67. Sigh.
    Kelle, Well you know you have made it when you have haters. lol
    I understand EXACTLY what you are saying.
    I have three boys and I have those moments of realization, little pangs, when I realized I wont have a daughter. That I wont plan a wedding, hold her hand as she welcomes a baby…ect. But then I move on.
    It’s the same thing when it hits me that my oldest son has autism and mental disabilities. There are lots of maybe’s and whatifs’ in life.
    We can’t sit and wallow in them. Choosing to focus on the good, esp. the small things is what makes life good.
    Keep on sharing. Thank you.

  68. I love reading all your post, especially this one. Thank you for being such an inspiration to all moms!! You have a beautiful life!

  69. your words are so honest, and your photos so beautiful.

    we lost our baby girl at 6 days old, so I totally “get” what you are saying. But at this point I realize losing Mina was just a part of my life and now it’s actually difficult to imagine my life differently. I mean, I could have NOT lost Mina, but then I wouldn’t have had Charlie. I believe that our lives are on a certain path, and while they aren’t always the paths that we would choose for ourselves, they are OUR paths.

    Ok, I’m rambling, I wish I could articulate as well as you!

    Here is a link to my Mina story if you care to read it:
    http://myblogbyrachel.blogspot.com/2009/10/minas-story.html

  70. <<>>
    Perspective is a grounding force sometimes, and it’s that what you need when the bus comes roaring along.
    My 11 month old daughter has to go for surgery next week – simple surgery – but surgery none the less.
    My husband and I were in hand wringing, why us mode for a few minutes, til he turned to me and said “we are SO LUCKY. Let’s get a bit of perspective here”. So we chilled right out.
    It’s hard sometimes, because you only know and react to your own reality, but damn, it could always be worse.
    Thank you so much, once again, for sharing a slice of your beautiful reality. I love my kids with all my soul, and it’s this that makes that bus come a calling. -x-

  71. Great post. Our daughter was born Jan 23rd – so she and Nella are just about exactly the same age. And not a word of a lie – she was doing the choppy movement thing with her arm against her bottle yesterday and I turned to my partner and said “is that normal???”. We say that a lot in our house – “omg, do other babies do that???”.
    I completely get what you’re saying about that little bite of sadness that passes quickly. With our little one, we’ll never know what it’s like not to have to explain her adoption and have talks about her birth parents (we love her birth parents, but it’ll never be simple and easy). But then nothing worthwhile ever is.
    Your blog is fantastic, I read every post and LOVE them all. Thanks for letting us peak into your world.

  72. My son was born just a couple of weeks before Nella and he also makes choppy movements and I remember my first son doing the same thing and so it is normal. I just love reading your blog your words are so inspirational! Thank you very much!

  73. Kelle – a lot of it is the developing nervous system.

    You are a beautiful inspiration to so many. There are days I forget my autistic son is autistic…and moments like yesterday where it becomes clearly apparent he is “different” from other kids. But you’re right. You suck in oxygen, wait two seconds…and exhale. Because to us, they ARE normal. Their normal.

    Other peoples’ normal is overrated, anyhow.

  74. Anonymous, I’m sorry you were offended but I chose my words carefully, prepared for this very argument. I likened my acceptance of D.S. (very different from my initial shock) to gender disappointment only to point out that it’s no big deal as anyone who’s experienced gender disappointment will I’m sure admit…a bit of a sting at first but no big deal later. While yes, I wanted girls to match the boys my husband already had and was honest in my admitting that, I know parents who had gender disappointment on the birth of a girl after hopes of a boy. It goes both ways and I know if I had two boys, I’d be just as happy. My friend I spoke of is very honest and open about the disappointment she felt and I shared my comparison with her. Because she, like me, sees not a devastating chromosomal disorder but a sweet little perfect Nella, she understood the comparison completely. However, your point is graciously noted and I’m happy to understand readers a little more. Thank you!

  75. I remember the choppy chest bagging from my little one! We called her Tarzan haha. She does not have DS, so it’s probably just a regular ‘ol baby thing. Enjoy it!

    Have a great time in the Keys!

  76. Anonymous says:

    “If you are a frequent reader of posts over years, I think you will know that Kelle always wanted girls even before they were born so that is why is stings so much that she would compare a chomosomal disorder with having a boy. She may never know what it is to have a boy, but I don’t think that would really bother her.

    I realize that she probably did not mean to hurt anyone but the carelessness of her words hurt me and I’m sure that down deep, she hurt that friend too.”

    I just have to share that I very much agree with this comment.

  77. Stephanie in NH says:

    This is Kelle’s blog, basically an open diary. The point of writing a diary is to “say” what’s on your mind. If people out there find it offensive, so be it, but don’t give the author sh*t about it! Read it, enjoy it (because it’s KELLE’S diary you are reading!!) and move on.
    Kelle, I for one, LOVE your blog! I love your photography, and the fact that you can, and do, openly share your innermost thoughts, your daily routines, and your family!
    Your children (steps included) are beautiful, and I believe one day, your daughters will thank you for documenting their lives through your eyes.
    Thank you!
    P.S. Key West is my favorite place on earth (next to my own home!) Have a blast! If you can, drive an hour north to Marathon and visit the Dolphin Research Center. The girls can swim with the dolphins.

  78. Ive always thought…If you could put yours and everyone elses problems/troubles in a hat would you want to pick out someone elses trials or would u be hoping that you pick yours!!!
    I have a little girl that is 3 now that has ds and I still have them little moments from time to time. But they are only small moments and I wouldnt want her any other way..

  79. Kelle, I think it’s a 6 month old thing, ’cause mine does it too. But if it IS a DS thing…she is still so beautiful and perfect…and it is so obvious that you already know that! :). Thanks for being such an inspiration for mamas like me…like us. Enjoy the Keys!

  80. Perfectly written. I wish I had a way with words like you, truly a talent. I too have my little who has DS and is just weeks older than Nella. Your posts lately mirror my thoughts and sentiments exactly, it is so unbelievable and scary. BUT, so beautiful. Enjoy your trip, and thanks for being so truely honest, it is wonderful:)

  81. for those who do not get this post…kelle was not comparing how much greater one persons pain is over another. she was saying we all have this sense of pain..my pain over not being able to have a child is not greater than someone who has a child with ds..it is just my own personal pain and i still feel it..but in our own personal pain we search for own beauty, our own silver lining..mine was adoption. now some would say that i should no longer feel that pain of not being able to have a baby when i am raising a beautiful girl..but every now and again it comes at me, i feel the “what might have been”..and then i get momma loving from my girl and i know that this was meant to be.

    kelle your words inspire and i so get what you wanted to share in this post. it was a way to start the day. now lets all go have a lemonade or iced coffee on our patios and seek the beauty in each others lives. we are all friends here.

  82. Kelle, You keep me honest with myself. I love every post you write, I get so giddy inside when I log on and see you have a new post up. You write so beautifully and you “speak” to me in every post. I cry and laugh through them! Your family is so beautiful, and that little Nella I want to give her a squeeze so bad! Have a fantastic time in Key West! Now i’m off to read the perfect picnic!

  83. Thank you Kelle, for being as amazing as you are!

  84. Beautiful Kelle! Your post reminds me of this quote:

    Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.
    Elizabeth Stone

  85. I have just discovered your blog and think it’s amazing. Your photos are fantastic and your children are just
    beautiful.

  86. I’m currently pregnant with my second son and our last little. And I’m a huge fan…and not at all offended by your comparison. I love that I’m having two boys. I love that they will grow old together and have each other to be buddies for the rest of their lives. Before my first son was born, I wanted a girl. Desperately. I didn’t know what I’d do with a boy. Bugs, dirt, scrapes, messy bathrooms. It freaked me out. Are there days that I wish for a girl…ABSOLUTELY! But to your point…I am so blessed to have such a wonderful husband, the sweetest little boy that says ‘I wuv you mommy” and another healthy boy on the way. I get to be the queen of the house!! And feel so blessed.
    Your blog is a blessing and it keeps me feeling like the luckiest person in the world. And one day if I’m ever down that way, I’d love to have a cocktail! Thanks so much for your beautiful heart and soul!

  87. gillian says:

    This post reminds me of a time that I was freaked out that my newborn daughter might be autistic – because she refused to make eye contact despite my best efforts. Turns out she was just fascinated by the frames of my glasses. ha. Man, did I lose sleep over that!
    (and now, she’s recovering from a brain injury, and has much bigger issues than autism would have brought us – but there you go)
    And FWIW, I have friends who were deeply saddened by the whole gender issue – truly morning the daughter they never had.
    Great post!

  88. I’m a little over 11 years into this journey and it still hits sometimes. When our children with Ds are babies, we do worry if things are “normal”, or whether it’s the “Ds”. Noah used to hold his left arm up in the air and stare at it for 20 minutes. Why? I have no idea, but it was cute as can be!!! And he would make this “STIFF” face and grind his gums and put his arms straight out all stiff and look mean. I asked the therapist about it and she said that our children with low muscle tone will do all kinds of things to make them feel strong. So maybe that is what Nella is doing. Pounding a toy on her chest makes her feel strong, makes her aware of her muscles!!! When I look back at those little wonders now I have to laugh because they seem so trivial compared to what we deal with when our children get older. Now it’s “will he be invited to any birthday parties”, “will he have any typical friends”, “will I end up in jail because I beat up some 10 year old that made fun of his speech”, “will I end up in jail because a bunch of teenagers called him a retard”. Believe me I’ve pictured myself in jail a million times and just can see myself on the headlines of the Nancy Grace show “mom beats the crap out of a minor for bullying her child with Ds”. It could happen, I’m serious!! I love my son, love him with all my heart, just as I do my daughters. But this love is different, it grabs deeper. I thnk it’s because he needs me more, he probably always will and he loves with every fiber of his being. He MEANS every one of his smiles, and his hugs and I get 1000 or more a day!! I can’t even count how many times a day he says “I wuff you”, and he means every one of those too!!! :) I would not trade him for the world, but I do have to say that I feel like those “hit by a bus moments” will continue until the day I die, because he is my heart!!!

  89. Anonymous says:

    DS vs. having typical boys? Yeah, sorry but there’s no comparison. Just wait until the surgeries, all the interventions (why isn’t E/I in your house yet?), the fights with school districts (IEP’s, decent therapists and so on)regarding what is an appropriate education for her. Having a chid with a disability is not all sunshine and roses like you want to portray. Wake up hon. You are cleary soooo image consious and it is so obvious that you are angry you don’t have the “perfect yuppie” family like you envisioned. Yuck to this blog.

  90. Anonymous says:

    I guess these choppy movements are normal for a lot of kids – DS or not.
    I have twins and one always made smooth movements and the other one was a bit … choppy.

    @anon: yah, Kelle always wanted girls. So what? I’d bet that if she’d had boys instead, she would have treated them with the same love she has for Lainey & Nella. She didn’t compare boys to diseases. Only said that there are always things you will not have and may wonder what the alternative would be like.

  91. I was wondering how things were going in terms of how DS fits into your life so thank you for this post. I love your blog and I’m inspired by you and I look forward to following your journey as Nella grows and becomes her own little person. I think that you are a wonderful role model to so many people but most especially families with children with special needs who so long to be considered a normal family. Just because we have a child with special needs should not “stereotype” us…we are just like any other family with ups and downs like you said…happy days…sad days. I think you are really going to help SOOO many people adjust and see it’s just a NEW normal when you have a child with DS or any other special need. Thank you Kelle!

  92. Anonymous says:

    I appreciate this post. I have 2 boys, both with autism. It seemed in the beginning that we were the bus terminal, with buses coming in every direction. I was sad for a very long time and I missed so much.

    I am now doing what you mentioned. I am seeking others living the way I want to live. Coincidentally, that’s how I found you. Thank you for your frequent reminders to live life to the fullest.

  93. love you so much.
    have fun on your little getaway!
    call me on the way there. xo

  94. Giant hugs to you today. Though I know you have dusted yourself off and have moved on. It’s what is so admirable about you. You are so right that every mother gets hit by the bus, for different reasons. Funny enough, I had my own moment last night and it hurt so very deeply. It’s that parenthood thing. And we do have to have tough skin. Interesting too how our littles are the ones that heal us.
    Have a great time in Key West.
    xo
    Kris

  95. i know just how you feel…and i love this post. I was thinking just the other day…about the fact that i am able to ‘forget’ that my little guy has that extra chromosome…i forget it and then i notice it’s been forgotten and i remember for a second….i feel it too. Nella is doing so great and is absolutely gorgeous!

  96. Kristin says:

    My Andrew is just a few weeks younger than Nella, and he has been making the same types of movements the past few weeks. No DS here…just a little bundle of energy trying so hard to copy his big brother while he watches him play that he turns into a spaz! Oh, and just my two cents…for some people gender disappointment is a huge issue…I am absolutely head-over-heels in love with my boys, but I long for a little girl and that bus hits me quite frequently. So while I can see that my longing and actually having a child with special needs are different issues…I get what you were saying…everybody has their own busses to deal with, no matter which one is lighter and which one is heavier.

  97. I hope you feel better Kelle! Thanks for sharing… in this life, NO ONE is perfect – even US, mommies… You do your best and move on… we are humans and we sometimes – get hit by buses! It will pass and you will be back to your fabulous self! Enjoy your lil holiday… can’t wait to see your pictures!

  98. Anonymous says:

    I am surpsied that you did not know she was D.S. before she was born. Did the Alpha Feta Protein test register normal? Odd. I thought they coud tell 100% of Down Syndrome before birth pretty much through that test and through suspicious ultra sounds.

  99. Thanks for this post! I emailed you a few weeks back after our DS baby (abby) was born and am still having days like this more often than I have “Italy” days. I jump on here and read your old posts a lot.

    Good to know I will get to where you are sooner than later – and glad to have a great role model in you!

    – Melissa :)

  100. This is a beautiful post. Sweet Nella is changing the world.

  101. Love your blog. But don’t comment that often. I just thought I would let you know, I have a little boy who was born a week after Nella. His movements are still quite choppy. Hope that helps with one worry!

  102. Thank you so much! I needed this post. I was just getting down and feeling like I could not get it together like you always do- despite tough situations. This post was the MOST encouraging! The most inspiring yet. I love everything you say but this one hit the right spot. I have never felt more validated in the blogging world.
    And i liked your comparison- every life is so different and has it’s “what if” moments- no matter what the level. I liked how you deal with that.
    Thanks for your vulnerability and honest thoughts. It was quite positive. No one has it all together ever- that is why we are all here to uplift and inspire. I have had many of those moments too.
    Enjoy the rest of your day and do not worry too much about the opinions of others. Everyone has a different understanding of situations and sometimes it is on a completely different level than both parties meant. Communication is tricky. It is hard for either person to be understood fully from their own experience.
    Your experience this time- for me- was incredibly relatable. Thanks.

  103. Your blog is always so inspiring and beautifully written… I hope you never stop writing it!

  104. I was so happy to see a new post!! Thought we would not be getting one until after Key West. Anyways, just last night my husband held our little in the air and told him he loved him just the way he is and he wouldn’t change him for the world. While we are “aware” of his DS, it’s something that lurks behind. He is a baby who sleeps, eats and poops. Most recently, he smiles huge whenever you look at him and coos when you talk to him. He is a tiny human being and not at all that different from his sister when she was his age.
    Well, I hope you take the comments left here in stride. I’m totally picking up what you’re throwing down. Unfortunately, it doesn’t look like everyone does!!

  105. Wow! How beautifully written. I am ready to start my day now and follow into your footsteps, enjoying the small things scary moments and all!

    Thank you!

  106. Your posts are beautiful and inspiring! Thank you! I just welcomed my second little girl into the world 6 days ago and as I work through some baby blues, you reminded me how precious life is and how to always look on the bright side. Your girls are gorgeous and I love your blog. The music is also a great touch! Thanks again!

  107. Funny that you should post this today, as I myself, just got “run over by the bus” this AM. Today I took my adorable, intelligent, happy 19 month old (who happens to have DS )to a music class for the first time. He was the only “special” child in a class full of typical peers. Josh did great. He was attentive & engaged the entire time. Playing his musical instruments with the rest of them. Why then, did I cry the entire way home? It wasn’t Josh, it wasn’t the other kids, it was the other moms. Their “too frequent” gazes in my son’s direction. Their well-meaning compliments, “Oh your son did really well today, He was really able to keep up with the others”, & “He seems so bright”. Well, those nice comments, they cut me to the core. It was a reminder that my son is, in some ways, different. The majority of the time, when I see my son….he’s just that….my son. But ever once in awhile, he’s my son with DS. And sometimes it hurts. Thankfully, those times quickly fade away when that adorable boy flashes his big grin my way. Then I realize he is perfect. Wouldn’t change a thing!

  108. You’ve got insight that many people on this journey don’t get so early.

    My daughter, Samantha, my *only* child (who will remain as such), has Down syndrome. She is 4 years old. She is beautiful. She is smart. She is *amazing*. She is my life. Down syndrome is not my life.

    And yes, although our acceptance came very early and easily for us, that bus still comes along and knocks me flat from time to time. But picking myself up and dusting myself off also comes easily for me.

    Blogging is my way of dusting off and sorting those feelings out. I’m glad you have that, too.

  109. Anonymous says:

    Another great post Kelle!!!! Have a great trip! Even though I don’t have kids yet I totally get what you are saying. I have always wanted a little girl. If I happen to have a boy Of course I will be greatful and love him no matter what but that doesn’t change the fact that I would love to have a girl.

    Looking forward to the next post!!!

  110. What I adore most about reading your blog is witnessing how amazingly devoted you are to these little girls. They’re so lucky to have you as their mommy! :)

  111. I think you hit the nail on the head with this post. We can morn for what we will never know, a little bit, but ultimately we’re given what we’re given. And the trick is to accept it with grace and find the beauty that lies in almost any situation.
    Thank you for this :) Have a wonderful time in the Key West!

  112. I triple love your pictures. You inspire me to keep taking pictures with my crapy old camera. Your little girls are 2 cute. I have worked with adults with DS and I can tell you that they are the most care free happy people I have seen. People with DS might look a little different but they are very caring.

  113. mommy of two girls too says:

    Kelle,
    Beautiful post, so real and true! These are feelings that all Momma’s and Daddy’s go through, whether or not they have a little one with special needs. I think we have all been hit by a bus one time or another. But, our littles are so precious and from the second they came into this world, they are loved. That is amazing- huh?? Little Nella is just beautiful! Have a nice vacation, Kelle!

    ~Deanna

  114. Dear Kelle – I read your blog all the time and your pots are all so beautifully captured, so magically written and sometimes so perfectly pieced that I forget you are a real mother. Not in a negative way – but in a “she has it all together” and “I wanna do that” kind of way. I want to live on the beach, take gorgeous pictures of my little boy, and wear funky shoes and bright colored nail polish. You are captivating and easy to want to live vicariously through – I know I’m not alone in feeling that. But your post about Nella’s birth, and the series to follow, and the one you wrote today – those are so real it makes my eyes well up with tears and my stomach do a weird twisting thing. So often I feel worlds apart from you – but not when I read about that “hit by a bus” feeling.

    My Jet – now 13 months -was born with Spina Bifida. And most days we feel so normal, so full of life and love and thankfulness for all we have and how precious it all is. But there are those moments. Those days. Those “hit and runs”. And it never gets old to have that gentle reminder that I’m not alone in having those days. Yes it makes me think – and sometimes makes me sad when I otherwise wasn’t thinking about it – but every time I do I feel stronger in the end. I will never know what Jet would be like without SB – but I cannot imagine my life without him just the way he is. Because as many scars and surgeries and difficulties he has already faced and will face…he is more perfect to me than any baby I ever imagined. He is my dreams coming true every “good morning baby” and sweet kiss goodnight.

    So I just wanted to let you know that out of all the ways you amaze, enchant and inspire me – the one you never prepared for and the one nobody would ask for…is the one that mirrors my life, strengthens heart and enriches my soul. Thank you. God bless. :)
    ~Joanna

  115. I wish Anonymous would go away… it takes away from the beauty of your writing, Kelle…. thank you for your inspirations… Your family is beautiful and lucky.

  116. I just started following your blog. Thank you for those honest and sweet words about how tough, and yet how rewarding parenting a child with special needs can be. I constantly feel the sadness and the blessing and sometimes both simultaneously, while raising my kids…especially raising my son, who has a rare genetic syndrome. So I appreciate your thoughts and your reflections on this crazy journey. Your girls are absolutely beautiful!

  117. I just started following your blog. Thank you for those honest and sweet words about how tough, and yet how rewarding parenting a child with special needs can be. I constantly feel the sadness and the blessing and sometimes both simultaneously, while raising my kids…especially raising my son, who has a rare genetic syndrome. So I appreciate your thoughts and your reflections on this crazy journey. Your girls are absolutely beautiful!

  118. Kelle, what a beautiful post. I love your blog so very much, and I totally agree with the point you are trying to make. And the anonymous commenters making all the insensitive statements I would say they should stick to the old truth that unless you have something nice to say you should not say anything at all. As to the choppy movements, my baby girl is 6 and a half months old and does not have DS. She makes those all the time – their movements are imperfect, they are just learning, and that’s the beauty of it. Your girls are beautiful, both of them, and Nella is such a blessing, I am completely in love with your family!

  119. Thank you Kelle. This post really means a lot. I found out 2 weeks ago that I am pregnant, and I’m a bit freaked out just at the thought of being a parent (although it was planned!)… Then they asked if I wanted to do a test to check for Down Syndrome and other similar “chromosome disorders”. My question was ‘why would I want to do that?’ The response I got was ‘because if there’s something wrong then you’re still in time to terminate’. I thought of you and Nella and your happy family and wanted to cry right there in front of the doctor (here in Italy they don’t have much bedside manner….). Needless to say I’m not interested in doing the test, as it would make no difference to my happiness or to my fear. Thanks for sharing your experiences – it meant a lot before, but now I’m about to embark on the parent journey myself, it means even more…

  120. What a beautiful entry…and you’re right, most of those “hit by the bus” moments are inherent in MOTHERHOOD, not just being the mother of a DS child. After suffering from infertility for over three years, and then finally having our beautiful son after 4 IUIs and 3 IVFs, I spend (I think…) and inordinately large amount of time worrying about him….and I know I shouldn’t. But it happens, doesn’t it?

    To “Anonymous” – It is clearly apparent that you are having difficulties dealing with your life circumstance. Kelle simply chooses to embrace hers in a positive light and make the best life that she can for her daughter. Shame on you for spreading your negativity! If you are not comfortable reading this blog, then don’t – but do not leave your bitterness behind for everyone else to sample!!

  121. I appreciate so much what you wrote, it’s just plain unadulterated, beautiful truth. The truth we have to face when we learn about our babies. You brought tears to my eyes as in your words I could hear my own voice.
    Thank you for your truth

  122. Kelle, this post really resonated with me. We all have those moments, those days… but I like how you see them, how you explain them… your perspective on them. For me, it is not knowing if I will have a second child. Not knowing if my marriage can weather these days. Not knowing how to find the most love and happiness with the cards I have been given. You give me perspective and inspiration to make it the best. I thank you for that. xo
    Sage

  123. Kelle,
    I smiled through the Anonymous comments – I’m glad you left some up, they were truly passionate! haha But then again, I’m the one who bursts out laughing when another driver gives me the finger, or when I see an amazing public temper tantrum. People are so different, I feel like I go through life staring at them in secret awe!

    Those posts from anon are to me like the awesome hairy plumber butt I saw at Lake Lansing yesterday. I couldn’t tear my eyes away!!! Misguided but mesmerizing!!!

    You wrote what you wrote with great clarity, and I knew exactly what you meant and immediately compared it to my own “things that will never be but it’s okay” – everybody has them, and being able to connect like that to your blog is what we come back for.

    You are not image conscious, that’s why you let us see your dirty laundry and your hurts. And anyway, we NEED you to be beautiful and wear awesome shoes! There is no way you can be honest in this blog and not offend somebody, no matter how pure your intentions. I think it’s a really good sign. Anonymous will be okay, and you gave her a safe place to vent here – I like how most of your readers weren’t cruel back to her, but pretty decent. That says something too :-) Love you.

  124. Kelle,
    I’ve been following your blog for a few months now. About the only one I follow and I play “catch-up” when I finally get a chance to read it all. My sister emailed me the link to Nella’s birth story, and ever since then I just want to see how you and your beautiful family are faring. Amazingly. Every time I come onto your blog for an update, you just blow me away with your beautiful outlook on life and your pictures. Oh how your pictures inspire me. What I would give to have your skills – words and creativity. :)
    My little girl, now 27 months, was born with a cleft lip/alveolar ridge. Many of the emotions, questions, etc that you have written about, I have also felt. Now her cleft is purely cosmetic, so while I had many of the same questions, I truly don’t know how you’ve felt. My little peanut has had one surgery already (at 11 weeks old) for her lip repair, and will probably have 3 or 4 more in her lifetime (around ages 4, 8, and 13 for sure – possibly more?). Your birth story had me in tears…mostly the questioning of love. Will everyone love her even though she’s different? Will I love her as much, even though she’s different? I questioned everything I did those first few months. And the why’s, and the what ifs and the what nows, and the wondering exactly what it means for your little peanut.
    You’re inspiring Kelle Hampton! Next time that bus comes around…tell it to move onto the next stop. :)

  125. I think this was beautifully put. Don’t mind the people who read to much into the comparison…I totally shook my head in understanding when reading your comparison to your friend with two boys. I just had my third boy and sometimes it will just hit me. The other day I read my cousin was expecting a girl and just started bawling. I went to that place where I thought of all the things I was missing out on without a girl. I don’t normally go to the place…I didn’t stay there long…but I went there for a moment.

    Is this the same as what you have felt in having a DS child, probably not. But your point, as I am reading it, is that we all have those moments where we realize that life isn’t what we thought or hoped it would be. Some peoples moments are bigger than others and for good reason. But the what we can all hope for, and what I think your blog beautifully displays, is that there is beauty in everything. Whatever we have been given in this life was meant for us. We can look at what we are missing or look at what we have been given. Thank you for putting that into perspective.

  126. Melissa M. says:

    You WILL never know a Down-syndrome-less-Nella, but you WILL know what it feels like to parent a special child!
    When I was in high school, my math teacher called my mom and insisted that I have my eyes checked because she was convinced that I couldn’t see the chalkboard. My mom took me to the eye doctor, and I was given a prescription for glasses. Having never worn glasses before & not wanting to start in high school, I stomped my feet and pouted all the way to the office to pick them up. When I put on my glasses for the first time, I was amazed that I could see each individual leaves on the trees. I said to my mom, “Can everyone see this way??” She answered thoughtfully, “No, they can’t.” Having a child with Down syndrome for me is like getting glasses; I stomped my feet and pouted into special motherhood, but because of it I can see the world in a new way!
    The other day I took my son to a doctor’s appointment, and there was another mama in the waiting room with a daughter in a wheelchair and on a respirator. When I walked in, I saw the mama and wondered if she had had PT already this morning, how she had fed her child breakfast, and wondered how she had gotten the little girl in from the parking lot. I beamed at the mama and sat right down to chat about the holiday weekend, the unusually cool weather, the sale at Baby Gap. I am a little embarrassed to say that before I had my little man, I probably would have smiled quickly at the mama and looked away, feeling sorry for her. Instead, I basked in the strength of the mama and in the beauty of the daughter. And, I related to them. I knew that the mama next to me was one of the lucky ones who has learned to value all people & to love unconditionally.

  127. annie b says:

    Kelle, I am so disappointed in some of the comments above, especially the ones that come after your VERY gracious (and for the vast majority of us, unnecessary) apology.

    You will note that a lot of us “friends” are incensed that you have been criticised for speaking from the heart. It’s what you do best, it’s what you’re known and appreciated for, please don’t change or feel you have to “pretty up” what you’re saying.

    We love you and your words whether you’re rockin’ it out or struggling against the tide. Chin up babe, you’re perfect as you are xxx

  128. Anonymous says:

    @anon July 6, 2010 8:28 AM: Kelle once wrote that she didn’t have the test ‘coz she wouldn’t have done anything differently.

    I don’t get why people are offended by Kelle obviously enjoying life. Come on people.
    And DS is not all about IEPs, fighting with school districts, setbacks … DS kids are first & foremost kids!!! Let her enjoy Nella just as she is, the fighting for rights stuff will come early enough and I feel that K&B will handle that well and fight for their bunny.

    And btw, IEPs and schools are not all bad … my friend has a boy with DS, he’s now 7, and she has been incredibly lucky with all the support she gets.

  129. Oprah interviewed Sidney Poitier several years ago. He said something profound that always stuck with me. Sidney Poitier has 6 children ~ all girls. An audience member asked, “Do you wish you had a boy?”

    His response was, “You may have a preconceived notion of what you want, but as soon as your child is born, you can’t imagine the world any other way.”

    His statement rings so true to me. I can’t imagine the world any other way than with my two girls. I also can’t imagine it without my nephew who has special needs. The world is richer with them in it.

  130. My little Addy Sue was born on New Year’s Eve just before Nella. It sounds like Nella’s actions are normal. My little one is doing the same things. I was actually a little jealous of how well Nella can hold her head up when on her belly. Our little peanut just gets mad and tries to roll back onto her back or screams loud enough that someone does the rolling for her. :)

  131. wow readers come on – a blog is written from ones perspective and yes npot everyone will have the same view but this is her space and shes expressing herself – lots of people have gender disappointment which in itself is hard to admit – just because she has a child with DS doesnt mean she can’t love life.. get over it people
    amen Kelle – thanks for speaking it from the heart

  132. My brother leaves for Afghanistan this Friday and I wake up everyday and that bus hits me. Buses suck donkey balls but we need them to put things in perspective. My brother and I have always been close but have grown even closer now. I’ve already cried a river over his deployment and I’ll cry another one on Friday when he boards that plane and that bus is gonna really hurt. But I am strong and he is strong and everyone else he is leaving here is strong so we will be okay!

    Thanks for your inspriring words.

  133. You have an amazing attitude on life.

    And yes, I think I know what you are talking about (the hammering the choppy movements) and I think it is normal. My 6 month old daughter does this all the time.

    Have fun on your vacation and thank you for posting so much.
    Reading your blog always kickstarts my mornings…

  134. Melissa B. says:

    The “special needs” bus hit our family too. Our 6 yr old son has Cerebral Palsy…..& he is the LIGHT of our lives. I DO spend some sleepless nights worrying about his future…OUR future. But for the most part, I rejoice in his happiness & all of the happiness he brings our family.
    You are TRULY an inspiration & I am SO HAPPY I found your blog….it really gives me perspective & can cheer me up even on my worst day.
    -Melissa

  135. Kirstin says:

    Aw, rubbish the bus got you but it sounds like there were some friendly passers by ready to heave you up and dust you down. It’s okay to have bad days, if you didn’t it would be harder to appreciate the wonderful, small things.

    Ps that hand chopping thing is familiar, fairly certain my boys did something like that too so it may well be ‘normal’, whatever THAT is !!

  136. Oh Kelle, you are fantastic.

    Nella’s story launched this blog into thousands of hearts and people come back for your beautiful photos and inspirational point of view. I think we forget what a truly great writer you are. I’ve always thought, take away the pictures and the music that you put up and this blog would still have that sparkle. I love how you write and I love how you put it out there.

    It’s been a gift to watch Nella’s growth and the transformation of this blog over the last couple of months. To see how big she’s getting and the different smiles she has, and to look at her pictures and see Lainey’s face in hers is truly remarkable. I don’t see Down Syndrome, I see a little girl who has the same hungry-for-life eyes that her big sister has.

    And to read the pain and rawness that you felt in January, and then to see you uncover the beauty of your little girl—its priceless and you’ll never know how blessed your readers feel to be able to witness that.

  137. Kirstin says:

    Grrr some of today’s comments are making me soooo cross. Someone clearly has something to get off their chest but this is really not the forum for it! This is a love fest don’t you know, somewhere for Kelle fans to share their passions not only for this blog but their own lives. We are right behind you Kelle and co. Xx

  138. I really want to put myself out there and say how much I appreciate your honesty. You say so much of how I feel. I’ve had those gut-wrenching moments of “never having a girl” and the same ones with having a special needs boy. But, you are right, we chose to pick up and live life, because…well, why not? And yes, some days are so bad, they feel like they consume me, but they are far and in between. Our son doesn’t have ds, he has autism, but if you EVER need anything, I’m just a click away and would love to chat, vent, worry, celebrate together if needed. I know you don’t know me, and am sure you have lots of support, but I’m here =]

  139. Such a beautiful post! Gosh, I’m all teary eyed now. I love how you express yourself in a way that we can all relate to so easily. I know that hit by a bus feeling! Thank you for the happy moment today.

  140. To Anonymous that mentioned that having a child with a disability isn’t always sunshine and roses….um is ANY child always sunshine and roses!? I am with Kelle when it comes to sharing all of my children’s milestones, joys and positive things. Who wants to share the tantrums, whining and bad times? That’s for families to deal with, not something you really want to blog about, unless you want input on how to cope!!!

    And to anonymous who suggested you didn’t know Nella had Ds before she was born. Well what would THAT information be used for.. an abortion? I didn’t know my son had Ds before he was born and I’m glad because I would have done nothing but worry for my entire pregnancy. Not all mothers jump into amniocentesis to find out that their child is “perfect”. Not all mothers need perfect balance and the “perfect typical family” to function. Yes I was upset when I learned my son had Ds, but you take what God gives you and you go with it. We could all look at Ds in a negative way, scream, cry, spend the rest of our life in misery, but what would that accomplish? We all have 1 life to live and our children were BORN with Ds, so it’s up to the rest of us to make their lives the best they can be, not to live life wishing the Ds would go away. My son has taught me more in the 11 years than anyone else has in my life. He has taught me unconditional love. He has taught me that even if you are given something that you THINK you can’t handle, go in all the way, make the best out of it and you will be surprised at how much you are rewarded in the end. It’s a shame these anonymous people can’t have a child with Ds in their lives because I think THEY are the ones that need to see the positive side of things and leave those of us who accept and move on alone. I need to go now before every vein in my head explodes. Love you Kelle!!!

  141. Anonymous says:

    I wish to distance myself from some of the ugly posts also posting as ‘anonymous’. Those are not me.

    Thank you Kelle for your reply and your graciousness. I sure I have inadvertently offended people before.

  142. i hope this doesn’t sound weird, but when i see photos of nella, i rarely think she “looks like” she has DS. not that it makes a difference. but your choice to not focus on it has come through to your readers. we forget too :)

  143. Kelle- I just did a search on DS because I wanted to know more about what you and your family are dealing with. I’ve seen many children with DS and the one thing I’ve always been told is how loving they are and aside from the obvious facial features and developmental delays I didn’t know what else they had to face. I forget that your little Nella has DS also because those of us that follow your blog see her as a sweet baby and have been watching her grow just like any other baby. After going on a medical site that listed the long list of possible medical set backs for those with DS I had tears in my eyes. Then I went to NDSS and watched a bit of “My Great Story” and again had tears in my eyes because of the hope that it gave for a wonderful future for your Nella. Her life will be different than what many of us know but you have given her a beautiful beginning and I pray that her path will continue to be filled with love and acceptance.

    I learned that there are different forms of DS. Does Nella have something other than the “typical” trisomy 21?

    Hugs,
    Lisa

  144. Good Lord girl… you sure can write!!! In our family we call them “DS moments”… those times it sneaks up behind you & throws you down hard. I am 4 years into this adventure & have those moments from time to time. It’s funny though they are never in the situations I thought they would be (IEP’s, evaluations, playing with typical kis, etc.) They are always random moments that take you completely by surprise. But that’s all they are, moments. Cause life keeps moving forward & something else happens & sweeps that moment into a different one. (Oh how I wish I could write as eloquently as you!)
    Thank you for sharing the many sides of your life, the good, the bad & the laundry.
    Big love & safe travels,
    Kate

  145. Anonymous says:

    You’ll get people commenting on here who don’t understand this blog. Don’t let it get you down Kelle. Keep up the inspiration, because we love you and we need to see it. Seriously, you have changed so many lives with your perspective. xo

  146. Oh, and when you find yourself asking if something Nella is doing is typical, DS or just Nella… talk with your EI specialist or other therapists. Our team was such an amazing resource for info & support. It really helped us.

  147. Choppy chops is the name of the game in Lulu land! She’s nearing three months, and still will smack her own self right in the face. And let me tell you, my Peapod, when she was learning to crawl, would crawl herself right smack into the wall…and keep head butting it, thinking she could get through. Down syndrome? No. Normal? Hell no. All ALL kids are gonna do some crazy things, extra chromosome or not. I seriously don’t believe in “normal” because if I did, I’m afraid I’d be missing out on it. Because even though I don’t know what it’s like to have a baby with DS, I sure don’t know what it’s like to have a baby (or kids for that matter) with “normal”.

  148. Stunning, Kelle. Thanks for writing.

  149. Amen sister. We made a conscious decision when Greyson was diagnosed with TSC that we would not treat him any differently. And yes, the bus hits you every once in a while, but you realize that life goes on and there is ALWAYS someone, somewhere who has it so much worse than you do. We visit St. Jude often for one of our doctors, and I always thank God that Greyson is as healthy as he is on a daily basis, because THOSE parents/kids are the ones who are suffering. We don’t have any problems compared to them.

  150. Beautiful post!
    it’s hard to live life without considering the what if’s… but life is much happier when we let them roll away quickly and try not to look back.

  151. I’m a regular reader and just wanted to comment to offer my support and love for ya!! My son with Ds just turned 5 and I’d by lying if I said Ds doesn’t hit me like a ton of bricks at times. How could it not. Let’s be honest, no one gets pregnant and hopes their baby has a chromosomal anomaly or CP, Autism, Cystic Fibrosis or a any other thing that we humans can have. It’s all in acceptance of the place you are in, and making the most of the life we have. And you clearly do that with love, humor and grace each and everyday. You are going to thrive as a Mommy to how ever many children God blesses you with (no matter the sex or the amount of chromosomees they have).

    I feel honored to share in this journey with you and all those other awesome Mommas out there!! And secretly, I’m kind happy my son is a bit older than your Nella cause I feel I have learned SO much from you…I’m glad to be able to offer some insight for you as a mom with an older child in return :)

  152. I’m sorry you got hit by the bus! Thank you for sharing it, though. It is so nice to hear how a positive, optimistic person approaches something that can cause heartache. Nella is beautiful! It is an honor to see you treasure her, even while you work through your fears.

  153. Linda MG in Calif says:

    To Anonymous (7/6, 8:08)..You say YUK to this blog? Hmm..well, here’s a thought. You have free choice, too, of course. and that ALSO means if this is so YUK here and you do not like it or enjoy it, you do not have to read it or comment. No one is forcing you to, right? Enough said.

  154. maryanne says:

    Kelle, I have a 14 year old son with a learning disability. In a recent meeting with the school department I was asked, “What do you want to see happen over the next year?” I replied, “I want his teachers to recognize what his strengths are.” The school representative said, “No one ever says that. Don’t you want him to work on his weaknesses?” I said, “I have been hearing about what you think he CAN’T do for so long, I would love it if we could focus on all the things he CAN do.” So in a small way, I can relate to your story. And thanks in part to your blog, I have been trying to change my outlook. His achievements? Oh, they mean so much — everytime he gets a good grade, or scores a goal, or surfs, or goes rock climbing, it builds his confidence and my confidence in him. I want to yell to the world, “See? Stop underestimating him!” No one, not even the so-called experts, know what he’s capable of. Nella will continue to surprise you as my son surprises me!

  155. Linda MG in Calif says:

    To JESSICA K (7/6, 6:05 am). THAT was SO beautiful, what you shared; about God choosing parents. Thanks so much for sharing that. Kelle, you insire and you have opened up all this sharing and sense of communty here! And thanks always for sharing your family with us, You and Brett and your girls and the boys. And Poppa. Have a great time on your trip!!

  156. You really do have a great outlook on things. My youngest was born premature and I often feel like it’s a waiting game. She’s doing so great and most days I forget, but some days I wonder if the other shoe will drop. And like you said, it’s hard to remember with my older daughter…when she did this, or how, and are they different? But then we go back to our day at hand and it’s okay :)

  157. DS hits me hard too sometimes, like when I see a group of High school girls playing on a sports team, laughing, talking about boys and texting each other I wonder if that will ever be my daughter (she’s 5) ….my heart sinks. The sad times will come at times throughout her and my life I suppose, but they will never be as bad as the first days. Take comfort in that. I love your photos and your blog, your daughters are beautiful.
    HUGS,

  158. I don’t have any kids yet. I’m a 22 year old newly wed and I think about our future every day; what our children will look like, what their personalities will be, if they’ll play soccer or football, do ballet or art, whether or not they will be healthy. I wonder if I’ll be a good mother. Regardless of what happens, though, I just hope I will be HALF as brave and gracious as you are. You truly inspire me with your positivity and your daughters are gorgeous.

  159. I just wanted to comment and say that I absolutely adore Kelle’s blog. Today’s post was so beautiful and honest. I have 2 boys and have felt that momentary sting of being without a girl..but that moment passes and I realize that my life wouldn’t be the same without these 2 boys in my life. I wouldn’t change it for the world!

    But, I also have to say that this is a public blog. Kelle has to understand (and I think she does) that if she puts thoughts and opinions out there, she is going to get thoughts and opinions back. Positive and negative. That’s part of life, part of blog writing. And just as Kelle has the freedom to write whatever she pleases, so do commenters. Everyone has the right to say they are offended and speak their minds too!! That’s what makes the world go round! (It doesn’t give you the write to be an a-hole..but it happens).

    Kudos to Kelle for handling the negative feedback with grace! And for writing such inspiring, thoughtful posts!!!!

  160. “And the minute you welcome one into your life, you inherit a thicker skin…because the bus will hit you plenty of times to the point you’ll think you damn near died. But you don’t. You pick yourself off the ground, dust off your knees…and move on. Because beauty awaits. The beauty that fills in all the holes and rough spots.”

    EXACTLY. You nailed it. Thanks for your words, and thanks for being so awesome :)

  161. Looooooooove the paragraph right before Nella’s pic. Love, love, love, love, LOVE. Preach it, girl.

  162. Amazing post Kelle! You always have such a way with words.

  163. I totally understood what you meant when I read your post, but when reading comments, I was surprised to see not everyone else did.

    There are things in life that won’t ever be, and you have to accept it. Like, what would my life be if I had married someone else? I wouldn’t have my daughter, and that would be awful.

    Like, I’ll never know what it’s like to be 19 all over again but experience university differently. But it’s just what it is. I can’t go back in time and change it. I have to accept it.

    I see exactly what you mean about how if someone had two boys they’ll never know what it’s like to have a girl (and vice versa!).

    I getcha!

  164. Linda MG in Calif says:

    I agree that Kelle ALWAYS handles any seemingly-negative comments with such GRACE. Of course, THAT does not surprise me at all. For I, and so many can see what kind of human being she is, from out visits here. We know what kind of soul and spirit she has. She always takes the higher road and never lowers herself when responding. She is amazing. And, yes, as someone wrote here, everyone has the right to say what they want and it does NOT give them the right to be an a-hole, but as it was said, it happens.

  165. Add: Not that it’s bad to have two boys, just that they’ll never know girls.

  166. ,,,like the commentor before me this weekend i too felt like the terminal that the buses were traveling in and away from,,,the bus impact was different but nonetheless the contact and force was ferocious, i felt the hot pavement on my skin and thought when will this all end,,,and then i said my prayers and while its not all better and i still have the tire tracks on my back, i will survive this hit as i’ve survived all the bus moments before this one and the others that will follow,,,enjoy your travels

  167. Anonymous says:

    Thanks for another great post. I’m due with number 2 in a few weeks and am feeling tired, overwhelmed and wonder every now and then what the heck are we going to do with 2 of them! I needed a dose of remembering the beauty! :-)

  168. Well said, Mama. Way to rise above!

  169. Anonymous says:

    We ask ourselfs that every now and then… “Is he doing / not doing that because he has Down’s?” then quickly remind ourselfs that he’s Max and what ever he’s doing is because he’s Max nothing else xxxxx

    Nella is Nella and any thing she does or doesn’t do is perfectly normal for Nella just as all our littles have their own ways of growing ….

    Thank you for sharing your heart with us I found your blog last week which was the week of my son’s first birthday and have been greedily reading on from and back before Nella’s story. It’s like you reach into my soul take my feelings, put them into words and make them beautiful xxxxxxxx

  170. karen johns says:

    wow, i love your thinking, its like you have taken my thoughts and feelings and published them!!! your girls are stunning x
    i have 6 sons, all adorable and last november i gave birth to my beautiful ruby! she is the jewel in my sparkling crown! ruby has ds and i have felt every emotion possible since her birth! she is 7 months now and adored by all!!! x

  171. I will never stop thanking you for this blog and your words…I “found you” in a time in my life when I needed perspective (shortly after learning of our baby’s vsd). I got it and then some. I happily and thirstily drink the Kelle koolaid. =)

  172. I am a teacher for students just like little Nella Bean. I go to work with the same attitude you are living. Who Cares…They have Down Syndrome… It’s Ok! And It’s OK b/c they are beautiful, sweet, silly, heart warming… the whole she-bang… Who Cares if they also have Down Syndrome.
    Keep lovin that little girl like there’s no tomorrow. And keep praising every one of her little accomplishments!! And think of it this way… At least she’s playing with her toy! What an accomplishment.
    WAY TO GO NELLA!!!

  173. Your story or approach to how you perceive Down Syndrome sounds much like an account made by another mom:

    http://www.ndsccenter.org/resources/package1.php

    Welcome to Holland
    by Emily Perl Kingsley

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

    “Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

    And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

    But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

  174. “Parenthood is hard and beautiful.”

    Kelle, you don’t know how much I needed this post today. I was having a battle of wills with my almost 2-year-old, and this reminds me to keep an eye on the bigger picture. I just love your attitude towards life and since finding your blog, I find that although we go through periods where the sun may not be so sunshine-y, there still is sunshine and we just have to find it. No matter what cards any of us have been dealt, the sunshine exists for all of us, through rainy days and all. Thank you.

    Nella is getting more beautiful by the day, by the way. Just perfect.

  175. http://www.ndsccenter.org/resources/package1.php

    Take a look at the “Welcome to Holland”.

  176. Leah is almost 3 1/2 years old and I’m still surprised by it some days.

  177. This is such a beautiful post… Thank you for sharing it with us…

    And that photo of Nella is gorgeous xx

  178. Thanks for charing this.

    There are easy and hard days with all things that are valuable in life. Doesn’t make the hard days any easier but I think sharing the hard, accepting the hard, moving through the hard helps. I hope it helps you like it help those who read about it! (I think it does…!)

    On another note, I finally found my phone charger and got your message! I will try to call you today or tomorrow. x

  179. Even though I’m nr 180 I wanted to drop a note saying I enjoyed reading this post because I think we all get these moments. It does not really makes sense why it hits us so hard, but it does! And it is somewhat surprising. I think you have two beautiful girls and you are a beautiful person too!

  180. Agreed agreed agreed. Your post is just what I needed today. You’re so right-there are an infinaite number of things we could let ourselves be disappointed about or wonder what it’s like to have or not have. Thank you for that perspective!

  181. Kelle~if you had given birth to a baby without Down Syndrome you wouldn’t have Nella, who so many of us love. When I see her soft,smushy little body & that beautiful face I just want to hold her & sniff her & smother her with kisses. Hopefully, days like today will be few & far inbetween. Love her, enjoy her & cherish her & that little supermodel Lainey. You have inspired me in ways you will never know. Much love to you. Enjoy your trip!

  182. I went to Key West when i was 19. Boy was I a hot Mamma back then!
    ha ha. I am still a hot Mamma with babies. My mom always told me that children with Down-syndrome are God’s angels.

  183. I love this post. Don’t let haters keep you from doing this again. You talk of thick skin, let them thicken your skin even more! And keep it coming!

    <3

  184. Thanks for this post! I thought I had already thought every profound thought that could be thunk in regards to DS, but you made me think about things I had never considered.

    And I don’t even understand what the anonymous commenters are objecting to. Those people must spend a lot of time being offended by people who have no idea they’ve offended anyone!

  185. I’ve been following your blog for a few months, and absolutely love your words and photos. So often I read what you write, and think, “Yes, that’s it exactly!” I had to comment about this post because it was my favorite of all. You really catch the heart of parenting–the vulnerability juxtaposed with the greatest joy. Also, LOVED what you wrote about the things we’ll never experience. My sister and I talk about that–how sometimes people throw pity parties b/c of what life experiences they/we perceive have been missed. But having some and missing others is the only sure thing! And that’s a powerful perspective–just love what you have! Your blog brightens my day. Your girls are beautiful.

  186. Hmmmm. I must say I’m a little shocked at some of the negative comments on this very honest and candid post. Especially to the anonymous commenter who said that Kelle was “obviously” disappointed that she didn’t get the picture perfect family. Funny…I always thought that Kelle’s point was that her family *is* perfect – for HER. I feel sorry for that anonymous poster…but hey. I guess it’s a reminder of the negativity and prejudices that she and Nella will face in the real world, right?

    Kelle, when I read Nella’s birth story, my first thought was…wow. I may never get my baby girl, but my two boys have been sent to me for a reason…they have been made perfectly for me, and I am blessed to have them. So I get where you’re coming from on that comparison! Nella could have been sent to parents who CHOOSE to despair of her syndrome and define her by it. Instead she was sent to you and Brett, who choose to rock it out every single day. Must respect for letting that bus hit you. We all need a little reminder every now and again, that life is real and hard and raw. How else would we appreciate the beautiful and amazing and magical moments?

    Don’t let anyone, especially anonymous commenters, make you feel bad for choosing to see the sunshine instead of the clouds. That attitude towards life is exactly why Nella was sent to you.

  187. Even if you NEVER wrote one single word about Nella, but kept every single picture on your blog, that in itself would be enough for the world to see that a baby with Down syndrome is a baby first. Because of your story, so many people are touched by what I thought that they would never get until they had a child with Down syndrome. It makes me incredibly happy that people like yourself choose to celebrate ALL of who Nella is!

    The idea of going back and forth of what is your child and what is that little extra within your child is normal. We all do it, I think. And I think we all come to the same place, too. I couldn’t imagine my Gabriel being anyone different than who he is.♥

  188. You have such a way of putting into [better, more insightful] words the very things I feel.

    I often have those types of inklings, the “what ifs” and wondering what things would have been like. But even though the grass sometimes seems greener on the other side, I’ll take my technicolor craziness because I know how insanely blessed I am.

  189. Nella is breathtakingly beautiful. Truly. She is so lucky to have you for a Mom!

  190. This was such a beautiful post. I just recently started following your blog, and I am completely amazed at your positive, upbeat attitude towards life. No matter how hard things are, you are always so positive! You really inspire me to try and be a happier person, and to see the good in every little thing in life, even if it’s not so good at all. When I read this post, it was the first time I have ever really realized that there are so many things that we as individuals will never know, so why dwell? There are so many other beautiful things in life that we DO know and WILL know, and that is what is important. Life is not about having everything you want, it is about loving and wanting everything that you already do have. Beautiful post! Thank you so much for this.

  191. Anonymous says:

    God is GREAT! HE knows who you are and what you need. HE chose YOU to be Nella’s Mommy because HE knows you will be a perfect Mother, and HE definitely has great plans for you and family.

    Kelle, when the bus hits you, please always remember “things happen for reasons and great plans soon to come in your life” – Life is short (we never know what is going to happen in next seconds). So enjoy every moments of your life with your two beautiful angels. Live the life as is…try not to worry so much, whether it’s normal or not normal. Embrace every single things Nella does…Nella is Nella; she has her own ways 😀 Try not to compare her with other kids. Nella is PERFECT in her own way!

    Hug!
    ~Mommy of 2 boys, who never wonder how it feels to have a girl~ 😉

  192. Anonymous says:

    Thanks for writing this. Like you, my family has moved forward and we are enjoying life. We are not defined by Down syndrome. So much so that I sometimes forgot to mention the fact that my daughter has Down syndrome and you should the surprise look on the faces when we show up somewhere new like the first day of dance class. “Oh, did I not mention Lexi has Ds? Well…she loves to dance (and has some killer moves) just like these other little girls!”

    But, I will say that we are always aware of its presence in our daily lives. Not because we are sad about it, but because it is such a part of our daily life and schedule…therapy sessions, medical appointment, special ed preschool, special needs trust, IEP’s, etc.

    Sometimes I am concerned that I have done our family a disservice by never talking about the difficult times. It seems I have done such a great job portraying that my daughter is just like everyone else (more alike than different campaign approach) that everyone now expects my daughter to keep up with peers, attend college, get married and live on her own. That very well could happen. Realistically, it may not.

    The bus still comes every now and then. It arrives when the other 4 year olds run quickly up the steps and pass my duaghter again and again on the big inflatable slide. She sweetly stands at the bottom and asks, “help please, mommy” and I wait to get the a-ok nod from the gentleman working the moonbounce slide. It arrives as the neighborhood children run around (including younger brother!) and just as Lexi finally catches up to them in hopes of participating, they have moved on to the next game. Oh, the sting! It hurts.

    That all being said, a down-syndrome-less Lexi would mean I wouldn’t have all the joy celebrating each small success. The gift of perspective. The understanding of what is important in life. My amazing daughter who I couldn’t love an ounce more!

    So, just wanted to say thank you for writing this. I love how you have shared your life and let others know Down syndrome is beautiful, not scary. I also appreciate the fact that you sometimes share the struggles…I feel it is important to educate others and bring about awareness of Down syndrome. TV and news always portray the high achievers and success stories, leaving many to not understand the small struggles of daily life.

    Love,
    Jill B (Overland Park, KS)
    http://lexiandluke.aboutmybaby.com/

    PS – Oh, and damn that low muscle tone. It makes all coordinated movements so very difficult. I always explain it as….try moving your arm in a perfect cheerleader or dance move right when it “falls asleep”. Tough, isn’t it?!!

  193. Anonymous says:

    Kelle, I just wanted to thank you for keeping it real. My son is 14 and I have been “hit” by that bus, many times. Lots of times when I least expected it. But you know what, the hits come further and further apart the older he gets. Life is what you make it and you figured that out much earlier in your journey than I did. It’s amazing what children can teach us. We all have things to worry about with our kids, making really good memories is what I try to worry about these days! They grow up way to fast!
    Pam-
    http://www.elijah.net (not a blogger yet, just a very old website)

  194. I think the bus hits every parent sometimes — it just comes wrapped in a different paint job. You are right in what you say. And we all love you for it. :-)

  195. Beautiful post Kelle! You have such an amazing gift for putting your thoughts into words.

    Have a great time on vacation making sweet memories for your little girls!

  196. So fabulous. This one also hit home with me. My son Kinglsey was born with Spina Bifida exactly one week before Nella and I found your blog a couple weeks after. Your posts about Nella and being Nella’s mom ring so true to me – the ups and the downs. I’ll never know what it’s like to be the mom of a quarter back, but I couldn’t care less anymore. The bus hits. But then it goes on somewhere else. Thanks for always reminding us that it’s okay to move on from the diagnosis and all the blah and just love and adore our children.

  197. As a teacher of seventh grade students, my teaching team and I are always preaching about diversity and tying it into lessons on bullying. We talk about how easy it is to “hide” behind a computer screen and type all the things we wish we had the guts to say to others in person but know we never would. Kind of like anonymous posters on here (and not all, because most anonymous posters truly just want to share their own inspirations). These are the ones that wouldn’t dare sign their name to the bottom of their comment or even use their own account that shows their name. It’s like middle school in the blogosphere. (That’s about as creative as my metaphors get…)

    On a lighter note–loved the blog. I think all of us get hit by our own bus from time to time. It doesn’t even have to be regarding children. I hindsight I realize that the time I was hit by the bus was when my husband and I were going to a fertility center trying to get pregnant only to find out that in vitro was our only option, and that even looked slim. So, we cried, vented, took out a loan, and persued the treatments. By God’s grace, after our loan was approved we found out we were pregnant “au natural”, and were able to use the loan $ for other bills. During my pregnancy we were so ecstatic we turned down all testing knowing we would love whatever God blessed us with, of course never thinking that we would actually have a baby with special needs. But regardless, WE WOULD HAVE NOT GOTTEN TESTING ANYWAY. Three days after Cameran Leah was born the attending pediatrician suggested she get tested for Ds. We were shocked. The worst part was a nurse that came in later that evening. After telling her we sent out a blood sample for Downs her response was something like, “Oh, you didn’t know before she was born?? Ohhhhhhhhh, you didn’t get any testing…” It ticked me off so badly, because her voice inflection basically implied what she really meant–that we shouldn’t have brought our little peanut into this world had we known she would be have Ds. So no, to those who wonder, there are a lot of families out there that do not choose testing, for a variety of reasons. Yes we were surprised, but to look back and know that we were blessed with a child period, is the miracle we are most thankful for.

    Cami is our first and we don’t know anything other than weekly interventions from OT, PT, DT, and additional doctor appointments. Will we have more children? Likely not naturally, as it was so difficult to have Cameran, but we have looked into adoption. Sure, I mourned and let the darn bus hit me hard and rob me of the first few weeks of Cami’s little life, but I too dusted myself off and know that I am thankful for the family God has chosen for me.

    You’re a rockstar,

    Jen @ lovingpeanut.blogspot.com

    PS Cameran is finishing up steriod treatments for infantile spasm seizures and is still jerky with her movements–to the point that my husband has nicknamed her hands the “Petter” (right hand) and “Beater-Upper” (left hand).

  198. As a teacher of seventh grade students, my teaching team and I are always preaching about diversity and tying it into lessons on bullying. We talk about how easy it is to “hide” behind a computer screen and type all the things we wish we had the guts to say to others in person but know we never would. Kind of like anonymous posters on here (and not all, because most anonymous posters truly just want to share their own inspirations). These are the ones that wouldn’t dare sign their name to the bottom of their comment or even use their own account that shows their name. It’s like middle school in the blogosphere. (That’s about as creative as my metaphors get…)

    On a lighter note–loved the blog. I think all of us get hit by our own bus from time to time. It doesn’t even have to be regarding children. I hindsight I realize that the time I was hit by the bus was when my husband and I were going to a fertility center trying to get pregnant only to find out that in vitro was our only option, and that even looked slim. So, we cried, vented, took out a loan, and persued the treatments. By God’s grace, after our loan was approved we found out we were pregnant “au natural”, and were able to use the loan $ for other bills. During my pregnancy we were so ecstatic we turned down all testing knowing we would love whatever God blessed us with, of course never thinking that we would actually have a baby with special needs. But regardless, WE WOULD HAVE NOT GOTTEN TESTING ANYWAY. Three days after Cameran Leah was born the attending pediatrician suggested she get tested for Ds. We were shocked. The worst part was a nurse that came in later that evening. After telling her we sent out a blood sample for Downs her response was something like, “Oh, you didn’t know before she was born?? Ohhhhhhhhh, you didn’t get any testing…” It ticked me off so badly, because her voice inflection basically implied what she really meant–that we shouldn’t have brought our little peanut into this world had we known she would be have Ds. So no, to those who wonder, there are a lot of families out there that do not choose testing, for a variety of reasons. Yes we were surprised, but to look back and know that we were blessed with a child period, is the miracle we are most thankful for.

    Cami is our first and we don’t know anything other than weekly interventions from OT, PT, DT, and additional doctor appointments. Will we have more children? Likely not naturally, as it was so difficult to have Cameran, but we have looked into adoption. Sure, I mourned and let the darn bus hit me hard and rob me of the first few weeks of Cami’s little life, but I too dusted myself off and know that I am thankful for the family God has chosen for me.

    You’re a rockstar,

    Jen @ lovingpeanut.blogspot.com

    PS Cameran is finishing up steriod treatments for infantile spasm seizures and is still jerky with her movements–to the point that my husband has nicknamed her hands the “Petter” (right hand) and “Beater-Upper” (left hand).

  199. As a teacher of seventh grade students, my teaching team and I are always preaching about diversity and tying it into lessons on bullying. We talk about how easy it is to “hide” behind a computer screen and type all the things we wish we had the guts to say to others in person but know we never would. Kind of like anonymous posters on here (and not all, because most anonymous posters truly just want to share their own inspirations). These are the ones that wouldn’t dare sign their name to the bottom of their comment or even use their own account that shows their name. It’s like middle school in the blogosphere. (That’s about as creative as my metaphors get…)

    On a lighter note–loved the blog. I think all of us get hit by our own bus from time to time. It doesn’t even have to be regarding children. I hindsight I realize that the time I was hit by the bus was when my husband and I were going to a fertility center trying to get pregnant only to find out that in vitro was our only option, and that even looked slim. So, we cried, vented, took out a loan, and persued the treatments. By God’s grace, after our loan was approved we found out we were pregnant “au natural”, and were able to use the loan $ for other bills. During my pregnancy we were so ecstatic we turned down all testing knowing we would love whatever God blessed us with, of course never thinking that we would actually have a baby with special needs. But regardless, WE WOULD HAVE NOT GOTTEN TESTING ANYWAY. Three days after Cameran Leah was born the attending pediatrician suggested she get tested for Ds. We were shocked. The worst part was a nurse that came in later that evening. After telling her we sent out a blood sample for Downs her response was something like, “Oh, you didn’t know before she was born?? Ohhhhhhhhh, you didn’t get any testing…” It ticked me off so badly, because her voice inflection basically implied what she really meant–that we shouldn’t have brought our little peanut into this world had we known she would be have Ds. So no, to those who wonder, there are a lot of families out there that do not choose testing, for a variety of reasons. Yes we were surprised, but to look back and know that we were blessed with a child period, is the miracle we are most thankful for.

    Cami is our first and we don’t know anything other than weekly interventions from OT, PT, DT, and additional doctor appointments. Will we have more children? Likely not naturally, as it was so difficult to have Cameran, but we have looked into adoption. Sure, I mourned and let the darn bus hit me hard and rob me of the first few weeks of Cami’s little life, but I too dusted myself off and know that I am thankful for the family God has chosen for me.

    You’re a rockstar,

    Jen @ lovingpeanut.blogspot.com

    PS Cameran is finishing up steriod treatments for infantile spasm seizures and is still jerky with her movements–to the point that my husband has nicknamed her hands the “Petter” (right hand) and “Beater-Upper” (left hand).

  200. oh kelle..you have to be pulling your hair out at this point. so from those of us who totally get what you were sharing with us we bow to you.

    anonymous…dude…give it up…you just aren’t getting what kelle means…YUCK..seriously???? that is something my seven year old would say! hahah…now you are making me laugh..seriously i can’t stop giggling over your last post…and dude i am brave enough to go full ID on what i am saying…just saying friend.

  201. You are my sunshine, my only sunshine…well not “only” sunshine, ’cause I need to include my family plus peeps, chicka chicka, you make me happpppppy, when skies are grey, and even when they’re noooooot…..you’ll never know deeeeeear, how much I love you, but not in a creepy stalker waaaaaay, please don’t take my sunshine away.

    Remixed version, made specially for you…I’m singing it out loud right now in the hopes you’ll hear me, although snot plug in left nostril is restricting air flow, hence affecting overall sound quality.

  202. Wonderful post! Your writing speaks to my soul! Thank you so much for all you do …

    PERFECTION! That’s all I see when I see my J and your Nella. I don’t see Down syndrome. All I see is THEIR BEAUTY, I see and feel PURE LOVE! They are not defined by Down syndrome. We CELEBRATE them for who they are and we CELEBRATE all the HAPPINESS they bring to our lives! We CELEBRATE life!

    You know Nella Cordelia IS beautiful and perfect just as she IS. All that matters is that she IS growing healthy and strong, she IS loved and she IS learning something every day … Nella by BEING HERSELF will teach you all you need to know about who she IS and who she IS becoming … Follow HER lead … She knows the way … Nella will continue to take you higher … All is well … Everything is going to be OK~

    I say make friends with the bus. Every visit is an initiation, an invitation to go deeper. Every hit is a wake up call. The bus is challenging you to grow bigger, stronger, wiser. You can do this, you are doing it! C:

    Sending lots of positive loving energy your way~

    “Emotions, we could say, are the blood shed by ego -they start to flow whenever we are touched, whenever the defensive shell around the heart is pierced. Trying to control them is an attempt to keep this shell from cracking. Letting ego bleed, on the other hand, opens the heart. Then we rediscover ourselves as living beings who are exposed to the world, interconnected with all other beings. Letting go of judgment and story lines and feeling this naked quality of being alive wakes us up and nurtures compassion for ourselves and others.” -John Welwood

  203. I know the feeling of the bus hitting you…only the bus that hits me is the reminder that my parents are no longer with me (my mom passed when I was 6 and my dad when I was 9). It’s hard when I find myself in situations wondering what I am going to do next and not having a parent to call to ask what the heck to do I do or even just to bum a few bucks off of until I can get back on my feet. Yes, yesterday the bus hit me when my car broke down..er, caught on fire to be more realistic…, the one I need to get me to my unpaid Master’s level internship to the rest of the summer. So now it is scraping together a few pennies, hoping my car is salvageable and that my boyfriend can do some handy work, and counting my blessings that the situation is not as worse as it could have been even though there are parts of me that are longing for the comfort a parent can give during these challenging times. Yes, we don’t always know how to deal with the hand the is dealt to us, but we find our own ways to cope, and our own ways to heal and thrive in the end. Have a wonderful time at the beach Kelle, enjoy the gift you have before you, in the good and the bad. Blessings!

  204. thanks for being so real Kelle. I can not even begin to imagine how hard it must be to write your heart and then have people tear your words apart… thank you for never “lightening up” your message and your honesty. You are such an inspiration and are constantly putting me in check and making me stop and “enjoy the small things”. Remember for every negative comment there are thouands more that love and adore you!! keep saying it just like it is!

  205. I totally understand the stopping, mourning for a minute, and moving on. My daughter and I couldn’t get the nursing thing to work out, and so now whenever I see people who are successful at it I have that little twinge of sadness that that wasn’t in the cards for me. I don’t know if that will ever go away. But you know what? I have an amazing daughter. Nursing or not nursing won’t change a damn thing about that!

    Lurve me some Key West… bet you can get some amazing pics of the girls at Blue Heaven.

  206. Brit baby says:

    What an amazing post!
    This is the first comment I’ve left since reading Nella’s birth story and I’m hooked.
    My gorgeous 22 month old has DS and I can relate to the bus coming round from time to time. I’m starting to learn to step out of the way a little quicker some times it hits but very rarely do I stay down for long.

    When I found out about my babes “little extra” I will never forget my paed’s words of “it can be the making of some families” how true he was and I can see by your beautiful words and photographs of your divine family that maybe you’re on your way too, taking it day by day, sometimes faster, sometimes slower but getting there.

    I noticed some tricky comments earlier but please don’t let that stop you expressing how you feel. There are some people who will never get it and sadly find it harder to get “there”.

    Looking forward to your next post and pictures of your beautiful girls.

    Brit baby

  207. Your post struck a chord with me today. Enough so, that I came out of lurking to comment.

    I’m in the middle of deciding on renovations for our house. I kept catching myself saying, “Jeez, I wish we had the money for xyz.”

    My kids get home from the park with their dad and start tracking sand into the house I just cleaned and I say, “Jeez! I wish you guys would NOT make a mess!!”

    My husband’s baseball game had a change in schedule and is at 6:30 instead of 9:30 and I say, “Jeez, I wish you’re activities wouldn’t interfere with mine!”

    Then I read your post. It made me give my head a shake and say, “I need to stop wishing for what I don’t have and start appreciating what I do.”

    Will your post make me a 100% altruistic person? No, probably not but if reading your wicked, awesome, kick-ass blog give me a headshake every now and then, well, sign me up, homeslice.

    Thanks Kelle.

    Brandi

  208. Kelle –

    I’ve wanted to comment since I read your passport post last week…I was honestly surprised that you were writing about Down syndrome…I’d better explain…

    Since Nella’s birth I’ve read your blog, enjoying your journey as a parent and especially the way you capture life through your beautiful photos. I was especially thrilled that you were sharing sweet Nella with the world. With each photo proclaiming: “This, dear world is what Down syndrome looks like! And yes, she is beautiful.”

    But the cynic in me often wondered why you never really mentioned DS. It was like ignoring the “elephant” in the room. And this is coming from a mom who most of the time is happy to be the head cheerleader for Team Down syndrome. Down syndrome is way cool! GO TEAM!

    But we ALL get hit by the bus. We all feel like no one else could possibly understand where we are coming from no matter our circumstances. For me it often has nothing to do with DS. For me it’s the darn things that come with it… mainly the fear of the unknown.

    I love every little bit of our son Charlie and every little cell in his body has Down syndrome. But as a mother, this reality is mine and mine alone. And truthfully, this reality sometimes rocks me to the core.

    Maybe we all do this, special needs child or not – glossing over the uncomfortable parts of our days. Those moments in life when we are out of our element; While touring the “short bus” that will take my then three year-old Charlie to school in the fall. Observing a special needs preschool classroom. Moments of comparison. What could have been.

    Thankfully I don’t dwell on the uncomfortable. I love my Charlie just as he is.

    But I also have this part of me that chugs along like the little engine that could. “I think I can, I think I can, I think I can.” I sometimes worry that if I’m not constantly repeating that mantra to myself then yes, it is all going to fall apart. Because I know the world that we live in. A world where to be honest, our children are not welcome. And whether it’s to protect my own little family or to give hope to another, I want to break out my pom-poms and shout out: Yes, it is hard but there is so much good – please, please don’t forget the good!

    There is beauty in this often bumpy journey. And while I might occasionally throw up my hands asking “why!?” I would never change a thing. And so we continue, raising up our little family. Doing everything we would do extra chromosome or not. Going on vacation, enjoying a trip to Starbucks, visiting the park, taking swimming lessons and yes, going on picnics.

    So enjoy that vacation, hug that sweet Nella, continue to embrace and share the sweet life with all of its twists and turns.

  209. Kelle –

    I’ve wanted to comment since I read your passport post last week…I was honestly surprised that you were writing about Down syndrome…I’d better explain…

    Since Nella’s birth I’ve read your blog, enjoying your journey as a parent and especially the way you capture life through your beautiful photos. I was especially thrilled that you were sharing sweet Nella with the world. With each photo proclaiming: “This, dear world is what Down syndrome looks like! And yes, she is beautiful.”

    But the cynic in me often wondered why you never really mentioned DS. It was like ignoring the “elephant” in the room. And this is coming from a mom who most of the time is happy to be the head cheerleader for Team Down syndrome. Down syndrome is way cool! GO TEAM!

    But we ALL get hit by the bus. We all feel like no one else could possibly understand where we are coming from no matter our circumstances. For me it often has nothing to do with DS. For me it’s the darn things that come with it… mainly the fear of the unknown.

    I love every little bit of our son Charlie and every little cell in his body has Down syndrome. But as a mother, this reality is mine and mine alone. And truthfully, this reality sometimes rocks me to the core.

    Maybe we all do this, special needs child or not – glossing over the uncomfortable parts of our days. Those moments in life when we are out of our element; While touring the “short bus” that will take my then three year-old Charlie to school in the fall. Observing a special needs preschool classroom. Moments of comparison. What could have been.

    Thankfully I don’t dwell on the uncomfortable. I love my Charlie just as he is.

    But I also have this part of me that chugs along like the little engine that could. “I think I can, I think I can, I think I can.” I sometimes worry that if I’m not constantly repeating that mantra to myself then yes, it is all going to fall apart. Because I know the world that we live in. A world where to be honest, our children are not welcome. And whether it’s to protect my own little family or to give hope to another, I want to break out my pom-poms and shout out: Yes, it is hard but there is so much good – please, please don’t forget the good!

    There is beauty in this often bumpy journey. And while I might occasionally throw up my hands asking “why!?” I would never change a thing. And so we continue, raising up our little family. Doing everything we would do extra chromosome or not. Going on vacation, enjoying a trip to Starbucks, visiting the park, taking swimming lessons and yes, going on picnics.

    So enjoy that vacation, hug that sweet Nella, continue to embrace and share the sweet life with all of its twists and turns.

  210. Beautifully said…that’s all!

  211. Anonymous says:

    That was beautiful. I had tears streaming down my face. Thank you for feeling comfortable enough and brave enough to share. I know there will always be people trying to twist what you say or disagree. Thank you for not letting that get in your way.

  212. Anonymous says:

    That was beautiful. I had tears streaming down my face. Thank you for feeling comfortable enough and brave enough to share. I know there will always be people trying to twist what you say or disagree. Thank you for not letting that get in your way.

  213. Anonymous says:

    Not a DS thing! You worry yourself and even if it was… Who cares :) She is Nella and is amazing…. As a nanny for over 10 years I have seen many babies do just what you described.

  214. Beautiful Kelle. Thank you for your honesty. And yes, parenthood is like getting hit by a bus over and over and over.

  215. kelle… i look forward to each and every one of your posts. your blog inspires me – not because you have gorgeous photos or creative ideas or because you have a baby with ds but because of your essence.

    you are a beautiful woman kelle and what you do is so important. I truly appreciate you sharing this lovely life with us.

    p.s. you’ll get haters – especially because you are happy. you can’t win.

  216. Carolina says:

    Hi Kelle, I just wanted to say I can totally relate to your post today, we are one of those families like your family!! The difference is I only have one son, my first baby… and I don’t have a sibling to compare him with, and I thank God for that now because I don’t want to compare him with no body! We also try every day to live with out thinking too much about it, but you know at least once a week there is something that reminds me about that extra chromosome, a random little thing… and then it happens: either I cry, or I get sad, and I ask questions… minutes later I’m fine again. I guess is going to be like that for a while, since my baby is only a few months older that your Nella. We have a long road ahead of us in this journey!
    I wanted to recommend you a little secret place I visit once in a while that has become my “go to place” when I have questions Down Syndrome related. Is called The down Syndrome Board at BabyCenter.com I’m not a big fan of support groups, groups therapies and none of that, so that’s why this works for me, I don’t see no body’s face and no one sees mine, I can read and read about situations of other mommies with their little ones and get informed and yes occasionally I have post something about my son. This place has helped me a lot! Maybe it can answer some of your questions some day!

    By the way, your daughters are just beautiful!!! But Nella, there something about her eyes, is amazing how perfect she looks!! I hope one day we could meet, I live in SF also!

  217. Kelle, I know what you mean by that bus, but trust me it hits with less force each time and the times in between stretch out longer and longer. I have a 9 yr. old son who just happens to have down syndrome. Noah is so much more than that, that it does take a back seat or actually a couple of cars behind! Your beautiful, precious nellabean is a child first
    and the rest is just,,,,,the rest. And your basic dreams for your children don’t change because of any diagnosis, which is to love, be loved, be healthy and be happy. All those dreams have been realized already and will continue to florish! On another note, I’m so glad to have discovered your jewel of a blog. I love to pour a cup of coffee with the ever favorite creme brulee creamer,sit back, relax and log on to your life uplifting words! Nothing better than this! Thanks for all of your words, insight and lovely family. What a wonderful world this is!!!!

  218. Jill B- usually Kelle makes me cry… today your comments did! I want to read more about Lexie… I tried your site, but it looks like we need a password.

    Kelle- your post was so honest and raw and I am so shocked that people are offended.

    I am a mom of five boys… and now my tubes are tied due uterus complications. Of course I love all my boys, but of course those thoughts of no tutus and no pink toe nails and no pig tails come into my mind. I just hope all of my daughter-in-laws like me. :-)

    But we all have a story. And it is our story that makes us who we are and who we are not.

    So I get what you are saying.

    I love your blog. I love reading about Nella. I love the pictures and watching her grow. I love sharing your blog. You inspire me! Nella inspires me. Thank you!

    crystalandcomp.com

  219. My second oldest brother (Adam) has Down syndrome :) I don’t remember anyone ever telling me that “he’s different”… & I like that. I love asking my mum questions about him when he was little. He’s come such a long way & he still surprises us all the time (he’s very good at swimming & basketball.) My family has met other families (that aren’t defined by D.S., but it’s there) & have become good friends. I’m expecting my 1st baby in Oct (a boy named Zayn Frederick) and Adam is ecstatic about becoming an uncle & sharing his middle name with him! I can’t wait to place Zayn in his arms & see Adam smile that very awesome Adam smile :)

    So, even though, I don’t know what it’s like to have a child with DS or any type of ‘disability’, I know what it’s like from the sibling perspective :) It’s nothing different from my other ‘normal’ brother. Steve & I might have been protective of him, but all of our friends treated Adam the same as our family. How lucky we are to love someone with an extra chromosome! I love reading your blog.

  220. Nella is SUCH a little honey!! :)

  221. {{{{{{HUGS}}}}}}

    You’ve come a long way baby!! I for one am very proud of you!!

  222. We all have those unkowns….and we are all wise to recognize that there’s ALWAYS someone whose situation is “worse”than ours. But that doesn’t lessen the blow of that bus that blindly came around the corner. May those days be few…very very few. As always, thoughts prayers and warm blessings…enjoy the Keys!

  223. Dear Anon ,
    I am so glad Nella was born into Kelle’s family, they love and appreciate who she is!! How do you know what is or isn’t in Kelle’s house in regards to what needs her daughter may have?? Have you been there?? Have you even read her blog from beginning to end?? Maybe it isn’t all “sunshine & roses “, but who’s life is??. Your life, and your attitude about how you live it are up to you, and I, for one, think those kids are lucky they have the parents they do.

  224. Kelle…I love your blog! Thank you for sharing your gift. Your way with words is amazing. We all have a bus with our imprint on it. So friggin what! You are so right! Oh and thanks for the office chair disco groove to “Got To Be Real” :).

  225. I love it when you admit your vulnerability. It’s what girlfriends do, and we’re all here for you, and each other. About the time I thought my children may be the death of me, one of them would crawl in to my bed and snuggle up with “I love you’s” and all of the bus hitting was gone just like that, until the next time. The miracle of unconditional love.

  226. Kelle, I read your blog all the time but have never commented before… the times I have tried, it didn’t post.
    I can actually remember when I first read your blog- Nella’s birth story led me here, but I read through past entries – I remember being SO angry for you. It just seemed incredibly unfair that you- someone so happy, and who was such a good mom- would have to go through something that hard.
    But now… like you said, the title of the entry did surprise me. I forget she has Down Syndrome, too. I look at her picture all the time on your blog, and I always think about her pretty blue eyes and her amazing outfits, and how sometimes she looks like Lainey. I never think about Down Syndrome. Looking back now, it seems very silly that I was so angry on your behalf.
    Anyway, I think you rock…and that your family is beyond awesome. I think its pretty sad that people find something so terrible with you wanting to see things in a positive light. Makes me feel kind of sad for them, actually. I hope y’all have a wonderful trip!

  227. Kelle, I too love your blog. A couple of things : as for comments saying Nella doesn’t look like she has Down syndrome, that’s not unusual. My 7 year old didn’t look much at all like she had DS until at least after 6 months of age. I have professional photos on the wall taken when she was right at 6 months and now they look like they were of a different baby than how my “baby” looks now. No matter because my 7 year old is absolutely gorgeous if I do say so myself!

    My hit by the bus moments come now and then when I project out to her future. I’m okay with the here and now, even though challenges do present themselves a little too often at times; but the thought of who will care for her and where she will be and if she will be happy and have a full life when I’m gone, sends me into a cold sweat. I do fall victim to those thoughts now and then but try to steer right back out of them as quickly as possible. Seeing blogs like yours and the many others written by Moms & Dads who obviously adore their kids and would lay down their lives for them gives me such hope for the future. All these strong, outspoken and supportive families will be a huge force for good for all the people with Down syndrome and other types of disabilities going forward.

    Keep up the good work and God bless!

  228. Hi Kelle – I have two boys…my 6 year old has DS – – the bus hits me all the time Girl! I don’t know if you are a person of Faith, but sometimes all you can do is PRAY! I pray for peace, peace in my life, peace in the world, peace for my boys and their lives – -i’ll pray for peace in yours – you are doing a great job at it, it seems! I love reading your insights and looking at your amazing photos!

  229. There are so many ups and downs in the journey of loss. I love how you are embracing both of them.

    Thanks for sharing your heart with us.

  230. Anonymous says:

    Hi Kelle,
    I wouldn’t worry about the choppy movements thing. My son has DS and he never did that. I think it’s just a Nella thing.
    In our family, DS is way back there, and I actually get annoyed when people do bring it up, as the DS is just a very small part of Pete. He’s just our dear little, demanding, funny, grumpy little guy.
    By the way, who says you will never have triplets? :)
    Have a great day,
    Bridget and Pete

  231. Anonymous says:

    Hi Kelle,
    I wouldn’t worry about the choppy movements thing. My son has DS and he never did that. I think it’s just a Nella thing.
    In our family, DS is way back there, and I actually get annoyed when people do bring it up, as the DS is just a very small part of Pete. He’s just our dear little, demanding, funny, grumpy little guy.
    By the way, who says you will never have triplets? :)
    Have a great day,
    Bridget and Pete

  232. It’s OK to have “those days”. Fortunately, they will become less and less and while the reminder of Down syndrome is always there, it usually sits on the back-burner, life goes on and you enjoy, yes, the small things… Nella is beautiful… such depth in her eyes. That’s what I love about my little guy who’s already 2 1/2. His eyes are truly the window into his soul and, even though he can’t speak his needs, his eyes speak volumes.

  233. “Parenthood is hard and beautiful. Scary and rewarding. Sad and Happy. All at once”

    Truest statement I’ve heard all week. You really hit the nail on the head there.

  234. BEST. EVER.

  235. BEST. EVER.

  236. This comment has been removed by the author.

  237. Kelle-

    Back when you first began to tell this story of Nella and Down syndrome, I found your lovely little space through Donald Miller’s blog.

    I must say your words strike me deeply very often, but today I thought I would leave you a little lovin.

    Let me tell you – you and your family are telling a good story, a very good one. A beautiful, honest, strong one! And I’m convinced, like every story, that the one you are living must be told. This world desperately needs your life-giving words, your fight, your bit of conquering what otherwise would be lost.

    You are courageous beyond words. There are obviously many who will continue to journey with you – I know I look forward to it!

    Peace to you.

  238. Kelle – Nella is just pure perfection to me. And although this may sound strange, you make me want to have a baby with down syndrome. I hope negative comments don’t ever stop you from posting! I triple love your blog. Also, can you tell me where you stay in Key West? I am due for a vacation in Florida but it is so hard to find a place that you will love on the internet. Thanks.

  239. Wiping away tears from reading today’s blog…. Thanks for keeping it real. Now for the book title “A million Things You’ll Never know”.

    The infertility bus likes to hit me like a brick wall. Yes, I have a child, but I was suppossed to have more. “Suppossed to”? Yes, that was my plan. I’ll never know what it is like to have more than one child. It stings. I am 40 now and it really is definitive that I wont know. Each friend/family memeber that gets PG stings so bad. I cry for a few days, and I pick myself up and dust myself off. But, I do know what it is like to experience a miracle. :o) That keeps me going. And I do deal with a child who has a learning disability. Who talked later than her peers. She has ADD and recieves special education at school. But, she is the kindest, most compassionate and beautiful child and I would not trade her disabilities for nothing. It creates who she is and shows others that she can overcome her hurdles and shine.

    :o)

  240. Kelle, I have already commented but I feel like I needed to tell you what an inspiration you are to ALL moms (and dads) out there!

    Please don’t let the callous words of some who chooses to stay “anonymous” bring you down or stop you from writing from the heart. It is what makes you so real and so lovable!

    Please enjoy your vacation without thinking about any of that persons negativity and keep on inspiring!

  241. Wonderful post, Kelle. I check your blog so often and yet somehow you always exceed expectation and you can still surprise us. I know we will learn a lot more, and I learn a lot from your commenters too.

    I think you look at it just right. For every thing you might have liked to experience that you won’t – and the list is endless for all of us – you could just as well imagine something you do have and love being taken away or un-experienced (if that is a word!). Everything we either do or don’t have is the result of a complex and sometimes random web of circumstance, and for every life you live or imagine there are millions of others you have to let go.

    You’re so right that Nella is not defined by having Down’s syndrome, she is just who is she is, a little person with a whole range of characteristics. She has such beauty and intelligence and depth in her eyes, it is going to be wonderful watching her grow and getting to know her. I admit before I read your blog I might have thought that I would often look at someone with DS through the lens of their condition, but I don’t think that at all any more. I can see from the way you live your lives that when you know a person, you realise that something like that is just one thing about them, not the whole story at all, and not stopping them being a perfect child.

    When I watch parents I get the feeling that whether you get boys or girls you roll the dice when you have them, and you love them unconditionally because whatever they are, they are yours. I and hope that if I have children I’ll feel more able to dust myself down just because when you are a parent, you have to. I certainly rely on my mum to do that, and believe me she has met that bus enough times now for me to know that she will always get back up for me as long as she can.

    Sorry for the long comment, you’ve hit on an interesting issue here!

  242. Kelle,
    I would like to thank you for bringing us women out here into your world. I find your blog so inspiring and I dont have any children…its so raw but great at the same time. Your phtoography is also AMAZING, I only wish you lived closer so you could take pictures where I live! I have one question I have been DYING to know….how do you manage your blog/website? I am setting one up of my own, I have a few blogs that I would love to have all on one page like you do here, but was curious as to what you mange with? Any help would be appreciated, my email is chocolatierbecky@gmail.com if that would be easier. Thanks for your inspiring words, and again thanks for letting us in! Your kids as you know are adorable!
    Becky
    Delaware

  243. I just tried to leave a comment and it told me the requested URL was too long to process! So that told me! You’ll just have to trust me it was a good one!

    I agree, for everything we would like to experience that we won’t – and the list is endless for all of us – we could just as well imagine something we do have and love taken away.

    You’re so right that Nella is not defined by having DS, she is just who she is, a little person with a whole range of characteristics. And such beauty and depth and intelligence in her eyes watching her grow and getting to know her is going to be fabulous. I admit that before I read your blog I might have expected I’d regard someone with DS through the lens of their condition but I don’t think that at all any more. I can see from the way you live your lives that when you know a person you realise that it is just one thing amongst many about them, and not stopping them being a perfect, truly perfect, child.

  244. As a mom of two boys, my youngest being my 19-year old son who happens to also have Down Syndrome I love that you are already able to forget that your daughter has DS and live life as you know it…the more that you can live life as you know it each and every day the better off BOTH of your girls will be (and all you come into contact with)!

    I have always felt that my son was given to us so that we could educate people…that education began by having him fully included in general education classes – everyone (him, his classmates, his teachers, etc) benefited from his presence. Now, as a young adult, his wishes are to one day be married and live independently – we have chosen to support him in pursuing his life’s goals and dreams…just as we are supporting our older son as he pursues his life’s goals & dreams.

    Life is a wonder, it never ceases to amaze & inspire – enjoy this time as time certainly does fly by…and keep inspiring others with your grace, wit & wisdom!

  245. Benjamin did that! We called him “hammer hand” because it was so cute when he did it and had this expression of glee on his face — we couldn’t help but laugh and “whoa dude” at him…he was our first, and I think it was a blessing because we tended to just marvel at him, more because we created this little piece of work, and more like, willya look at what is up his sleeve now! He is eight now, and we look back at those years and just miss them so much. He is still such a character and loves giving affection and seeking comfort from his parents, but with a diagnosis of autism and some kinks in his behavior has been making us reminisce a little more than usual. When I see your pics of Nella, it just makes me miss my squishy little Ben so, so much.

  246. I think the choppy movement thing is normal. My 11 month old has done that in the past and she doesn’t have DS. As far as anonymous, he/she just doesn’t get it and I can’t think of a clearer way to explain what you meant. Maybe he/she’s just having a bad day. I love your honesty and openess. Thank you!

  247. Anonymous says:

    HONEY….GO BACK AND READ YOUR THURSDAY, DECEMBER 20, 2007 POST!! Best Wishes….MiMi

  248. Well, from a perfectly wonderful getaway here in Key West, enjoying Nella “fastened” to me with the Bjorn while people watching in this colorful kaleidoscope of society, I read the comments tonight and cannot help but appreciate the broad spectrum of spirits and perspectives. They are all good and I know Kelle appreciates them all. I do think that words without the full connection of the person delivering them often fall short in really communicating. Kelle has, from those first moments in the delivery room, DECIDED to receive Nella as our gift. Nella is not defined by Ds, nor is her family. She is ours…and we are so blissfully enjoying all she is, we really don’t focus on a syndrome that is only part of her. Call us crazy, naive, out of touch–but we just love our baby…she is perfectly Nella. I swear she knows me…and I am so impressed with her little responses to everything. Get her in the pool and she kicks and strokes like a little Esther Williams…and some of you don’t know who she is! Well, comment on–we actually enjoy them all!

  249. my husband and i do that all the time with zachary… except he’s our first child so we never know whether it’s the DS or just him being a baby. that bus sneaks up on me more often than i’d like to admit. and you’re right, the title did surprise me, the same as it does when it’s talked about in our house… so funny how two little words have so much weight at times. so happy you had a happy 4th! jami

  250. Well, from a perfectly wonderful getaway here in Key West, enjoying Nella “fastened” to me with the Bjorn while people watching in this colorful kaleidoscope of society, I read the comments tonight and cannot help but appreciate the broad spectrum of spirits and perspectives. They are all good and I know Kelle appreciates them all. I do think that words without the full connection of the person delivering them often fall short in really communicating. Kelle has, from those first moments in the delivery room, DECIDED to receive Nella as our gift. Nella is not defined by Ds, nor is her family. She is ours…and we are so blissfully enjoying all she is, we really don’t focus on a syndrome that is only part of her. Call us crazy, naive, out of touch–but we just love our baby…she is perfectly Nella. I swear she knows me…and I am so impressed with her little responses to everything. Get her in the pool and she kicks and strokes like a little Esther Williams…and some of you don’t know who she is! Well, comment on–we actually enjoy them all!

  251. Well, from a perfectly wonderful getaway here in Key West, enjoying Nella “fastened” to me with the Bjorn while people watching in this colorful kaleidoscope of society, I read the comments tonight and cannot help but appreciate the broad spectrum of spirits and perspectives. They are all good and I know Kelle appreciates them all. I do think that words without the full connection of the person delivering them often fall short in really communicating. Kelle has, from those first moments in the delivery room, DECIDED to receive Nella as our gift. Nella is not defined by Ds, nor is her family. She is ours…and we are so blissfully enjoying all she is, we really don’t focus on a syndrome that is only part of her. Call us crazy, naive, out of touch–but we just love our baby…she is perfectly Nella. I swear she knows me…and I am so impressed with her little responses to everything. Get her in the pool and she kicks and strokes like a little Esther Williams…and some of you don’t know who she is! Well, comment on–we actually enjoy them all!

  252. Well, from a perfectly wonderful getaway here in Key West, enjoying Nella “fastened” to me with the Bjorn while people watching in this colorful kaleidoscope of society, I read the comments tonight and cannot help but appreciate the broad spectrum of spirits and perspectives. They are all good and I know Kelle appreciates them all. I do think that words without the full connection of the person delivering them often fall short in really communicating. Kelle has, from those first moments in the delivery room, DECIDED to receive Nella as our gift. Nella is not defined by Ds, nor is her family. She is ours…and we are so blissfully enjoying all she is, we really don’t focus on a syndrome that is only part of her. Call us crazy, naive, out of touch–but we just love our baby…she is perfectly Nella. I swear she knows me…and I am so impressed with her little responses to everything. Get her in the pool and she kicks and strokes like a little Esther Williams…and some of you don’t know who she is! Well, comment on–we actually enjoy them all!

  253. also, to comment on todays post…your an amazing mom! The bus helps to remind you that god only makes custom made lives you can handle.
    Have a good trip!
    Becky
    Delaware

  254. Oh, Kelle. You are such a good Mommy. Nella is beautiful and perfect, just like your pedi told you on day one. God has blessed you so richly and I thank Him for blessing those sweet girls with a Momma like you.

    Happy dreams to you.

  255. I left this poem as a comment a while back but this post reminded me of it again…of our custom fit lives.

    If we were to stand on a high hill and watch in the valley below the progress of a stream, we would see its breaks and turns, we would see its varying width, we would see clear and clouded areas, still and troubled stretches. But we would see it as one stream, flowing into itself.

    If we were to stand off from ourselves and from some high and mystic hill look down on this we call our life, it would not be unlike a stream, and we would see, with eyes free from the curtain of past or future, how days and months and years flow together, how all is swept along in the ceaseless progress of the soul.

    There are no isolated incidents in life though there may seem to be. No experience comes to us that is completely foreign to our consciousness, that has no relation to what we are. The happening that seems so tragic now, that seems to change our whole life, cannot, does not, affect the ceaseless flowing of our life, does not stand unrelated to the past or future, but flows from the past and is absorbed into the future.

    Can you remember the worries or fears of last year? Are they still as fearsome, as important, as they were then? Next year, the year after, and the year after, will you even be able to remember them? And today’s fear, which keeps your mind from rest and peace—will it be different from all the rest? It will not. It too will pass.

    How soon the stream of life flows on! “I’ll never be happy again,” “I’ll never love again,” we say, but almost before the echo of our words has died away we have turned our heart and life toward the new, and laughter and light and love beckon to us from tomorrow.

    What we are today is the result of all that has gone before. If we could, we would not exchange our experiences for those of anyone else in the world, troubled though our stream of life may have been and rough our voyage. We would not be the unique individual that we are without our particular background, without having passed through the experiences that life brought to us, without having made the mental, emotional and spiritual growth that we have made through the years. In the honesty of our soul we must admit that we would not want to be anyone else even if we could be. What we really want to be is the best possible self that we are capable of being.

    We may ask ourselves: What is the purpose of life? Why am I here? We may not be able to see our purpose clearly, we may not be able to understand ourselves or our life from a human standpoint, but if we will think for a while on a different plane, if we will ascend the hill of Truth, we shall get a view of ourselves and life that is beautiful and inspiring, that reveals new horizons and possibilities for growth and good. We are a living soul on a living voyage, without beginning or end.

    -Martha Smock

  256. Thank you, thank you for this post. I found your post after a friend shared with me Nella’s birth story and I have been a faithful reader since. I *aspire* to see life with your lens, see the beauty that is in ALL of our lives if we remember to look for it, focus on it, not just the challenges. I always dreamed of having a little girl, to do the “girlie” things with. When I envisioned my life, thats just what made sense to me. Well after years of infertility, I have twin boys! Ha,ha. God has a plan. I DO still long for a little girl sometimes but its not in the plan. God knew better. I can not IMAGINE not having my two boys, I am sooo in love with them, I didn’t even know enough to wish for them but God knew. One of my sons was born with a birth defect. I mourned for him, for us. I was sooo scared what life would be with all of the limitations they thought he would have. Would we be strong enough to guide him in this life? For a MOMENT, I wondered why we were being punished (my son, our family) because of spina bifida. Most days I can see a lot more clearly and the blessings God has put in our life. Our perspective has completely changed on whats important, what makes us happy and there are plenty of days I *forget* all about this disability only to be rudely reminded on another appointment or therapy date :). I love your attitude, perspective on life, it helps me refuel mine. But I also love your honesty and those getting hit by the bus moments because it makes me feel “normal” in what I feel some days too so THANK YOU!!
    http://www.ourdoubleblessings.blogspot.com

  257. Wow. You have handled the negative comments with such grace. Good for you- keep taking the high road. Less traffic there.

    Jealousy is an ugly thing. Hugs.

  258. Anonymous says:

    i get you kelle. thanks for sharing. your zest for life is so contagious, please don’t stop spreading it! i know i’ve infected others too, and it’s all because of you.

  259. Thank you for writing this post. It has brought out so many valuable comments from parents, some a little further down this road and others a lot further.

    I find it amazing that you have somewhere around 5500 followers. Your message transcends the negative riff raff, you somehow meet people right where they are in their acceptance. You are living it out, the good, the great, the painful. Showing us with love, family and friends our hearts can be mended.

    I completely understand how a moment like Nella simply playing with her toys can be stolen. The thief is the diagnosis. Once we have received the dx it causes us pause and we question moments and then we hear the screeching of tires but it’s too late, we’re hit. It can steal the joy set before our very eyes.

    I am a little afraid (of feeling that pain). You see I think we are going to be seeing much more of that bus because of where we are in our babies development. Up until now our littles are very much like all babies. But now my Kate is 7 months old and this is when skill after skill comes quickly. I am starting to remember what all the boys did at this time and the differences are starting to become more evident to me. While she has met all milestones thus far and even gave me her very own birthday gift yesterday of SITTING unsupported, I know delays will come. With that so will the bus but I know we WILL pick ourselves up dust off and move on.

    I didn’t think people used the word “yuppie” anymore. Who uses that word?

    Callie

  260. Kelle, I enjoy your blog and your beautiful girls. I hope one day when I have children I have the enthusiasm, creativity, and love that you do.

    This is the first time I’ve commented, and actually read all the comments!

    I understand your comparison of a DS child to the not having a boy. Even if I didn’t, I don’t have the right to judge or comment on that statement since I don’t have children of my own.

    However, I am the product of a mixed family. I have step siblings and a wonderful, loving step mother. What hit me about this post is saying you don’t have boys.

    Obviously, I don’t know your whole family dynamic, but it seems…interesting…to me that you would leave out the fact that you DO have boys. I realize they are not blood related, but from reading your blog I would assume that wouldn’t matter to such a loving person like you.

    Perhaps this is a subject you could one day expand on, the relationship with your step children. As a step child myself, I would love to hear your perspective.

    I hope you have a wonderful vacation!

  261. I know I already commented here but I just went back and re-read “twenty one months later: {a birth story}” because it just happened to be one of the”you might also like” at the bottom. Reminds me sooo much of my first (4yrs ago). I love my girls equally but there is something about the first (full term in my case)pregnancy, first delivery and first baby. I was bawling while reading. Oh and thanks now I want another baby and my youngest is only 11 months, lol. I do miss being pregnant :(

  262. Anonymous says:

    Ok…as a mother of 3 growned children and a grandmother of 2 kiddos…yes, when you have a child with any kind of disabilites it will be very difficult for them for many reasons, it is difficult when your children are normal. I think that this annonymous person was trying to say is that perhaps Kelle looks at Nella’s DS through rose color glasses. And she is very right. My neighbor has a son with some dissabilites that are not as Nella’s and they have fought the system for years, finally they hired their own attorney and took the system to task at a whopping 100K out of their own pockets and he is ble to attend a school that meets his needs. My kids are normal and they struggled period. Kids are mean spirited and it will be hard. I do admire you Kelle for staying so positive about your little princess, and also I have to agree with anonymous in regards to the comment you made comparing having gendred children and children with special needs. There is a HUGE difference, boys or girls are no different. Take what God gives you and be grateful. Great hugs to you all….

  263. Anonymous says:

    Kelle,
    Thank you! The bus keeps hitting me too…just when I thought the dang thing was gone. It hits me when I see other 2.5 year olds talking in full sentences and mine has never even said a single word…not even mama. It hits me when I see a child my Jacob’s age having an ice cream cone and I know he can’t because he is allergic to milk, eggs, soy, peanuts and tree nuts. And some days I’m perfectly okay with it…because although he may have an autistic spectrum disorder he is still one of the most beautiful, kindest loves I’ve ever met. I understand…thanks for sharing…it’s nice to know someone else has these days.

  264. Anonymous says:

    POPPA!!! I’ve been missing your comments!

    Rock on, Kelle. Nella is a rock star just like her mama.

    Aimee

  265. That little Nella is the CUTEST little baby I have seen! She is a DOLL!!!!!:)

  266. Anonymous says:

    So beautifully said…. and I admire your graciousness in responding to comments. I’m having a “hit by the bus” week myself… after 2 lovely weeks of vacation, we’re back – to therapy, exercises we should be doing, appointments, etc. Glad to hear it happens to others too…. but you’re right, we will move on. Happy times await!

    h.

  267. Anonymous says:

    Crystal (Mom of 5 boys) – Thanks for reading my comment and having interest in learning more about Lexi. If you go to the website, click on the button “Ask the owner for the visitor access code” and I’ll be able to get the password to you via email!

    Kelle and family – Enjoy Key West!

    Jill B (Overland Park, KS)
    http://lexiandluke.aboutmybaby.com/

  268. Anonymous says:

    I believe that anonymous was trying to say to stop looking at Nella’s DS thru rose color glasses. And she is very right. I am not going into any huge details on here but she is right. This is going to be a hard road ahead not to mention costing you lots of money. I do what I am talking about, not thru my own kids or grandkids but thru a very dear friend. Just sayin’

  269. i love the thought that there are a million different things that we won’t experience but that are ok because that is the way it is supposed to be for us.
    thanks for that, it really does put things in perspective.

    i often compare my life to other people’s and while i love my life, i sometimes look at what others have and what i don’t. it is really good to think that my life is custom made for me and that i should just enjoy my husband and my little boy and our ever-changing gypsy, army life as it is and ENJOY our small things. thanks for this post. it was really good :o)

  270. Crystal in IL says:

    Another lovely post! It spoke to every mama who has a special needs. My 2 1/2 year old daughter has HLHS and is g-tube dependent. This isn’t the life we would have chosen but it chose us and we love deeper for it. God bless!

  271. :) Sweet Kelle. I read your blog because I actually love to relive where I have been and simultaneously appreciate where I am now. I have loved reading all of your strong posts about how “ok” you are now with the whole DS thing and I smile knowingly. I know the gratitude for those moments because even now…7+ years later…there are new challenges and new experiences that are “delivered” by THE bus. I don’t say this to DIScourage you…it’s quite the opposite. In fact, I am OK with the fact that Mylie has Down syndrome, but sometimes I can understand why others aren’t. They don’t know it like I know it now, but I was them once, too, I remind myself. (I haven’t read the other comments, so I hope other mommies have said the same thing.) I can’t say that it will ever be easy…mothering ANY child is far from easy. I have 4 and they all have “special needs,” only some of Mylie’s needs have a name. :) Bless you and this journey. You ARE rocking the processing process! Be proud of you. Remember, there will be a lot of special help for you and Nella along the way, but you are already giving her the primary thing that she needs to “meet her fullest potential”…all the love that one mama’s heart could possibly hold. :) Ingrid

  272. i can’t believe people are STILL giving you the holland poem! ha ha ha ha. seriously. time to count and give us the total.

    as for the Anon drama… someone needs to go back to english 101 and learn what a metaphor is…? wow. you are ever gracious in your replies, kelle :)

  273. Anonymous says:

    Kelle you rock. That is all. Xoxo

  274. Kelle, I think you are amazing. You seem to have it all and then remind me you are human too. I wish i knew you IRL. Your outlook on life is beyond words. Your friends are lucky to have you as a friend. Have fun in Key West. We’ll be there for Hemmingway weekend (the 24th).

  275. I just wish the “anonymous” haters had the balls to leave their names. cowards. I feel sorry for them and their families.

    Your readers know that you are honest, inspiring, real, pure, beautiful, and that the last thing you care about is your “image.”

    Remember: love wins. always.

  276. Anonymous says:

    I’ll take Kelle’s rose colored glasses any day over you cowards’ negativity. You live life once. I’d like to live it through Kelle’s pink shades. She has helped me tremendously and she doesn’t even know me. Why don’t you negative nellies go read Dooce. For the reals. STFU. That’s right.

  277. I forget Nella has DS all. the. time. It doesnt even pop up on my radar when I see pictures or see her in person. All most people see is a little girl who is ADORABLE and very loved. What more could any child ask for!??

  278. you know sweetie…keep those rose colored glasses on! seriously..it is what will get you through the tough times! i know..after 13 years of infertility those glasses are what kept me sane..helped me to put my feet on the floor every childless morning!

    God blesses those who still believe and have faith in the trying times…this particular post is a testimony to me about your character…you are a rockstar and God does not make mistakes..he gave Nella to a beautiful soul who will help her find the beauty in the world.

    hope you are having tons of fun in key west! hugs and love to you. ♥

  279. Today I was riding the skytrain to Downtown Vancouver. I saw a mom come on with her two sons and her third little boy in his stroller. He was a Down Syndrome little guy and was SO very precious and sweet! He was giggling away and his mom was loving on him and snuggling him and his brothers were playing happily with him. They were so happy and so very normal…and I thought of you. You filled my mind…you and Brett and your precious Lainey and Nella and how wonderfully normal and sweet your family is. It’s funny, then, to see that you posted this today, just when I was thinking of you as being that family that you hoped to get to be. You are there for sure, and you are inspiring and Nella is wonderful!

  280. “And I’m not going to cry about any of it because there’s a million random things I’m never going to know, and everyone’s life is custom-made for them.”
    How simple and profound..Thank you for giving me a bit of a reality check. I was having a few days of feeling sorry for myself and comparing my life to others and focusing on only the negative, when really there is so much I am happy for, for some reason I just let myself lie on the road a little too long when I got hit by that bus.
    As Tom Petty puts it “Some days are diamonds, some days are rocks”

    Thank you for your honesty, and for revealing your tender soul to so many.
    There are so many great things I could say about your blog, but the one thing I am drawn to the most is the complete and unabashed love and devotion you show to your husband and children. It’s a beautiful thing to witness.

    Joanne

  281. Oh Anonymous icky person – I feel sorry for you, sorry that you project your feelings about how devastated you would feel about having a Ds baby, that you project them onto Kelle’s post.

    Get real, hon. And maybe whine somewhere else.

    Keep those rose colored glasses on Kelle, me likey!

    xo
    C

  282. Kelle, I pop over and check your blog out and always stay longer than I should…but I can’t pry myself away from your lovely words and family. I have my one and only love of my life, Lucas…3+ years into our journey and I’m happy to say that the older he gets the more he becomes “Lucas” and I can’t possibly imagine him any other way. Just yesterday he looked at me and said — for the first time — “Mommy pretty” and took my breath away! I really needed to be reminded about the million things I’ll never experience…and I’m perfectly okay with it all. Keep up your blogging and as you can see from your legion of fans, you’re quite the rock star! Have fun in Key West (one of my favorite places). Maybe we’ll meet up some day…we live in Miami!

  283. i just got done wrapping up a great big ole hug … and i’m sending it your way! you are an amazing person, kelle, thank you so very much for sharing your life!!

    ps – happy vacay!! enjoy it (as i know you will :)

  284. I just know that when that bus hits, your crash test dummy body flings up into the air with style, does a gorgeous somersault like a gymnast, and people like me are holding up signs that say “10” when you land on the pavement rocking’ a pair of stylin’ shoes.

    My littlest little has DS & I am also okay with it. He’s gonna be so much fun!

  285. Your Nella is beautiful. Your blogs have inspired me to start my own blog for my little ones. Thank you!:) Keep up your wonderful blogs, they have changed and inspired me for the better.

  286. Anonymous says:

    ” And when I hear about moms who kiss their babies before running to their chemo appointments or kindergarteners who draw pictures of their daddy-less families and nonchalantly tell their teachers that their daddy’s in heaven…well, I’ll take my custom-made situation just as it is, thank you. Because it’s beautiful and I am grateful.”

    Wow.

    Talk about perspective.

    Thank you Kelle.

  287. Anonymous says:

    ” And when I hear about moms who kiss their babies before running to their chemo appointments or kindergarteners who draw pictures of their daddy-less families and nonchalantly tell their teachers that their daddy’s in heaven…well, I’ll take my custom-made situation just as it is, thank you. Because it’s beautiful and I am grateful.”

    Wow.

    Talk about perspective.

    Thank you Kelle.

  288. Anonymous says:

    Kelle you are courageous. In your life and in your beautiful writing. I admire you so much. Please keep posting as often as you have lately. You are helping people. Like me!

  289. Anonymous says:

    I LOVE your blog!! I’m just curious….are you concerned about Nella one day reading the posts like this one? The one about her birth and all the raw and heart wrenching emotions that her having Down Syndrome had on you? I hope that’s not an offensive question – I was just honestly curious if that ever crosses your mind. Again…LOVE LOVE LOVE this blog and you!! You rock it mama!!

  290. Anonymous says:

    I must say that I admire the courage that Kelle has, to share herself so freely, so unabashedly, with so much passion, despite the fact there are THOUSANDS of people reading her every word, every day.

    Contrast that with the mean-spirited Anonymous Commenters who dare not stand behind what they have written. Why? Because they are frightened and ashamed. Of course they are. If they weren’t, they would proudly sign their names. I dare ya.

    They are like the people that complain about what’s on television. It’s like, you don’t like it? CHANGE THE CHANNEL. Or TURN IT OFF.

    Same thing here. We don’t live in some kind of fascist dictatorship where we HAVE to read Kelle Hampton’s blog.

    You don’t like it? Fine. Different strokes for different folks. Find some other blog that you like more (glasshalfempty.com, doomandgloom.org, or mudcoloredglasses.net) or create one of your own and send us all an Evite.

    – Hope

  291. Anonymous says:

    Oh…you are so right about a bus hitting you once you are a parent!
    You have such a good outlook for your family and Nella as well..I would love to spend a week with you and see life as you see it!! You live your life and don’t just sit around and watch life. Your little girls are beautiful and will bloom in life due to all you have given them!

  292. Ha!! I’m lovin’ reading the comments more than the post today. Kudos to all your followers who stick it to that “anonymous” dude(ette).

  293. Amazing. you make anything seem possible. i constantly tell my love how i want your life and how i was to have your traditons that your family does and how i want your perfect family, because in my eyes, you have everything. I love that you know you have it all. :) I love that you appreciate the loving bodies that you can call your own. Your life amazes me each day and every day.

  294. Kelle,

    Thank you for sharing your life with us. You inspire me (and obviously so many others!) so very much. I’ve said it before and I will say it again…your girls are so very lucky! You are such a wonderful mama. And they are absolutely precious, might I add 😉 As mamas, we ALL have days and feelings like you did today…you chose your words well (as always), and I completely understood what you meant! Have fun in Key West…can’t wait to read about it!!

    BTW, my baby is almost exactly Nella’s age and she does the exact same choppy pounding…our 2 year old did it as well when she was about 6 mos old!

  295. you just hold this amazing ability to put everything into perspective… i had a horrid public lunch today with my kidlets, and you know what…. as much as i thought i hated it, i am just so blessed to be healthy and have healthy chidlren… you remind me of this every day…

  296. I just ordered an affirmation ring pendant. On one side will be my girls’ names and dates. On the other side, I am putting the Joan of Arc quote, “I am not afraid; I was born to do this.” I intend to hold on tightly to it when I hear the rumble of the bus rounding the corner.
    I know with every fibre of me that I was created in large part to mother these two children. They were slated to be mine long before they drew breath, and I am grateful and awed that I was given them.
    Yet doubt and worry sneak in and shake me from time to time, and I briefly lose the certainty that powers that ‘mommy voice’ inside of me. I seem to come out of these episodes stronger and more certain each time.
    I think the questioning makes one a stronger parent somehow, exposing the total devotion and commitment that is the core of parental love. Though I don’t want to dwell in that uncertainty, I am coming to appreciate the value of an occasional quick visit. I will always be an imperfect mother, but it sure as hell won’t be because of a lack of effort!

  297. Nella is just getting more and more beautiful every time I visit this blog.

    After 4 years, after thinking that our world had ended 4 years ago, I have to remind myself that he has Down syndrome. And when I do, I do get teary or a tad sad or sentimental for what might have been the way I did that first year or so. I achieved acceptance in that first year – – but I’ve achieved total acceptance now. I can’t even seperate the Down syndrome from him – can’t seperate what might have been because THAT thought leaves me sad…imagining that somehow we wouldn’t have recieved Grant…whatever that means to encapsulate ‘Grant’.

    It’s so hard to describe it someone unless they share my exact experience, but his having Down syndrome is a big deal. But it’s also not a big deal. It defines who he is, yet it also is woefully inadequate. It’s on my mind, but it doens’t trouble my mind anymore.

    I’m so glad you are seeing ‘those’ families – those that are enjoying their beautiful, crazy new life and even dare to act as if nothing really changed after all. I hope others see us as that kind of family.

  298. Oh! I reread my comment – I meant to say I DON’T get teary eyed anymore! (I wish these comments had an edit option…;)

  299. Anonymous says:

    It is more than okay to have Those Days. Honestly, I’d be more concerned if you DIDN’T.

    I applaud you for being so completely honest and truthful about Those Days. It’s completely awe inspiring just how much you let us see, so thank you for that.

    Now, go have some kick-ass time in KEY WEST!

    “Life is composed mainly of ups and downs and most people tend to either be in a state of complete happiness or dwelling on all that is wrong with their world. The best place to be is right in the middle – content with life, blessed by all that is good, and learning and coping with all that could be better.”

    Kayla.

  300. Kellie, I used to get those hit by a bus feelings after my husband was badly hurt, they related to fear of the unknown but with time, as the ‘unknown’ revealed itself more and more, those ‘hit by a bus’ moments became less and less.

    Nella is beautiful and through your eyes you are opening all our eyes to Down syndrome, so thank you.

  301. What a raw and beautiful post Kelle. I get that feeling. That cut off the air in your throat feeling too when I remember my son died at six days old. While acceptance is part of what we desperately need to keep living, the reality can truly knock the wind out of your soul. I so completely get you on this post and boy did I need it. Although our lives and situations are vastly different, there is truth and similarities in the emotions. Nella is perfect. I can’t imagine her without DS, it’s part of who she is. Sending you my love…

  302. Kelle,
    I totally understand where you are going with your post.

    However 1 thing springs to mind… with your husband having 2 sons from a previous partnership… what part of being their step-mother doesn’t give you a piece of knowing what it’s like to have sons?

    Also, I wonder how it would have affected you if you hadn’t have had 2 girls. Why was it so important to you?
    I know we are all human, we all have wants, needs… desires… but it surprises me that you would really want a particular gender to “match” your husband’s sons.

    I appreciate your honesty.

  303. Hey!
    I´m new here! Please excuse my bad enlish, school – it´s soooo long ago.
    I like your pictures. And Your familiy an you, you are soo beautyful. And I´d like to read your book in Germany, too.
    Oh, my 2nd girle has DS. too.
    Greating from good, old Germany
    Martina

  304. Anonymous says:

    Hi Everybody
    I am the original ‘anonymous’ poster who admitted that I was upset by the comparison between a child having DS and having another boy. I have had the opportunity to enjoy and learn from the company of many children with DS. I just registered my dismay because I saw the comment as a slight against boys and families who have just boys.

    Kelle clarified her position to me and I respect that.

    I am am not a crazed, unhappy individual who is bent on ruining the karma of this blog. I also distance myself from other ‘anonymous’ commenters who made very nasty comments that could have been seen as my comments. I posted as anonymouse because I did not have time to register myself. Not becasue I am cowardly. I live in Europe so nobody could know me anyway.

    I just made a single point. I admit that my perceived slight against boys was an over reaction. What it was NOT was an admission that I could not accept a disability.

    I have 2 older boys and a girl. 10, 7 and 4. When I was the mother of 2 boys only, I had to endure many negative comments – particularly from mothers of girls who often made comments displaying prejudices that they knew nothing about. My older boy is gentle, considerate and absent-minded. He has a quaint nature that causes his many difficulties in the school playground. No2 is spirited, inquisitive and adventurous but is the most thoughtful individual I know. They both love mud and when they arrive in, covered in the stuff, my heart rejoices at the fun, exercise and rosy cheeks they have enjoyed. Just the other day, a woman with 2 girls told me she was choosing a cream carpet for her house because “well, I have 2 girls. It is not like when you have boys and they will dirty it”. I get these remarks all the time. I have taught my children to respect the home they live in.

    There are prejudices of all kinds. Luckily, many special needs children have benefitted from an educated public where at least political correctness protects them from nastiness.

    Derogatory comments about boys and men however abound. Advertising campaigns show how stupid they are (e.g. using the wrong cleaning products, not being able to ‘read’ womens’ minds); wives sigh at mens’ differences.

    This is why I reacted the way I did. I know now that my comments were seen as a revolt against the integrity of this blog when in fact I think that they align very much.

    It is the differences that boys/men bring that make our world richer. My daughter has brought me much joy. But I love her because she is an individual, just like my boys.

    Kelle, I know, posts regularly on the love she has for her individual children; the riches they each bring to her life and that of her family. No one wants to see any child boxed into a stereotype because each child brings their own gifts to their family and the world around them. And it is the duty of every parent to cherish and nurture those gifts.

    I apologize to anyone I offended and I hope the above clarifies any misunderstandings.

    Adrienne

  305. adrienne,
    i am happy that you clarified what you meant as it is exactly what kelle was saying in her original post…ds does not define nella and how she is loved. she is just nella. totally excepted and greatly loved, cherished with a family who will love her with rose colored glasses on and rose colored glasses off…agape love.

    the funny thing is you say that you have seen predjudices against boys/men and it upsets you…actually i feel like i see the same if not more against women/girls. but i am more intuned with the girl thing because i have only a girl. my girl is adopted and i have experienced it in this arena..by friends/family/total strangers. i have had them define gracee as “adopted” first instead of “my child” first..which makes my heart hurt. i pray for a day when the world will start looking at life through rose colored glasses and see our children how we see them..beautiful, complete and each with a unique spirit and situation.

    peace to you.

  306. Kelle,

    My son was born 12/29/09 without the magic extra chromosome and it is so fun to watch Nella grow and develop into the fabulous girl she was created to be. You spur *me* on to practice my little mans sitting etc.! She often is way ahead of my son!

    But when you described her movements with her choppy arms, I thought, “hey! My guy does that too!”

    You have inspired me to focus on what we have instead of what we could have – and I needed that.

  307. I read your posts..I follow your blog as I do so many others. I never read all the comments, cause there are always so many and usually I don’t have time. However, something prompted me this morning to read them and I can’t believe some people’s reactions.

    You are an optimist, that is clear. And everyone deals with the deck of cards they are given. We have a 1 year old with DS. I had an emotional break down yesterday during speech therapy. I was so angry at that extra chromosome. I was so angry at low muscle tone. I am NEVER angry at our son. I love him. And it’s ok to have those moments…it’s great in fact. Cause it is hard. And as I tell myself..I am great 90% of the time, but then something happens..that bus comes and BAM you are hit! And everyone responds differently. I am guessing you have less hard days than I do. I didn’t really start having hard days until our Jack was about 8 months old and I started seeing the “difference” I have no clue how people with only one gender feel and I am sure they have no clue how i feel. the point is that we all have trials and hard things in life and the way we cope and love and even cry is what makes us human, lovers, parents, friends, etc. Keep posting – even if people give you a hard time. I can appreciate that people are different, so don’t let them get you down.

    Muwah!

  308. Once again your honesty is so refreshing Kelle. You certainly have a way of putting things into words and give a new perspective. Thank you for inspiring so many.

    Have a great time in Key West! Blessings,
    Sandi

  309. Oh, my my my. What have we stirred up here? Ha. Enjoying a cup of coffee in Key West, and thank you all for your beautiful comments.

    I thought about writing a post on rose-colored-glasses but this blog is for us and our life and I’m not going to waste a post on clarifying misunderstandings.

    Here’s the thing…people have lots of hurts, and hurts come out sometimes in anger, misunderstanding, not liking other people’s lives, etc. I realize that and embrace everyone’s hurts and anger and feelings and perspective. I’d hope others’ would do the same for me, but that doesn’t always happen…and that’s alright.

    On the glasses? Call them what you may…I’ve had them my whole life and will wear them to my grave. In fact, I think they’re lense implants. I’ve had a lot of hurts in my past–a past that might surprise some. But I was always happy. And I know many people that wear these same glasses…people that are going through far “worse” than us. I’ve spent summers at pediatric cancer camps where children are bald, going through their third round of chemo…and you know what? Their families are wearin’ the same glasses. It’s called happiness. And it can be found anywhere. You still have bad days, you cry…hell, sometimes you get angry. But it doesn’t rob you of your happiness. I know it’s going to get harder on this road. But I’ve heard from both kinds of responses–families with grown children with Down syndrome that have done nothing more than complain and cry about everything they’ve had to go through…and families with grown children with Down sydrome that have gone through it all…the surgeries, the hurts, the ridicule…and yet they still celebrate life and find happiness and will tell you that life with all its richness has been beautiful. And sometimes people can’t understand that.

    Happiness is not dependent on what happens to us. If Nella is at the lowest end of the spectrum, needing all sorts of help, struggling with all her milestones, requiring surgeries…you know what? We will still be happy. Celebrating what we have…that’s still more than so many people. We are lucky. We are lucky we even have kids…four kids that can walk and hug and enjoy a sunset on Mallory Square in Key West.

    And please remember…this blog is a fraction of our lives. I choose a little piece of pie to share with each post…there’s a whole lotta pie not being shared. There are therapists in our home every week, there are doctor appointments, there are days when the shit hits the fan. I don’t write about it because I forget about it…it’s not what I focus on. And it’s not all that bad. In fact therapy is a blast–a shared cup of coffee with our super-cool p.t. who loves my girl…. It’s awesome.

    Life sucks sometimes. And that’s okay. My glasses have super-human powers and I’m wearin’ them forever.

    So here’s to rose-colored glasses, to permanent lense implants, to taking the rough and ragged edges of life, to sour, sweet and all the in-between lemons.

    Here’s to being happy…and here’s to the incredible women (and men!) out there that understand sucking the marrow out of life for all it’s worth.

    Cheers to all. Even the angry ones.

  310. Oh, my my my. What have we stirred up here? Ha. Enjoying a cup of coffee in Key West, and thank you all for your beautiful comments.

    I thought about writing a post on rose-colored-glasses but this blog is for us and our life and I’m not going to waste a post on clarifying misunderstandings.

    Here’s the thing…people have lots of hurts, and hurts come out sometimes in anger, misunderstanding, not liking other people’s lives, etc. I realize that and embrace everyone’s hurts and anger and feelings and perspective. I’d hope others’ would do the same for me, but that doesn’t always happen…and that’s alright.

    On the glasses? Call them what you may…I’ve had them my whole life and will wear them to my grave. In fact, I think they’re lense implants. I’ve had a lot of hurts in my past–a past that might surprise some. But I was always happy. And I know many people that wear these same glasses…people that are going through far “worse” than us. I’ve spent summers at pediatric cancer camps where children are bald, going through their third round of chemo…and you know what? Their families are wearin’ the same glasses. It’s called happiness. And it can be found anywhere. You still have bad days, you cry…hell, sometimes you get angry. But it doesn’t rob you of your happiness. I know it’s going to get harder on this road. But I’ve heard from both kinds of responses–families with grown children with Down syndrome that have done nothing more than complain and cry about everything they’ve had to go through…and families with grown children with Down sydrome that have gone through it all…the surgeries, the hurts, the ridicule…and yet they still celebrate life and find happiness and will tell you that life with all its richness has been beautiful. And sometimes people can’t understand that.

    Happiness is not dependent on what happens to us. If Nella is at the lowest end of the spectrum, needing all sorts of help, struggling with all her milestones, requiring surgeries…you know what? We will still be happy. Celebrating what we have…that’s still more than so many people. We are lucky. We are lucky we even have kids…four kids that can walk and hug and enjoy a sunset on Mallory Square in Key West.

    And please remember…this blog is a fraction of our lives. I choose a little piece of pie to share with each post…there’s a whole lotta pie not being shared. There are therapists in our home every week, there are doctor appointments, there are days when the shit hits the fan. I don’t write about it because I forget about it…it’s not what I focus on. And it’s not all that bad. In fact therapy is a blast–a shared cup of coffee with our super-cool p.t. who loves my girl…. It’s awesome.

    Life sucks sometimes. And that’s okay. My glasses have super-human powers and I’m wearin’ them forever.

    So here’s to rose-colored glasses, to permanent lense implants, to taking the rough and ragged edges of life, to sour, sweet and all the in-between lemons.

    Here’s to being happy…and here’s to the incredible women (and men!) out there that understand sucking the marrow out of life for all it’s worth.

    Cheers to all. Even the angry ones.

  311. Oh, my my my. What have we stirred up here? Ha. Enjoying a cup of coffee in Key West, and thank you all for your beautiful comments.

    I thought about writing a post on rose-colored-glasses but this blog is for us and our life and I’m not going to waste a post on clarifying misunderstandings.

    Here’s the thing…people have lots of hurts, and hurts come out sometimes in anger, misunderstanding, not liking other people’s lives, etc. I realize that and embrace everyone’s hurts and anger and feelings and perspective. I’d hope others’ would do the same for me, but that doesn’t always happen…and that’s alright.

    On the glasses? Call them what you may…I’ve had them my whole life and will wear them to my grave. In fact, I think they’re lense implants. I’ve had a lot of hurts in my past–a past that might surprise some. But I was always happy. And I know many people that wear these same glasses…people that are going through far “worse” than us. I’ve spent summers at pediatric cancer camps where children are bald, going through their third round of chemo…and you know what? Their families are wearin’ the same glasses. It’s called happiness. And it can be found anywhere. You still have bad days, you cry…hell, sometimes you get angry. But it doesn’t rob you of your happiness. I know it’s going to get harder on this road. But I’ve heard from both kinds of responses–families with grown children with Down syndrome that have done nothing more than complain and cry about everything they’ve had to go through…and families with grown children with Down sydrome that have gone through it all…the surgeries, the hurts, the ridicule…and yet they still celebrate life and find happiness and will tell you that life with all its richness has been beautiful. And sometimes people can’t understand that.

    Happiness is not dependent on what happens to us. If Nella is at the lowest end of the spectrum, needing all sorts of help, struggling with all her milestones, requiring surgeries…you know what? We will still be happy. Celebrating what we have…that’s still more than so many people. We are lucky. We are lucky we even have kids…four kids that can walk and hug and enjoy a sunset on Mallory Square in Key West.

    And please remember…this blog is a fraction of our lives. I choose a little piece of pie to share with each post…there’s a whole lotta pie not being shared. There are therapists in our home every week, there are doctor appointments, there are days when the shit hits the fan. I don’t write about it because I forget about it…it’s not what I focus on. And it’s not all that bad. In fact therapy is a blast–a shared cup of coffee with our super-cool p.t. who loves my girl…. It’s awesome.

    Life sucks sometimes. And that’s okay. My glasses have super-human powers and I’m wearin’ them forever.

    So here’s to rose-colored glasses, to permanent lense implants, to taking the rough and ragged edges of life, to sour, sweet and all the in-between lemons.

    Here’s to being happy…and here’s to the incredible women (and men!) out there that understand sucking the marrow out of life for all it’s worth.

    Cheers to all. Even the angry ones.

  312. On looking at life with positivity, I work with cancer patients and one of my favorites is a lady who has waged a fierce battle with her disease. At one time, she had to wear a pump that infused chemotherapy continuously…she winked and told me that she told her grandchildren it was an IPod. When they said “Gramma, I don’t hear the music,” she would tell them “I do,” and she would go into a silly little dance. You see, Kelle hears the music. She really, really does. I just wish some of these dear…and I do mean dear people who took a metaphor farther than my little Maven of Metaphors intended, could just enjoy coffee on her lanai with her…could hold Nella…and maybe, just maybe you would hear the music too.

  313. While anon wasn’t as eloquent as he or she could have been, I think the point was that Ds is a bigger deal than gender disappointment.

    Kelle, you are in a rare position to have a baby with Ds who, as of yet, really doesn’t act like it or have significant consequences associated with it. There are many parents of children with Ds whose reality is very different than yours. If you felt hit by a bus when Nella shook a rattle in an odd way, imagine open heart surgery or one of the various other frightening things many of us have faced.

    I think it is easy to be “over it” when it hasn’t really rocked your world yet, and hopefully it never will but you should be aware that your situation is uncommon. Most of us don’t have the “you’d never know it happened” life because we are living the reality of medical issues and developmental delays… Our families are not defined by Ds but we aren’t trying to push it off the stage either.

    That picture of Nella is precious.

  314. …..that tiny photo is like “Heaven with a hat on”. xoxo Little, sweetiepie Nella has swept us all up in a way that has changed each ‘n every reader here Kelle either with surface thoughts of “what a cute babe and what an adorable family” or digging deep to discover that “this is what grace surely looks like”…..your words shared have been a blessing this day Kelle – thank you for exposing your heartthoughts.

    God Bless,
    Barbra.

  315. Anonymous says:

    Thank you Kelle and Poppa! You are both AMAZING!!!!

  316. wiping a tear away…i knew there was a reason that i was so drawn to this sweet blog..it is those lovely rose colored glasses that you look through. seriously i do not think my life would be what is is right now if it were not for those babies!! i intend to pass them on to gracee..it is my duty and i want her to see this beautiful, messy world.

    your poppa and family remind me so much of mine…life sends you a little lemon every now and then and then you turn it into the sweetest homemade lemonade you could ever imagine…we live by this and that is why we feel life so deeply…we groove to whatever beat the music of life gives us.

    have a good day friend. ♥

  317. Here, here. I am putting on my rose-coloured-glasses and I am not taking them off either :)

    How can your comment even make me cry? lol. Have a great time in Key West, thanks for the response to all this anonymous madness.

    Love,
    Sarah
    http://mylittleheroine.blogspot.com

  318. “And those who were seen dancing were thought to be insane by those who could not hear the music.” Nietzsche

    Dance on, my friend, dance on.

  319. Oh Kelly, I just love love LOVE your blog. It’s your truly inspiring words that makes me want to be a better wife, mother, and person. It makes me slow down. Just this morning I got done getting ready for work earlier then normal. So I sat on my couch, drinking my yummy chocolate-caramel flavored coffee when my sweet, still sleepy eyed 3 year old little girl came out and snuggled with me. I took it all in. I enjoyed every moment and even thought of you.
    When I found out I was pregnant with that sweet little girl, I was heartbroken when I first found out she was a girl. I cried and cried when that lady said the G word. “I had no idea what I was going to do with a girl.” But after I held her in my arms she was perfect, exactly what I wanted just didn’t know it 20 weeks prior. Heartache comes in all different forms.
    Thank you for being so honest in you feelings. It means a lot. All though I think I will always be bummed that I will never know what it feels like to be a natural blond. lol. Thank you Jesus for hair dye.
    Poppa: I’m so in love with you family and after I read you comment all I could think about is how I wish I could hold Nella Bean for just 5 minutes so I could hear the music.

  320. juls2010 says:

    My sweet Ava is just about three months old and we are settling in to our new “custom made” life with a baby with Down syndrome. I’m finally getting over the shock, but I get that sting when I see her little tongue always hanging out, and fast forward to an age when kids will mock her. She may not even know it, but I will know…I will watch silently and suffer. But this is life and we all have a cross to bear. I am positive that the good will outweigh the bad, and most important God’s hand is in all of it. I am at peace with it – knowing that He will be walking next to me through it all. Thanks for sharing your most private thoughts with us, Kelle.
    Julie

  321. I love your outlook on all of this. I have since the day you posted your birth story of Nella. You know I love your writing and all your photos. This is no different. It’s always good to see the positives in situations and not dwell on the negative. Yes, life with DS might be hard sometimes but you’re right: it could be a lot worse. She’s a gorgeous baby and you are a fabulous mother.

  322. Wow. I know you don’t think this, and probably don’t want to be seen this way but you are a heroine. I am inspired and touched to read your gorgeous words.
    Thank you for sharing,
    Rachel

  323. Good perspective you got going there.
    IT is important to process loss. Suppressed grief can turn into depression.
    That being said. I have a son who was diagnosed at birth with a birth defect. He has severe cerebral palsy, uses a computer to communicate. He turned 30 this Independence weekend. He was surrounded by sisters, brother in laws, nieces and nephews. Joy abounded. As my 20 month old grandson exclaimed, “HAPPY! YUMMY!” Life is glorious. It truly is. More joy that I could ever have hoped or imagined. And yet, at times , even now, I too feel that pinch of, “What? What? I have a son with this level of
    disability?” It really is possible to live a life in both places….great joy and sadness. Our son remains the soul of this family . Your Nella. A treasure.

  324. Anonymous says:

    First of all not all anonymous people on here are bad !! some people need to stay just that, anonymous…so please respect those who choose to stay that way, it is got nothing to do with being a coward, it could be protection from some sort? have you ever thought of that?? besides if I signed Susan does it really matter? you don’t know me from adam so why does it matter? I come to visit here today and I find all of this ugliness on this blog. who the hell needs that? not me not wasting my time….enjoy all of your ugliness all to yourselves. I will go somewhere else where it is positive worth my time reading….goodbye !!!!

  325. Anonymous says:

    First of all not all anonymous people on here are bad !! some people need to stay just that, anonymous…so please respect those who choose to stay that way, it is got nothing to do with being a coward, it could be protection from some sort? have you ever thought of that?? besides if I signed Susan does it really matter? you don’t know me from adam so why does it matter? I come to visit here today and I find all of this ugliness on this blog. who the hell needs that? not me not wasting my time….enjoy all of your ugliness all to yourselves. I will go somewhere else where it is positive worth my time reading….goodbye !!!!

  326. Anonymous says:

    Cheers, Kelle and Poppa! I have a lot of difficulties going on in my life — different from yours — but difficulties nonetheless. Each person has her own cross to bear, and it’s in how you bear it that defines you. There are nights (yes, nights, because I am awake 20 hours a day every single day) that I just want to throw in the towel. But then, as soon as that thought comes, I say a little prayer, get some inspiration (like thinking of my beautiful daughter’s face or reading Kelle’s wonderful blog), grab a tall cup of coffee, and continue bearing my cross. Life is hard, and I choose to see it throught rose colored glasses too. Make it a little bearable, and whole lot beautiful, for my daughter’s sake, most especially. Thanks Kelle! Keep on rockin!

  327. Anonymous says:

    Anon, goodbye to you too!! GOOD RIDDANCE!!!!

  328. Anonymous says:

    I like your blog, I understand your point and i think you are really amazing with your two daughters. I like that you are changing our minds about what is down syndrome, since now for me it is completely difference.

  329. ps….I think your dad also ROCKS!

    I can see where you got your zest for life, your upbeat attitude, and your inspiration.

    I LOVE your blog Kelle. You inspire me every single day. I want to be more like you in how I handle each situation life throws at me. I really can’t even put into words how amazing I think you are. I totally get what you are saying on this post. For those that don’t get it, or want to make it out to be something else, they don’t understand. Keep doing what you are doing! :))

  330. What a beautiful post. Thanks for sharing this. You are such a wonderful example!

  331. Kelle,

    You get so many comments that I don’t know if you will ever get to this one, but I’m going to comment anyway!

    There are so many reasons why I read your blog.

    1) I too got hit by the bus. My almost 4 year old is dying.
    2) I have a 5 month old daughter who I think is just a week younger than Nella.
    3) I have my own little blog (started it when my terminally ill daughter was diagnosed) and I love to try to copy your pictures! Let me tell you, the baby looking in the mirror picture was not easy, lol!
    4) The way you write is beautiful.

    Keep on going. And hang in there when the going does get tough.

  332. Kelle,

    Thanks for this post, I needed it. Just before popping in to read your blog I was suffering from being hit by the bus myself. I’m pretty sure the bus ran a red light, spotted me in the crosswalk and gunned it, well, I’m not pretty sure, I’m actually pretty certain that’s how it happened.

    There are many things in life I too will never know, things I don’t understand at first glance, and chances are still won’t understand after the second or third glance. But the one thing I DO know is that god has a plan for each of us and he knows that in our own amazing way, we WILL truly “rock it out”. I also know that in order to “rock it out” and be a full on rockstar, one must own a pair of rockstar glasses. Now mirrored aviators may look way cooler from the outside looking in, but those rose colored glasses look so much sweeter from the inside looking out! And the way I see it, if someone is looking at us a little funny for wearing those rose colored glasses, well, clearly, they’re in desperate need of their own pair.

    So here’s to you Kelle Hampton, for being honest, for being a rockstar, for proudly wearing your rose colored glasses and for being an amazing mom!!

    Enjoy your coffee in Key West…or whatever little beverage you might be sipping on, and most of all, enjoy every second of your little family get-a-way!!

    Kim D

  333. Not all anonymous writers are the same, first of all. I doubt Anon wrote that last post about leaving the blog. It’s obvious she enjoys the blog, just was hurt about the comparison of gender disappointment to DS. I agree. I also agree with the comments about Kelle having two boys – her step-sons. It saddens me they are rarely mentioned and pictures are even more rare. How does that make them feel? I would feel really hurt.

  334. i have 2 sisters who have downs. (not adopted…2 biological sisters- everyone always asks that!) They have different functioning levels. One is a spunky spitfire and the other is was a poet in another life time. They are 23 and 19 now- beautiful young women. It is a beautiful journey. Happy to see you enjoying all the small things…the moments that make a life happy.

  335. A friend says:

    Peeps, the boys spend a lot of time at their mom’s so they are naturally not included in all sorts of activities.
    If you follow her blog closely, you will notice the sincere love she has for the two boys.

  336. Anonymous says:

    shocking that someone would criticize you for writing your own words on YOUR life story!! I personally love what you have to say and understand that it’s your account of your life…
    I have to say as I was reading this around every turn I felt tears welling up and then on the next sentence they would dissolve… your writing is so beautiful & from the heart that it makes me laugh & cry & most importantly think about the beautiful life that I’m blessed with!
    so for that THANK YOU!!
    if there’s one thing I would wish for it would be your acceptance of things – I have the opposite problem — as much as I would love to embrace everything around me I can’t always do that. I’m trying to get over that and your blog makes me realize how fortunate I am and to let go a little & just enjoy! I adore you & your words!! keep writing and keep posting!

  337. oh Kelle Kelle Kelle!! I don’t always post ..but I had to on this one. My oldest is 11 and youngest is 4…every year my worries set in about the upcoming year. What will the world bring upon my 4 littles this year? I dread them growing up and becoming teenagers..but i am excited at the same time to see them grow and become who they want and need to be..worry could absolutely consume me as a mom…..but like you….i just let it out..swallow it down and keep going…they make me who i am!! I hope i am helping them make them who they will be too!! (total side note…i had a dream last night that we were BFF’s singing the national anthem somewhere) RANDOM- I KNOW!! =0

  338. Have a blast on your trip!
    I look forward to a blog post all about it :)
    And I completely know what you mean about Nella. I forget all the time that she has Down Syndrome. And I can relate in that my almost-3-year-old has some learning delays and I don’t see that when I look at her. I see Scarlett. Of course there are reminders when she’s around other kids her age – or kids even younger than she is – and she isn’t doing or saying as much as they are. But she’s sweeter than most kids her age. She’s more affectionate than most kids her age. She’s more eager to please than most kids her age. She’s just herself. Her perfect self :)
    And Nella is perfectly Nella. She rocks out Nella-style out like no one else could. And my God, the girl is breath-taking. :)
    Anyway, hope you all are having a grand time!

  339. Oh! And Kelle, last night I definitely had a dream that we shared a cup of coffee together in my kitchen while our girls played together. It was a sweet dream :)

  340. Hey Kelle & Poppa,

    You ARE both awesome, indeed!!! Can you pick me up a pair of those ” glasses” in Key West?? I think they’re JUST what I need.

  341. Kelle, funny thing about buses. They have stops. So just when you think they are gone, they are back again.

    Honestly, I don’t know how you can compare the feeling of loss because you never had a baby of certain gender to having a baby with Down syndrome.

    Maybe I’m just getting too caught up in the cognitive disability that comes with Down syndrome. I believe in my son, and I love him to pieces, but the disappointment of all he “nevers” that most probably come with a Ds diagnosis.

    I have my boy, and I will admit, that after having 2 girls. I did want a boy. I felt like I was missing out on something.

    Now I have my boy, and he has Down syndrome, and I still like I am missing out on the experience of having a son because he has Down syndrome. Because of that extra chromosome, my son will never be a father. He may not be able to be whatever he wants to be when he grows up. He may never get to drive a car or live on his own.

    I am all for a positive attitude, finding the beauty in every day, and embracing the life you have, but I also think it is important to appreciate that not every day has to be full of sunshine. Sometimes it rains. The trick is appreciating the beauty of rain.

    Loving your child is the easy part. Accepting and acknowledging the loss that can come with the diagnosis can sometimes be harder. As much as we say everything is ok, sometimes, it just isn’t.

    We all have those days.

  342. One more thing (I promise, then I’m finished! ha!)…
    I skimmed some of the comments that were left to you. Many of the less than tactful commenters mentioned the horror of IEP’s and Early Intervention and yadda yadda yadda.
    I can tell you that we are in the throng of these things with my oldest daughter. She receives early intervention twice a week and has for the past 10 months. I still look forward to these sessions. Every morning Scarlett wakes up and asks “Miss Carolyn coming?” Her teacher is just another person that gets to love our girl, and another person for our girl to love. Their relationship is SO special and I love watching them interact. Scarlett has orientation tomorrow for preschool (she is going after she turns 3 because her delays are still significant – so significant that the Intermediate Unit doesn’t think they could meet her needs in our own home). Scarlett is SO excited. Whenever we pass her school she grins and points “School? School Mommy?” She proudly totes her book bag every where and we are looking forward to her entry into preschool with nothing but excitement. Her IEP meetings are a precious time when we get to learn better about our girl, and how we can help her.
    These are NOT things to dread. The support we’ve received has been absolutely WONDERFUL. So many people who love Scarlett working together to see her succeed is possibly the most moving experience I’ve had yet in my life.
    So chin up love (not that it isn’t all ready) – good things are to come :)

  343. I’m sure someone may have said this and possibly even better…but, I believe that DS is a part of her. It however, doesn’t define her. She’s just Nella. Just like Lainey is just Lainey.

    Sometimes it may come to the surface and give you pause, make you cry, whatever it does…and that’s okay. That’s life I guess.

    We all as parents want a perfect life for our children. We see them as newborns and we want to give them the world on a silver platter. We want nothing to be wrong for them. Ever. There’s nothing wrong with that, but no matter what, it’s not possible either.

  344. It has been most entertaining to read all of these comments.

    Our daughter, Lila, will be 4 in September. We have had so many difficulties with health issues and delays. We choose to wear the rose colored glasses too, if that is what we are calling keeping a positive attitude, being thankful for our beautiful girl, and enjoying every second that God has blessed us with.

    It ain’t easy, but neither was raising my 22 year old son and 24 year old daughter that are both typical kids! All kids come with their challenges.

    Rock on mama! Keep the faith~ you are awesome!

  345. So touching and so beautiful. I’ve been hit by that bus plenty of times and I’m sure I’ll continue to. I guess it’s what happens when you become a parent. You put into beautiful words what we all feel, thank you.

  346. Anonymous says:

    To “hayley”. Yes what you wrote does “sound weird.” Nella looks very much like a D.S. child but so what? How offensive. Are you suggesting that might make the D.S. more tolerable? People like you are so out of touch.

  347. Kelle, I’m with you and Poppa!

    LOVE your writing, LOVE your photography and LOVE your “rose-colored glasses” ! I have my own pair … They are powerful … I wear them all the time … will wear them forever. C:

    Our J is a healthy, beautiful, smart, strong and amazing little girl. She has been our greatest teacher. J was diagnosed with Down syndrome at birth. She was born with two severe heart defects, had two heart surgeries and spent five months fighting for her life. I can tell you she is definitely not defined by Ds or by heart/health issues. J is our love, our treasure, our biggest joy. She is bigger than any diagnosis, she is so much more than any health issue or any challenge. We are so proud of her. She is our little warrior. J is our hero!

    Down syndrome is not a big deal for us and I know many families with children and adults with Ds that feel the same way about it.

    Thank you so much sharing your beautiful family and for showing the world that children and adults with Ds and their families are not defined by Down syndrome. We have beautiful families, we are happy and we celebrate life!

    I can hear the music too…

    Cheers!

  348. Hi Kelle and THANK YOU so very much for all you share here. Not everyone will ‘get it’ or love it. And, anyone who has read Nella’s birth story, or many other of your posts will find it hard to argue that you are not ‘real’ or that you are ignoring your challenges. I have been impressed so many times at your honesty about the hard stuff. It is obvious to me that you are embracing your life as it is…hardships, challenges, and joys. Bravo to you for sucking that marrow out of your beautiful life…and for showing me how to do the same. Now I gotta run…am going shopping, looking for a pair of those rose colored glasses…the biggest most outrageous pair I can find!! XOXO

  349. Brit Girl says:

    Hi Kelle,
    Good grief! Commentland sure was busy on this post. Anyway, I just wanted to send over a supportive hug, and I hope you are enjoying your mini-break. I look forward to hearing about Key West (as well as everything else, you are also a travel writer for me!). Also: your blog keeps me sane. Hugs to LL and NC from UK! Sx

  350. Anonymous says:

    “TUC said…
    While anon wasn’t as eloquent as he or she could have been, I think the point was that Ds is a bigger deal than gender disappointment.

    Kelle, you are in a rare position to have a baby with Ds who, as of yet, really doesn’t act like it or have significant consequences associated with it. There are many parents of children with Ds whose reality is very different than yours. If you felt hit by a bus when Nella shook a rattle in an odd way, imagine open heart surgery or one of the various other frightening things many of us have faced.

    I think it is easy to be “over it” when it hasn’t really rocked your world yet, and hopefully it never will but you should be aware that your situation is uncommon. Most of us don’t have the “you’d never know it happened” life because we are living the reality of medical issues and developmental delays… Our families are not defined by Ds but we aren’t trying to push it off the stage either.

    That picture of Nella is precious.”

    I think that this says it all.

    Most people count their blessings. You call it rose-tinted glasses. DS is a continuum. Some have major difficulties. Others less so. My older sister cried a bucket when I got my first car. She was sharp enough to realize that I was passing her out; when she fell in love with a boy at her sheltered work shop, my parents discouraged the relationship fearing that she would become pregnant.

    Don’t look down at people who are tackling DS head on. If you bury your head in the sand, are you really celebrating your little Nella.

  351. bells, don’t be upset with me;)

    knowing that my best friend, confidant, and chosen family is happy and at peace in. this. moment. can only makes me ecstatic and at peace right along with her. i think it should be human nature to want those around you to be happy. wouldn’t this world be a better place if we could all, gracefully, turn something that we didn’t expect or know we even wanted- into something amazing and good.

    from someone who watched nella take her first breaths of life; who watched her best friend grab nella and pull her out of her body and onto her chest because she couldn’t touch her baby soon enough. this mama who kissed and loved and nuzzled on the baby she knew at one glance didn’t seem exactly the way she had seen her in her dreams…kelle has struggled to get where she is today. she has been honest and forthcoming and above all REAL.

    i have watched her writhe in physical pain while at the same time hold her baby and tell her how much she loves her. i have seen the primal instinct of a mother protecting her cub when the nurse didn’t bring a crying nella directly back from the nursery after some testing.

    i have listened to her doubts, fears, as well as her hopes, dreams, and above all the love she has for nella and lainey.

    kelle, knows that the future will bring new challenges and more doctors and more therapies. we have talked about these things. the things we think we know will be a part of nella’s future, but we talk so much more about nella’s first birthday party and wonder if we should rock out a princess party or something even better like rock star baby themed party.

    we talk about prom and tea parties. we talk about what nella could do in the future. maybe she’ll be an artist, a dancer, maybe her mama’s book editor, a writer like her mama. a photographer. maybe a mother, maybe not. we know she will bring joy and make us smile and be a phenomenal sister and friend.
    she already is an amazing teacher! goodness, we love her so much.

    we talk about what she will do, and only touch on the things that she may do slower or may never do at all.

    this is kelle. it is how she lives her life. with sunshine, honesty, and a love so deep you can feel it when you sit next to her.

    she has hurt, she still hurts, but she continues to focus on the happiness in her life. her focus is not ds or that she misses her sister & family terribly or that she has to budget tightly or…

    her focus is loving those girls. living her life to the fullest, and loving her man.

    i’m crying now, but i know if kelle were to lose both legs…she would rock it out. she would work through the disappointment and feelings of loss and then at some point, bling out her chair and start planning a vintage inspired garden brunch for her girlfriends. it’s just her. she is amazing and she will ALWAYS FIND THE HAPPINESS in ANY situation. she does it for herself and above all…she does is for her children, nella and lainey.

    she loves this blog and all the amazing people she has ‘met’ because of it. i love that she has found real healing and inspiration through her writing and from all of the people that lift her up on a daily basis.

    kelle has been writing in this blog for years. years before nella was even born. she writes the same as she always has. she posts beautiful photos, as she always has. not much has changed except that she has given birth to another baby. a perfectly healthy child that she is in love with. nella blesses our lives as any child does.

  352. Kelle & Poppa,
    Thank you for responding to the drama in comment-land with your ever-present grace & honesty. Even after my 40 years of life it still takes me by surprise when people begrudge the happiness of others. We all have our struggles & hardships in this life… it’s what we do with them that matters most. My personal experience in the DS community is one of great support but I know it is not always like that for everyone. Even within our world of shared-magic-chromosomes we are all very different people.
    And *that* is a very beautiful thing.
    Enjoy your vacation!
    Kate

  353. yes, there will be pain and some struggle, but that is the same of ALL children. my mama always says that children don’t come with manuals. well, thank god for that because we are all different. all of us.

    kelle finds beauty in the smallest details of life. from a single teardrop to a double discounted pair of fuzzy pink slippers she scored at target. oh, and i love her for that. for teaching me, and everyone around her what really is important in life. she’s been doing it for as long as i’ve known her. from the first time i met her at pf changs in her hot orange jacket and matching lipstick…the girl is good. she just is. she’s not perfect. no way. she should never have worn that hot orange jacket…lol! kidding.

    like the rest of us she leans on the people she loves the most in this world for comfort and strength. she is doing this now as she is affected regarding some of the conversation and anonymous messages she has received through this blog and her email.

    as kelle is, i blown away by the support and love she is receiving.

    anonymous, please remember that kelle is just a person. just like you are. she hurts and loves the same as anybody else. your points/or your words have been noted.

    and no, i didn’t read this over for mistakes or grammar errors. i’m writing out of emotion, maybe not the best time to share my feelings.

    for the other thousands of amazing people who read and comment, you inspire so many.

    i love you, bells!

    h.

  354. Anonymous says:

    kelle and heidi and poppa and family:
    please don’t let these comments ruin your vacay. these are just comments. let’s all continue living our lives the way we choose. if others don’t agree with it, that’s okay, they don’t have to. if they’re attacking you, it’s okay, they’re not going to hurt your soul. there will be people who will not agree, and will write ugly things, that’s a fact with such a popular blog. don’t forget that there are more people cheering you on 100%, like me! i admire you for your courage to put your vulnerability out there and for the beautiful way you have handled the “weird” reactions to what you wrote. you are so blessed, you have an awesome family to back you up, and a beautiful life to look forward to wearing those rose colored glasses! keep sharing!

    love ya’ll! and i can’t wait for your post about the Keys! I’ve never been there and am excited to see it through your lense!

    from,
    TX mom who is in such deep shit right now but thanks to your blog, and other people who don’t know that they inspire me a lot, I’m not giving up this fight!

  355. Everything Heidi said! I don’t even “know” kelle but I’ve been reading the whole blog past and present now for about six months. I find comfort here after my own bit of heartbreak in January- lost my fifth child to a late miscarriage. Kelle’s positive outlook has helped me to heal and gracefully accept pain happens to all of us. It’s helped me move on and find happiness and joy in my four living children. Of course in sharing her pain so publically she has opened herself up to the scrutiny of others, but it seems quite unfair to judge her. She is handling what was initially quite a shock, with such grace and hope, integrity and character, and tremendous courage and I hope we can all learn something from it. Something about stereotypes that come, frankly, in all forms and keep us from seeing the good. Cuz really that is all kelle is saying here, that at first glance she didn’t see, didn’t recognize, but she dared to take a deeper look and the world changed and what she thought was going to be so hard turned on it’s head and became unimaginably wonderful. That’s the real deal baby, rose colored glasses optional! Keep rocking it out girl!

  356. Anonymous says:

    I think Becky said it all: “she is a gorgeous baby and you are a fabulous mother.” Keep on keeping on Kelle. Keep being honest!! We love you so much for it!!! xoxo

    Oh and you are lucky to have a best friend like the wonderful Heidi, and she’s lucky to have you. xoxoxoxoxoxoxo

  357. What a beautiful, honest, well-written post, Kelle!

    We all get hit by that bus at some time or another, regardless of whether our child has special needs or not. I, in all honesty, can’t imagine my life without my 2 boys, but knowing that my second was my last, I did have that tiny painful twinge of hurt/longing (whatever you want to call it)when we found out he was a boy. I occasionall still wonder what things would have been like if I would have had a girl – but I don’t dwell on it. I’m so very blessed, and God certainly knew what he was doing when he blessed me with my two boys. My youngest has a congenital kidney disorder and only has one functioning kidney. I get hit by that bus every once in a while – worrying ….will he need a transplant someday?…..am I a match?….will the good kidney continue to work?….will he have any other complications down the road? While I think it is okay to have these concerns and get “hit by the bus” every once in a while, the important thing is that we get up and dust ourselves off.

    Rock on mama! :) Much love to you and your family. Have a blast in Key West!

  358. Anonymous says:

    To Chris above: Believe me, Kelle appreciates the beauty of the rain. Please read carefully before you post.

    http://www.kellehampton.com/search?q=rain

  359. I’m a mom of a sweet daughter (7) who has a rare genetic syndrome… Early on, an experienced sped teacher kindly held my hands and told me that such “ambush” moments were bound to happen, but from what she had seen, the sting would lessen over time. And I think that is true. I still get ambushed, but the positiveness and beauty I usually focus on gets me thru.
    Your blog just breathes forth this beauty! It will help countless others, too.

  360. oh my sweet girl…life is just full of really incredibly picky people (they make me nuts and i am actually being gracious calling them just picky..a few other words come to mind but we no go there)…but on the flip side it is also full of incredibly good people! and i am seeing more of the good ones on this site loving you and your family…just remember that! people until you are leading a perfect life..zip the lips and work on your own deal. i am feeling good karma from this point on…seriously people, have a mojito with a twist of lime and a touch of mint..catch the happy bug and enjoy the blue skies and the fact that people are living happy lives ..oh forgot the rose colored shades..they are a must!

    you are blessed to have a friend like heidi..she cracks me up..i wanna see the orange jacket!!HA!! just grove this one out in kelle hampton style and you’ll be just fine. ♥

  361. I have to say…everyone IS entitled to his or her own opinion; HOWEVER, as Kelle said, she shares only a small part of her life with us…a life most of us ONLY know because of what she shares with us. She is a good, caring, inspiring person with a wonderful heart…a mama who loves ALL of her children for who they are. I know all of this only through reading her blog…so she must really be amazing in person! :)

    Keep your head up, girl. You are AMAZING! Living your life the way you do is a GIFT. Don’t let anyone tell you otherwise! Enjoy your vacation :)

  362. I just want to say that I absolutely love your blog. I have been following it for a few months and you are everything I want to be. I am a mother of two boys with one on the way and just recently found out that my 2 year old has autism. My world has been rocked to the core, and I could not find my way up for the longest time. But every time I read your blog, I see your attitude, your outlook for life, you inspire me to be better, to be more positive. I think you are an amazing women and mother and I thank you for sharing your thoughts and experiences with the world! Thank you! -Kristin

  363. Kelle –

    Like lots of others, I’ve read your blog for awhile but never posted. One thing that keeps me coming back is your raw honesty and the way you share your life with your readers; sometimes I feel like I really know you. And your outlook is great – life is made so much better by looking at the glass as half full rather than half empty. I like what one reader wrote about DS being apart of Nella’s life but not defining her life. My Mom has a cousin with DS who is 56 and we love him. He loves going to “work” (his daycare), drawing (he has hundreds of colored pencils), and showing off family pictures. Because of my Mom’s love for him, she taught us the importance of not calling anybody (with or without DS) retarded or saying something’s retarded.

    Nella is adorable and so is Lainey!

  364. Oh, and I had to just laugh at those who wonder why the boys aren’t in more pictures…do you know how hard it is to get boys that age to participate in a photo shoot? Did you ever wonder if boys at that age want their photos on a blog? Did others realize, at a certain age, one asks the boys? Yes, I wonder if step sons are called that because they enter your heart step by step…and you respect those sweet steps. Those wonderful boys are great big-brothers and deeply woven into the fabric of the family. There is a scripture passage I love and try to live by…reminding us to believe the best in others. Some have been pretty tough on a tiny little selection of commenters…but they, I believe, meant no injury…they are simply at a different place…and things look different from “there.” We are here…and happy here. I am enjoying so my four funsters…the boys are out snorkeling and I have two pretty girls on my floor…who could ask for more! I can hear the music!

  365. first of all this picture of Nella is so breathtaking! It is perfect! I love it! This post touched my core…as lots of yours do. My sister in law and I were just talking yesterday about something similar. She had a baby girl 4 months ago who was also born with down syndrome and we were talking about how different your perspective is from those first scary moments of this new road in life, but we were discussing how in a way we feel sad for those who don’t have someone with down syndrome to love because they will never know the joy that it holds. It is unexplainable! Yes there are many days when that bus hits , but like you said it hits even in the “non down syndrome world” when Bree was born someone asked my husband how he was…and he said “yeah she is going to have challenges because of down syndrome but what child doesn’t have challenges? Bree’s will be different challenges but whose to say they are harder or easier than other challenges” I have to say I wouldn’t trade this road we have been placed on for anything and I am grateful to be on it!

  366. Hi there.

    This blog is called Enjoying the Small Things and I expect to be enjoying the shit out of small things every time I visit.

    People who do not wish to enjoy the small things should find a blog that suits your unique interests. You will not find me there and you will probs have to create an account and out yourself.

    HALF FULL!

  367. Oh dig…I dig you! I don’t believe I have ever before found a sentence that included the words enjoying and shit together. I am laughing in Key West, where the motto is One Human Family!

  368. Kelle (and commentors) wasn’t implying that you didn’t appreciate the beauty of the rain. I think it is clear you find the beauty in all things.

    The point I was trying to make is that it is ok to have bad days.

    I am a bit farther down this Down syndrome road than you. In the beginning, you are aware of the Ds, but it isn’t really that obvious. As you child gets older, the delays become more obvious. That bus may be back. There may be more layers to peel off.

    And it is ok, because there are people out here who get it. The good, the bad, the amazing, the scary, the beauty, the reality, the fairy tale.

  369. Rhythmic Movements… I did not read through all the comments so I don’t know if somebody already mentioned this… It actually IS common for children with DS to “stim” or make rhythmic movements to stimulate and soothe themselves. My own little one bangs her head on cushions or her bed mattress when she is feeling over-stimulated or just ready to sleep. It’s just her… just something she does, just like my older daughter still sucks her thumb in her sleep sometimes. Sure… it’s part of Down syndrome, but Down syndrome is not what defines our beautiful children :o)

    One thing we did learn along the way is to only allow “stimming” behaviors at sleep time (it’s a little hard to prevent when everyone is in bed). Children allowed to stim throughout the day may have a higher risk of developing other autistic characteristics… although in my opinion I think this may be a rather chicken-or-the-egg theory. At any rate, we always redirected our little one when she started, and now she only does it occasionally in bed :o)

    HUGS

  370. Okay, completely OT, but what is with the posting and then the post disappearing or appearing 6 times deal?

    So much judgement. Sad really. And to what end and for what purpose? It comes from a place of darkness. I choose light every chance I get, even though it sometimes takes a whole bunch of effort to find it.

    A child with a ‘syndrome’, ‘condition’, or ‘disease’ is not by virtue of having that condition ‘just like’ any other individual with the same label…just as the family who loves and supports the child is not ‘just like’ any other family. Is there one clear road to successfully parenting a child with special needs? Hell,no! You’ve got to celebrate the child’s strengths and support them when they struggle. Kinda sounds like parenting a non-special needs child, doesn’t it? Sure, the struggles might be bigger, but the celebrations can be too…if you let them.

    Medications, therapy, IEPs are merely tools to help the child. My kids have these tools in their lives, but it will not be these memories that stand most prominent as they grow. Drive-in movies, beach trips, squeals of delight at 50% off signs (I know I should really learn to control myself), guitar recitals, hockey tournaments, snuggling on sleepy mornings. We can’t control every memory in our children’s psyche, but we can make damned sure there are a bunch of wonderful ones there to define childhood for them.

    Positivity is not denial. Denial is failing to get your child the necessary help. That’s not what’s happening here. If help can be sought, perpsective kept, and joy found then more power to you. Worry is as inevitable as it is useless, but dwelling in it is letting yourself be defeated.

  371. I would like to no what “normal” is anyways and who defines it and says that something qualifies as normal. I have 5 children and each of them is completely unique and beautiful and amazing in their own unique way. My daughter has 21 beautiful chromosomes. I have come to a place where I know that there is nothing in this world she cant do and she has the same potential as every other child does, and like every other child some have to work harder than others and to some, things just come a little easier. So when Nella hits her chest, she is just feeling the beat of her musically beautiful life and she cant help but feel the beat….listen and you will feel it to

  372. Anonymous says:

    DS along with autism is becoming increasingly common. She may be stimming. I would make sure to have the therapists keep a close eye on her (and make sure they have a thorough background in autism) and take her for evaluations by Developmental Peds., Neurologists and Neuropsychs. early on just to be sure. Can’t really diagnosis her at this age but good Neuros. are diagnosing earlier and earlier.

  373. Great post, Kelle! Thank you for the reminder that we will all experience those “what if” moments whether on small or large scale, and a BIG thank you for the inspiration to take those “what ifs”…answer them with a “so what”…and appreciate all the beauty that we are blessed with.

  374. Anonymous says:

    Oh Kelle. You are doing this family thing your way. And your way is gorgeous. Do not be scared by other scared parents. They can do it their way. You keep on doing it your way mama. It is a beautiful thing to behold Kelle. Do not be afraid of your beautiful future. You will rock it out and Nella will be just wonderful because she has so much love around her. THAT is what matters Kelle. But I’m preaching to the choir with you. Sending you so much love. Mary in Texas xo

  375. me thinks some readers need to head over to babble and pack themselves a fabulous picnic.

  376. Ah, I DO have triplets…and two with special needs…but you are right there are so many other things that I do NOT know about…I have been on this ride for 13 years, and I have to say to you that I still have THOSE days and on them, I would really really like the ride to slow down a bit…but I would NEVER want to get off!

  377. Kelle I missed reading your blog. Love the picture of Nella…so cute.

  378. Simply and utterly beautiful, made me cry.
    I love your words.

  379. When we had Madison I did the complete opposite of you. The first 2 weeks were a complete blur of appointments and tests and family and friends coming and going and a horrific scare that had us taking her to the e/r at 10 days old which thankfully turned out to be nothing. After that scare I put it into my head that I had to be the best advocate there ever was. I immersed myself in books, Internet websites, and got involved with the local foundation. Now I know so much about Down syndrome it hurts my head. I wish now I could go back in time and get those precious hours I spent researching and give them to my girls. I know now that was simply my way of coping but regardless I wish I had that time back. Now I’ve learned from my mistakes and I’m spending time with my girls reading books to them instead of reading about DS and by focusing on my family and not DS I find that the bus passes me by and hardly ever touches me and when it does it’s just a tiny bump.

  380. Although my son’s chromosomal disorder wasn’t known at birth, I understand the feelings! I want him to be known as the amazingly handsome little boy he is and not the boy who has an extra part on his 16th chromosome and who is autistic. There are things he does that are “typical” little boy things and things that aren’t so typical.

  381. First, I know I am the 389th person to comment and most of us have said that we LOVE your blog, so that said…it is so much more.
    I recently shared your blog with my mother-in-law (who is the only person I know NOT on facebook, or she would have seen all my posts of your blog) and she works in a NICU and she also loved everything about your blog (including your play list). We have both had the opportunity to work with small babies of all kinds and your honesty has given me a new view of parents dealing with the unexpected, so THANK YOU!
    Second, you are GORGEOUS and it is easy to have a “mom-crush” on you because you seem to have it all together, but the part I love…are posts like this and when you talk about your messy bedroom, because that makes you real. Your girls are so lucky to have such a great mamma! Thanks again for sharing your family with us.

  382. “Parenthood is hard and beautiful. Scary and rewarding. Sad and Happy. All at once.”
    Amen sister, amen!

  383. Poppa I hear the music and me and my Littles are rockin out to it!

  384. I totally understand how you feel about life taking center stage and the ds moving to the back. We have a daughter as well that has DS and most days I don’t even think about it until I see another child about the same age doing more then her.

    I understand how you are feeling 100%. I really enjoy reading your blog!

  385. Kelle,
    you make me want to be a better friend, wife, and mom.
    thank you :)

  386. I was just thinking about you as I cleaned up my kitchen. I thought so long that I even removed and cleaned out the burners, so thanks for that :)

    You are a stranger to me, yet through reading your blog there is no doubt in my mind that you have a beauty and light that graces all the lives you touch. You have gernerously extended that grace to us…total strangers who find your words and honesty uplifting and inspiring. Spending a couple of minutes reading your blog every couple of days reminds me of the truths I know but sometimes lose sight of as I run around my life like a headless chicken. I thank you for that perspective delivered in such a warm and gentle manner.

    Here’s the BUT-Are you sure you want to go there? You are becoming, in a life leading me to unexpected and unusual places kind of way, a bit of a reality star…which is great for us, but is it for you and your loved ones? Are you sure you want to let the darkness that is out there so close to the light you’ve created and nutured?

    None of my business, dear stranger, and I hope for my sake your answer is “damn right, I’m going to let my light shine as far and wide as I can”, but there was a backlash here that was mean and personal and poisonous. I would completely understand your backing away and protecting what you cherish.

    Take care.

  387. “Loving littles is one of the greatest, most wonderful things that will ever happen to you. And the minute you welcome one into your life, you inherit a thicker skin…because the bus will hit you plenty of times to the point you’ll think you damn near died. But you don’t. You pick yourself off the ground, dust off your knees…and move on. Because beauty awaits. The beauty that fills in all the holes and rough spots.” – This is the greatest, Kelle. I’m bookmarking this post to save this. Nothing truer then that.

  388. Anonymous says:

    @ Sandra aka TUC

    You want your daughter with Ds to be accepted for who she is.You know there are a lot of people that don’t want children with Ds. That’s why you are in the process of adopting 2 little girls from Eastern European.

    You should be happy that Kelle is changing people’s minds about Down syndrome. You should be happy Kelle is creating so much positive awareness all over the world.

    Kimani, Mallory & Peach are precious.

  389. Anonymous says:

    I wish the people passing their negativity farts would grab their haterade, go home, and stop stinkin it up for the rest of us! Some of us-correction, a lot of us- hear the music and love your rose-colored glasses!

    Thanks for what you do, so beautifully…

    Carmen in Boston (therefore, not really anonymous 😀 )

  390. Anonymous says:

    Everyone has ups and downs. And everyone can choose how to best deal with their trials and tribulations. I believe that it’s important to be honest with your readers. They are looking to you for insight. I read where some Mommy’s could take on the role of a child with disabilities. Because it seems so easy. Life is not easy raising a normal child, let alone a child with a disability.
    I respect the commenters that want to remain anon. I wish not to be called I have no “balls” or haters! It is people like you who were the school bullies! And I pity you and your family.
    And yes I do hear the music and dance with only one leg. I bleed, I cry and I love the same as you. To see 3 children killed in a car accident while the parents watched in horror. This is life. Yes, not always as we hoped and dreamed, but life. The good the bad and the ugly.
    Respect, love and enjoy the little things in life!

  391. okay, seriously, it is late and i’m tired, like stinging eyes tired, but i got sucked in reading the comments to this post – and i’ve only read a couple!!

    i’ve gotta say the only way to do it is HALF FULL, baby!

    lovin’ you and all your amazing friends (and family), kelle!

    *heidi, your comment was beautiful!
    *and, dig, you had me cracking up!!

    sweet dreams …

  392. Anonymous says:

    Kelle, you are SO LOVED by your readers. I hope that’s what you take away from these comments. XO

  393. Kelle,

    Not sure what amazes me more about this blog — the beauty, the words woven together so beautifully that they can touch a heart instantly, the gorgeous photos of Nella and Lainey, the love that oozes out from this blog over your girls and your family, or the grace and class that you, Heidi, and Poppa have exuded during this whole ‘debate’ here in the blogging world that is Kelle Hampton. You continue to inspire and teach us and I for one am so humbly grateful. I just need to keep reading and learning from you and your awesome perspective on life to hear that music that Poppa mentioned, although I would be more than thrilled to enjoy a coffee on the lanai with you any day of the week! (And hold little Nella, too!)

    Sending extra love to you and your family down in Key West! Hope you are making wonderful memories with your littles!!

    Love,
    Angela

  394. Anonymous says:

    Chris, I can totally get what Kelle said about a baby’s gender and Down syndrome. I’m happy that Kelle has been able to accept and acknowledge Nella’s diagnosis so gracefully. I know parents of grown children with Down syndrome that are still coming to terms with the diagnosis, they still can’t accept it. Also, I think the best way you can help your son is to focus more on all the things he CAN DO. Rosemary

  395. Well that was a great post…you make me happy to be a mommy! As always thanks for sharing not only the good but the bad and the ugly also. Getting hit by the bus is very unfun, but its so part of life and if you let it, it will make beauty. You do that, thank you!

  396. Teared up reading this. Thank you for your honesty. While I respect the Annonymous comments above, I just wish that negative feedback would be delivered with the same grace as your response – should be an openminded give-and-take so we can all walk away with someone more to make like a little more special. Kudos to you for beautifully and graciously responding to sometimes rash generalizations made by other readers.

    Continue embracing life and enjoying the small things. Come what may, as long as you have each other and you see God’s beauty in your world then everything WILL be sunshine and roses. Maybe not by other people’s standards but it will be a perfect life you you. I believe that and whispered a prayer for you.

    Sorry for the longish comment… I felt compelled to send some positive jujus after seeing some stinging comments above. *hugs* :)

  397. My nephew was diagnosed with autism today.

    I took a page out of your book and sucked the marrow out of life today.

    http://robynnealane.blogspot.com/2010/07/yes-just-yes.html

  398. You always brighten my day with your lovely, and truthful words, and your gorgeous photos. Those girls of yours are truly beautiful. You are so blessed and I love being able to read about your journey of being a mother!!

  399. So well said. There will come a day, if it hasn’t already, where you’ll be thankful that Down syndrome has graced your life because of it’s part in making Nella the unbelievably superb person she is.

  400. Yes, those bus moments will continue to come, often at the most unexpected times. As the years go by though, they hit less and less. You just keep on keepin’ on! :)

    Enjoy your vacation!

    Laura & Ryan
    http://nowimamom.blogspot.com/

  401. Ok I was going to post and be all riled up on kelle’s behalf but then I read this annonymous post from Carmen in Boston and I can’t stop laughing –

    “I wish the people passing their negativity farts would grab their haterade, go home, and stop stinkin it up for the rest of us!”

    Negativity Farts = Bwahahaha!

    “Negativity Stinks!” I feel like I should put that on a sign and start picketing it somewhere.

    Isnt it awesome that you have so many friends that are willing to freshen the air with the febreeze of positive comments?!

    xoxo

    can’t wait to see pics from key west!!

  402. Anonymous says:

    Team rose colored glasses!! Love you Kelle!!! My little has DS and your outlook has literally changed my whole perspective. I am a better mother because of you, your words, your example.

  403. I have been following your blog for some time now and I absolutely love it. I am compelled to comment on this post … I so needed to hear these words today. Thank you so much for sharing your life, your girls and your wisdom. You are amazing and inspiring and I am so very grateful to read this today.

  404. Poppa LOL – you hit the nail on the head about boys that age and pictures and being on a family blog. I am taking a ton of pics of my 6 month old ( with my new camera thanks to Kelle). But my 13 year old is out playing with friends, etc. When I try to take an incognito shot of him he makes a goofy face or accuses me of trying to be dramatic :). He is a ” step son” to my husband and the love that has grown between them Is so special because it has been earned and cultivated not automatically inherited.
    Kelle – thank you for sharing the ” bus moments” as they help all of us as much as the positive finding the beauty posts as we are all our human and go through easy to be happy times and sad so unfair events.
    And thank you for leaving the “negative comments” as the comments that it reacts also shows the reality of life and how all of your followers are sticking up for you and how we can learn from bad and good.

  405. Anonymous says:

    Any way since you have everyone’s attention. Could you please stop the name-calling, And Poppa, I know your trying to protect the ones you love, so don’t feed into it! I don’t think it’s good for positivity. Maybe you could do a blog on it! For Pete’s sake people. Everyone is here for the same reason. Some of your readers have become bully’s just like in High School.
    Live and Let Live.

  406. Anonymous says:

    Kelle, please know that I run activities with a group of parents with kids with DS. We all read your blog religiously and talk about it every week. It’s like our therapy as parents. Please don’t let a small group of scared parents effect how you are raising Nella. You are doing such a beautiful job, and you are such a beautiful soul. I have never seen so much beauty and love in a mama, and you inspire us to do better with our littles too. I hope you read this comment. xo

  407. @ anon

    “You should be happy that Kelle is changing people’s minds about Down syndrome. You should be happy Kelle is creating so much positive awareness all over the world.”

    I am happy about this. I think Kelle is having a very positive effect on the perceptions about Down syndrome to those outside the community (and even inside). I am glad Kelle sees the beauty and focuses on it, and has the talent to present it visually to the world.

    It isn’t really possible for me to do justice to what I have been feeling reading this blog on and off since the birth post in just a simple comment. There is a fine line between rose colored glasses and denial/acceptance, and I, as all of us must, am walking it too. I wrote a post called Say It which was my first reaction to some of what has been all a whirl over here, and I suppose at some point I may get around to another post. Or not.

  408. Anonymous says:

    TUC, I think Kelle has shown tremendous acceptance. This post is all about NOT being in denial, but accepting her beautiful Nella while still feeling scared every once in a while. What I gain from Kelle’s blog is a beautiful sense of acceptance–rosy, yes, and perfect.

  409. Lordy…what is UP with some people? I think you are amazing Kelle…I know coming from a grown woman who is a mother of 2 and another due very soon, this is a little strange, but Dude, I have a wee crush on you!!

    Listen, I know not everyone can be as loved up and positive as Kelle is…sure, these differences make the fabric of life the interesting kaleidoscope of colours it is. But seriously, why the hate? This woman is sharing with us a tiny scrap of her full and busy life with her amazing family, and some people feel the need to attack her for being TOO POSITIVE? COME ON!! If you think this, MOVE ON. Dont read. Simple.

    For what it’s worth Kelle, you inspire me. I am the mother of 2 AMAZING kids, and am one of 3 sisters. I didnt know boys, had no idea how to raise boys, couldn’t even imagine myself ever having a son. But I do, and I ADORE him…of course I do. Because like you were saying in your post, thinking that you know what you want, what you percieve your ideal family to be,no matter what the reality turns out to be (boy instead of girl, daughter with Ds v’s not) this is your reality, your family, and you accept and love it with all your soul. End of.

    You rock Kelle, and don’t ever stop. By the way, your Daddy seems to be only the bestest Daddy in the world. You, Poppa, also rock 😉

    -x-

  410. I absolutely love reading your writing. Have you considered writing a book or something?

  411. A number of years ago my son had an eye appointment with a neuro-ophthalmologist. He was near UCSF so we drove up through Haight Asbury. Due to my son’s brain injury he has some unique issues with his vision. In an attempt to cut down on glare ,which troubles my son, the doctor prescribed rose colored glasses.
    I have always loved this rx and think we should all have it filled!!!! Here’s to optimism.

  412. Anonymous says:

    Team half full. That’s why I come here. Love you Ms. Kelle. xo

  413. Anonymous says:

    Team half full. That’s why I come here. Love you Ms. Kelle. xo

  414. Anonymous says:

    I think the thing that struck me most about this post were Kelle’s husbands words “Is this normal? Or is this Down Syndrome?” And then her words, “Is this normal?”

    As the mother of a toddler with Down Syndrome, I can tell you that one of the first things my husband and I did was strike the word normal from our vocabulary. Most parents of kids with DS use the term “typical”. It may be PC, but to use the word normal implies that what your daughter is doing is..well…abnormal. And it’s not. It’s just her, part of her and her personality.

    Reading that makes me wonder how much this family has really accepted the diagnosis, and really understands what Down Syndrome is and what they are dealing with. Claiming that your acceptance of Down syndrome is much like an acceptance of having two boys makes no sense and quite frankly shows that there is still denial going on.

  415. Kaitlin Cole says:

    Kelle I love reading your blog. Such encouraging words to every mama in every season of life! Your decisions to love (not just like, or deal with) every aspect of your life is such a refreshing aspect to read. As a stay at home mama I love that you embrace and rejoice in the trials of life.

  416. oh crap..double crap…triple crap! I was hoping to get on here and not see another annoying..oops i mean anonymous comment.

    “typical”…”normal”…aren’t you kind of splitting hairs on that one. so you chose a word that you think is more appropriate then the other..hmmm…it all comes back to personal choice as how to handle your personal situation. oh my goodness. please for the sake of all who do not read things into this post that were never there…stop with this foolishness.

    what i see is not denial..it is acceptance of what is ahead of them..and wanting to do it with a good attitude. maybe it is not how other people do it but does it make it wrong??? from where i am looking i actually see them taking the postive road down this long journey they have ahead of them..is that wrong?

    what prompted this whole negative tone was what i believe could be called..hmmm..misunderstanding, jealousy, envy and even fear.

    peace people…seriously this family is a family will that will love, nuture and handle ANYTHING that nella bella has in store for her…and they will do it in true hampton style..i am so excited to share their journey. ♥

  417. It’s crazy how much reading these comments hurt my feelings and they weren’t even directed to me. It outs me in instant defensive mood like when someone attacks my family. I have grown to love Kelly and her family and it bugs me that someone feels the need to tell her she is wrong for feeling the way she did. Her feelings are hers and its just ignorant that someone thinks she shouldn’t feel that way.
    With that said, Kelly you have an amazing following and I love reading about you joys and your struggles. Please don’t stop just because someone cant handle your honesty.
    Megan from Missouri (Mabrey12@yahoo.com)

  418. Ugh…the judgment…it burns.

    Love your blog Kelle. I wish I could live my life as open and with as much happiness as you.

    God bless you and your girls.

    Nella is so stunning.

  419. Danielle says:

    I love that bit about never knowing what’s it’s like to… but that’s okay because our lives are custom-made. Thanks for the reminder!

  420. Ooh, I normally wouldn’t comment on the blog of someone I’ve never met, except for that little line… “I’ll never know what it’s like to have triplets”. I stay in my comfort zone so normally I wouldn’t want people to stumble across my comment, or for you to end up reading it… or not reading it and skimming over it..

    anyways, I’m a triplet. Triplets run in my moms family. I have two triplet brothers who are identical. I don’t know what it was really like raising me and my brothers, but my mom did it. She’s Super-mom, believe me. Once in a while she’ll tell stories about when we were babies, and just trying to keep all three of us out of trouble, and I have so much respect for her!

  421. theenglishgirl says:

    Great out look and one that I need to apply right now. Thanks Kelle

  422. Anonymous says:

    You know what, anonymous commenter splitting hairs about the words “normal” and “typical”? Kelle is on a journey. She is growing and learning at her own pace. If she hadn’t accepted Nella, do you think she would be blogging? Do you think she would be putting herself out there? Kelle’s journey may be different from the one you’re on, and that’s okay. What really makes me angry is special needs parents (and yes, I am one too), who are sanctimonious like you. I come to Kelle’s blog because she uplifts me. She makes me a better mother, a better human being. Sorry to be so blunt, but based on your attitude and your condescending judgments of this beautiful, loving family, I would not visit a blog run by you. We come to Kelle for inspiration and positivity. If you don’t think she’s sad enough, go somewhere else. Seriously. People like you just make me livid.

  423. Hey Kelle!
    I know it’s not the whamming herself in the chest that this post is about, really, but I wanted to tell you that my Anna, 20 days older than Nella, has been doing the same thing!! She whacks her toys on her legs over and over. I thought it was sort of strange, and I’m sort of relieved to hear Nella is going through that stage, although it is kind of funny, because you’re right, how do you google something like that?! And googling things never makes me feel any better!!
    Love,
    Kelsey

  424. love you!!!!

  425. Anonymous says:

    Kelle you are the best mom ever. Nella is so lucky that you are not projecting all your own insecurities on her like other scared parents! You love her so much and you treat her like she is the most precious gift! Do not change one thing Kelle!

  426. I don’t know how I came across your blog but can I just say…I love it. And you are truly inspiring. Oh and your girls are truly beautiful! :)

  427. Anonymous says:

    Beautiful.

    Please keep writing.

  428. Anonymous says:

    Hmm…I am not sure I “get” why so many people are outraged by some of these comments. Yes, some of the posters have expressed themselves less than tactfully, but they are making some valid points. Kelle’s blog has gone very, very public. She’s been in the news media and she is writing a book. Obviously the more attention she gets, feedback (both positive and negative) will follow. I suspect Kelle can handle criticism just fine and takes it with a grain of salt. If she can’t, then she needs to honestly rethink putting herself out there so much.

    I am the mom of a little girl with Down Syndrome. I “get” what she’s doing. I think she’s done a great job of raising awareness about Down Syndrome among the public. Certainly many of her readers are people who have otherwise not exposed to DS, and thus are learning a lot from her on her journey. That being said, I would be lying if I said I could relate to her. Her coping mechanism is vastly different from mine. I am not saying I am right and she is wrong (or vice versa) but I grieved very, very deeply my first year. It took a long time for me to heal, and I still have moments. Most of the moms I know with children with Down Syndrome have gone through a similiar process. Quite frankly, one of the most honest things I ever heard said was from a mom whom I respect immensely, who has an amazing love and devotion to her daughter. She told me that she still sometimes cries at night wondering what will happen to her daughter in the future. I often feel the same way. It doesn’t mean we love our children any less, or that we are lesser mothers. It’s just that we have a different perspective.

    Kelle is lucky that she has had such a tremendous support network. I am sure that that has helped her immensely. I unfortunately did not, which is one reason why it probably also took longer for me to heal.

    I worry a bit because there does seem to be sort of a “good mother”/”bad mother” dichotomy on this blog, where posters who disagree with Kelle are automatically dismissed as jealous, or unable to cope with being a parent to a child with special needs. Parenting styles differ so vastly, whether your child is typical or special needs (yes, actually, the word normal is often frowned upon by parents in the special needs community, it doesn’t particularly bother me but I know it bothers others so I don’t use it.) I am very different from Kelle Hampton in general and have a different parenting style regardless, so it doesn’t surprise me that our approach to our child having Down Syndrome would differ. Again, it’s not that one of us is right and one of us is wrong. We just all parent differently.

    I do think it’s important to have differing opinions on this blog, and for people to feel comfortable posting that, as long as they say it tactfully. I am sure Kelle values all feedback, as long as it is constructive.

  429. Anonymous says:

    As the mother of a handicapped child i will say that i see so much of what it happening on this particular post happen in real life.

    My husband and I try to look at our situation with the “half full” attitude while some in our situation opt for the “half empty”. That does not mean that we do not feel the same things that other parents do, we just process it differently. But I have found for some reason that the “half empty” parents tend to attack our approach while we are not so bold as to tell them how we feel or how we think they should feel. I am not sure why this is but it has been our own personal journey.

    I have been following this particular post and have not made a comment up to this point but feel that this may be my opportunity to get some of this off of my chest. If you do not like the “half full” way of thinking, well to each his own, but please do not be surprised when you are called out on it. Just as you feel you have the right to point out our shortcomings please do not be surprised when you get a response, freedom of speech goes boths ways And up to this point I have not seen anyone call anyone else a bad parent, please don’t put words out there that are not there.

    I worry that for some reason the “half empty” feel the need to challenge the “half full” when they express their way of approaching similar situations. I often wonder if it is the fact that maybe you would like to take the “half full” approach but do not know how to get to that point.

    So with that being said, Kelle I would like to tell you that I follow this blog because you mirror our approach and it is refreshing to know that their are parents who do so.

  430. Anonymous says:

    I think the reason why the comments are upsetting is that Kelle is sharing her heart and it seems rude to me that someone is trying to say that she was offensive in the way she chose to explain her heart! Obviously, Kelle, has a pure heart and she didn’t purposely try to offend anyone! Why would you do that to someone? The questions are judgmental, in my opinion, and since Kelle expresses herself so well, I am dumbfounded that someone would even suggest because she doesn’t have more pics of her stepsons that she does not love them? huh? Or that she is in denial because she chooses to wear rose colored glasses!!! So now she isn’t politically correct because she used the word, “normal”? Unbelievable! See how rediculous it all starts to sound? Lighten up people!!!

    Kelle, you keep doing what your doing! I love your website and I continue to come because I love your heart! I do get it! I too am raising a child with Down Syndrome and there are so many families I know that choose to wear the rose colored glasses too!!

    Cheers, from a mom in
    Sunny CA who is rocking out with her rose colored glasses! Woohoo!!

  431. scruggzy says:

    You nailed it with a golden hammer!! The bus hits us all. What we do with the pieces left behind is what defines our character.You seem to have learned that getting off the bus at YOUR stop offers opportunity that the other stops can’t offer. There really is beauty and pain in every life. There is such a fine line between the two and we can’t have one without the other.You describe life poignantly.Thank you. The bus hit me hard 30 years ago, and I still feel the bruises. My sons have proven to be the salve to ease the pain. It will never go away, but it is bearable and I am thankful! Now, stop blogging and fgo kiss those babies!!

  432. Anonymous says:

    There are 10 million children in the United States with “special needs” and due to increases in survival rates of low-birth weight babies, this number is increasing.

    So this “community” of people, parents who have kids who are “different” – many of them celebrate the differences that their children have.

    Let’s all take a page from that book, and celebrate those differences…differences in parenting styles, grieving styles, differences in self-expression, differences in what color glasses we wear, differences in the perception of the level of liquid in the glass from which we imbibe.

    Let’s not get into the comparison of pain pitfall. Most comparison is a pitfall.

    Your miscarriage at 6 weeks isn’t as bad as Julie’s miscarriage at 20 weeks which isn’t as bad as Mary’s stillborn at 38 weeks which isn’t as bad as Susan’s baby who died of SIDS at 7 months which isn’t quite as bad as Monica’s teenager killed in a car accident at 19.

    We all cry. We all suffer.

    And we are all waves in a sea. We have our moment to rise, to dance, but we will all return to the sea, sooner or later.

    And not one of us are promised a tomorrow. But in the meantime, let us dance, let us be passionate, lit up by life, inspired, let us be generous, let us give more than we take, let us laugh much more than we cry, let us comfort the hurting. Let us bring wonder and possibility, where there is resignation, cynicism or despair.

    Whenever I’m upset about some silly expectation that was thwarted, I recall some facts that a friend recently sent me, kinda puts all my meager problems into perspective:

    “If you have food in your fridge, clothes on your back, a roof over your head and a place to sleep, you are richer than 75% of the world. If you have money in the bank, your wallet, and some spare change, you are among the top 8% of the world’s wealthy. If you woke up this morning with more health than illness, you are more blessed than the million people who will not survive this week. If you have never experienced the danger of battle, the agony of imprisonment or torture, or the horrible pangs of starvation, you are luckier than 500 million people alive and suffering. If you can read this message, you are more fortunate than 3 billion people in the world who cannot read it at all.”

    I think most of us can relate only to the “fortunate” side of this equation. So let us count our blessings, own our “custom-made lives” and try to contribute to others, to ease the burden of those around us, in the world, and in the blogosphere.

    -Promise

  433. Anonymous says:

    Kelle,

    I happened to come across your blog a month or so ago. Everyday I find myself running to the computer to read your words. In saying that…I want to thank you for being REAL and HONEST. It takes courage to put your thoughts down let alone let THOUSANDS of people read them. You are incredible. Thank you for sharing your heart!

    Erin Dedrick
    Chandler, AZ

  434. Anonymous says:

    “Anonymous said…

    I worry a bit because there does seem to be sort of a “good mother”/”bad mother” dichotomy on this blog, where posters who disagree with Kelle are automatically dismissed as jealous, or unable to cope..”

    I say:
    Hear Hear.
    There are SOME (not all, thankfully) self-confessed ‘glass-half-full’ people out there judging and bandying about with smug comments which interestingly, usually follow a little sermon on how we should live our lives. I did not realize that to possess a positive attitude, one must accept everything everyone says?? A lively debate, of which this rates highly, is something most of our fore fathers fought dearly for. Jean Paul Sartre, the famous French existentionalist phhilospher said (sic) “I may not agree with your position but I defend to the death your right to say it”. But if I may add to the Great Philosopher’s advice by saying that everyone should present their ideas respectfully and without resorting to patronizing comments. This is the literary equivalent of giving a child a few pats on the head. Hear the music? I believe that everyone hears the music but perhaps interpret it in different ways.

    Viva la difference!

  435. Shining says:

    Wooo Hooo to both Anonymous writers up there. Well said! Maybe the tide is turning. This is the sort of stuff that is good to read.

    I was going to add my little bit but hey! this is the way we should be going. “Avoid comparing pain pit-falls.” I for one am going to remember that one.

  436. Anonymous says:

    Don’t worry. Be happy

    “I did not realize that to possess a positive attitude, one must accept everything everyone says??”

    That’s right. Being positive means to accept everything everyone says and being happy for others.

    “Hear the music? I believe that everyone hears the music but perhaps interpret it in different ways.”

    Disagreed. Not everybody hears the same music. Everyone hears the music of their own reality.

  437. I just started reading your blog and I love it. Your post when Nella was born brought me to tears. You have a beautiful family and your photography is amazing!

  438. Anonymous says:

    i think the point that some of you anonymous are missing is that if you read this post the second time around, as i did, kelle is in no way comparing one pain against another. she was simply saying the pain that was first felt in HER situation no longer stings as much. she is being healed by all of the beauty of baby nella…the beauty outways the hardship. and most who experience pain or disappointment (whatever it may be) come to this point in the process of healing. not all can experience this, it truly takes a certain personality to be able to do this.

    so why is it such an issue which way SHE chooses to handle this. keep in mind that this is HER blog, one where she has always shared HER view on the HER world. i applaud her for taking this route and in no way am condeming those who go the other route. her post was not in any way telling you which way you should look at things, which is why i am stunned that anyone would critize a person for intentionally finding the good in her life. and it does appear to me that jealousy motived this..calling her a yuppy, accusing her of not including her step children in her life enough..come on now, how much more personal can you get. you can’t tell me those words would not get to any person reading this post. I can’t imagine how kelle must feel right now. to me it appears as if one was intentionally looking for a reason to be critical.

    hurting someone is not worth getting your point across..yet to some it seems to be all they care about. i don’t know kelle but i care about kelle and i think it needs to end now.

  439. thanks for sharing your opinions so openly and honestly! i had my 2nd son around the same time you had nella and was struggling with my disappointment of not having a girl. i totally get what you are saying, you always wonder “what if?” i LOVE that you look at life so positively no matter what happens, i try to do that too. your blog lifts me up and your photos are beautiful.

  440. Anonymous says:

    I agree with anony who said “hurting someone is not worth getting your point across..yet to some it seems to be all they care about.”

    This is a blog people, just a little space where a lovely young women shares her thoughts, pictures and her ups and downs. It is not a political arena where one crys “I may not agree with your position but I defend to the death your right to say it”. seriously get a grip.

    It seems like there are some who would rather sink the whole ship just so they can have the last word and feel that they are right in what they think. At this point if I were Kelle I would be thinking twice about sharing the things that some of us come here for. I hope that this does not in anyway change how she writes or what she writes about. I think that if you do not like her outlook on life you should perhaps check out a different type of blog..please don’t ruin it for those of us who have been enjoying this lovely journey and would really hate to see it ended or changed in anyway.

  441. I am finding myself sneaking away from the family to get “my hit” Which is losing myself and sipping off the joy that you elude through all of your blogs. You have a joy and a passion that most people don’t have.

    Thanks for being my drug!

  442. I adore this blog and look so forward to new posts. Seeing a new post to read and savor….oh so happy. Did the gender disappointment comparison comment bother me? Yeah, it did. But Kelle, your blog and family are lovely. You have an amazing following and are inspiring hundreds. You inspire me. Us readers can sometimes disagree and still rock out with you. It’s okay. Hope you are having a great trip in Key West.

  443. There has only been one thing so far that has taken my breath away, and that was the realization that came to me one night while I was washing my nine-month-old son’s squishy little body, that I won’t know how his story ends. I won’t be here to see it, to bear witness.

    I won’t know how his story ends.

    God willing.

  444. Kelle,

    You have opened yourself up to the opinions of others which I’m sure you can handle or you wouldn’t put yourself out there like you have.

    Everyone handles life differently, and I have personally appreciated many of your posts and beautiful pictures. I am grateful.

    I think your entire family is beautiful. Nella is a complete blessing.

    However, Kelle, after sometime I stopped coming here b/c I only saw “pretty” pictures and a “pretty” life. I need to see the other side of Down syndrome too – the reality that an extra chromosome doesn’t always play fair. You are walking the walk you must, and I applaude you. But I encourage you to take a walk on the other side sometime and visit the community of Down syndrome bloggers who are fantastic writers, mothers, and friends. We have pretty pictures and stories too, but then again we have sad pictures – pictures that tell a different story. Some are not ready for those pictures. Some do not want to see those pictures.

    I appreciate your honesty.

  445. Anonymous says:

    Faith, hope and joy – gifts of the heart uncontaminated by circumstances is what you share with others. A very wise man once said “Faith is the substance of things hoped for, evidence of things not seen.” Not crutches for the weak – but the substance of life coursing through the veins of the strong allowing them to smile at the challenges of the new day and walk seemingly unscathed through any adversities that are simply living the life that is unique to each of us. Aware? Yes, perhaps even momentarily saddened because we are human – but not destroyed or embittered by the “bus du jour”. Words are power, they are life; building or destroying. It’s a choice. I believe the majority your readers would agree with me that your positive, hopeful, bright outlook is central to what has drawn so many to your blog. We’d be proud to pack up our bushel of lemons and set-up our lemonade stands next to yours as we encourage and laugh with one another. As iron sharpens iron, so one sharpens the countenance of her friends. It is these wonderful gifts of your heart that you share with each of us who like you choose to view the world through what some may consider foreign eyes – Eyes of hope, love, faith of good things to come, and above all gratefulness – the plumbline by which we view life. Thank you for providing a lanai where parched spirits are refreshed, encouragements are shared, and hopefully your garden is watered a tad while we visit as well.

  446. Anonymous says:

    I guess the hardest part of blogging is pleasing everyone that visits your blog. I am thankful that my blog has very few followers and none so critical as the ones I have seen commenting recently on this one. What one puts on ones blog should be what the author of the blog wants to share. I for one come here to view all that Kelle wants to share. I have read comments condeming her for sharing too much and some for not sharing enough. Again she can not please everyone out there because this blog is her blog and for some reason those who read it forget that. If you do not like her style or what she shares it is easily fixed, follow one that you do like and makes you 100% happy.

  447. Anonymous says:

    @ Jasmine

    I have seen Kelle’s comments on others blogs of parents with children with Ds. Of course, she doesn’t have the time to visit them all.

    Because this is her blog, she chooses to share the beauty of her life here. I’m sure she shares her sad times with her family and friends.

    Blessings to you

  448. Anonymous says:

    Tuck this little tidbit away for times such as these.

    “I don’t know the key to success, but the key to failure is trying to please everybody.”..Bill Cosby

    Kelle just keep doing what you are doing in your own way. It is enchanting.

  449. Anonymous says:

    Kelle,

    I was so blown away by this post. As a mother of a child with DS I totally understand what you are saying. It is like DS at first seems like this big glaring neon sign that is blinding and distorting your outlook on the future, then it changes into those tiny candle lights that you see in window of some homes..still there and throwing off a small soft light but not blinding anymore. It is part of our life but not the biggest part.

    I thank you for putting into words how I felt when DS became a part of my reality, the future now has a very warm soft glow to it.

  450. @anonymous
    “Faith, hope and joy – gifts of the heart uncontaminated by circumstances is what you share with others.”….”Eyes of hope, love, faith of good things to come, and above all gratefulness.”

    Well said and I am eating up every word of your comment, so uplifting and positive. So when you set-up your lemonade stand next to Kelle’s I will be right beside you.

  451. I came back today hoping for a new post and can’t believe that the drama is still going. Kelle, I imagine you must be laughing at all the silliness or hopefully not even reading it at all. What strikes me as the most hysterical part of all of this bru-ha-ha is that it is all based on judgements that others feel that they can place on you and others because of our differences. Isn’t that the one thing that we are all in agreement about when it comes to our own children: that we want them to be accepted for who they are and not for how they are different?? How can we expect that of others when we don’t give it ourselves?? There is no manual that comes with out children that explains how we can perfectly parent them, whether they have “varying exceptionalities” or not. Nor is there an emotional manual that tells us how to perfectly cope with the mix of feelings that go along with being surprised by such a “special” child. What is beautiful about Kelle’s blog, regardless of how closely we relate to anything she shares is that she shares. She shares what HER truth is. It doesn’t have to match anyone else’s. It is her own. But to those who can relate to her, it is a huge blessing. To those who feel uplifted in anyway, it is a huge gift. To those who how find it full of positivity with a small sprinkling of raw emotion every now and then, it encouraging. And what is even more wonderful…if anything about this blog bothers you in anyway you can think to yourself “I don’t have to read this if I don’t like it” and you can move on. There is nothing wrong with anything that Kelle shared because she was sharing herself. She did not impose any judgements or moral righteousness on anyone else. If you posted a judgemental response, sharing your moral righteousness to this post can you claim the same? Allow her to share her journey, because it is a journey. Add your two cents only if your intention is the same as Kelle’s: to process life “out loud” in hopes that someone else will either be blessed or return blessing to her. Kelle, I appreciate that you put yourself out there. You and I are not exactly alike and I love that. What I love more than anything is that you have shared Nella with the world and that the people who read your blog love her and they think that she is beautiful and some are so familiar with her now that they don’t even see the Down syndrome first anymore. They see how much she is growing and that she wears the most adorable clothes and that she has an awesome big sister and big brothers. They see that she is loved so completely by her parents. And the best part…the next time that the people who read this blog notice another child or adult out and about in their own communities who lives life with a Down syndrome diagnosis they are going to smile knowingly, because they are going to know that Down syndrome is nothing more than a diagnosis based on one’s chromosomal makeup and that it does not affect that person’s value or loveability. The more awareness that is brought to our children, who are way more “typical” not, the better for ALL of us. Thank you, Kelle. Mylie and I love you and your family for sharing yourselves with us. :)

  452. Laura F. says:

    I was the child whose mother kissed her before heading off to chemo treatments. My mom was 36 when she got Stage III breast cancer. After 2 years of operations, chemo, praying and a fierce determination that her children would not grow up without their mother, my mom emerged on the other side. And during those 2 years, she “got it.” All of it. What really matters. What life is all about. One day at a time… for that was how she HAD to live. It is now how she CHOOSES to live. And the funny thing is, during those 2 years (I was 8 when she was diagnosed, my brother 5), I never remember anything of the cancer except that she would be in bed when we came home from school (she was really tired after her chemo treatments). So we would bound up the stairs and crawl on her big king-sized bed where someone had helped her to prop herself up and she was ready and waiting for us. And we would lay on her bed and talk about our day, talk about anything and everything. Funny thing, I still do that (and I am almost 35)… I lay on her bed and we talk. A sweet bond from a bittersweet time.

    And then, 2 years ago, along comes the news that she had uterine and cervical cancer. And my mom handled that with the same grace and “one day at a time” approach as she had decades earlier. She would leave early in the morning, drive to her radiation treatments, drive in the other direction to her school and be ready to teach by the end of homeroom. She did this for 6 weeks. And she had plenty of leave, she could have taken off. But life is each day, this day. So she lived.

    I always envied her perspective and longed to be like her. Then on April 12, 2009, my sweet Ian was born and rocked my world. After getting through the rawness of it all, I “got it.” After all these years of worrying about everything that did not matter, this beautiful gift of a baby saved me. My mom and I bonded in a new way. We both knew what it was like to have unexpected things happen and emerge on the other side with this sweet appreciation for what really is important.

    After watching my baby go through open heart surgery at 3 mos, I have an even deeper appreciation of life and all that makes it beautiful. Therapists in our house (besides their visits helping me to keep my house from becoming a total disaster!) are times I look forward to. They love my baby and celebrate everything he does. And doctor’s appointments (an extra every now and again) are no big deal, really. I am grateful to those who saved my son’s life and love him.

    I’ve already done things I did not think I could do, survived things I did not think I could survive. And you emerge stronger and with an even deeper appreciation for the beauty of this life. You just do it. And find love and happiness along the way. And sometimes you find it in the most unexpected places, along the most unexpected journeys.

    Having already raised my first sweet son to age 5, I know that parenting well is not easy… each of my boys is an individual, they are who they are. Ian is Ian and the Ds is a small part of him. He is much more this sweet baby who delights at clapping with everyone else, smiles so hard you can see a dimple when we cheer for him when he says “up”, and don’t even get me started on what it feels like to get a big, tight hug or a huge, open-mouthed baby kiss. Hugs, kisses, crawling, pulling to a stand, a word or two, toys all over the place, sippy cups thrown, food on the tray, floor, hair, face, you name it… he is a baby and he is my son. My son who saved me and I did not know I needed to be saved.

    Thank you, Kelle, for sharing in our perspective and shouting it to the world! LIVE!

  453. how touching it is that people from other countries write to you in a foreign language (for them) to tell you how wonderful, inspiring, beautiful you are!!! You are so loved, Kelle Hampton, and for good reason. You have a gift that makes you happy and it isn’t any “thing”or certain socio-economic status like the negative commenter implied…it is this sweet, sweet spirit who loves and creates happiness for yourself, your family, your friends and for your readers with the ways you inspire!

    I pump breastmilk in the middle of the night and read your posts (and comments) for entertainment. I recently read your 30th birthday post where you said you enjoyed being loved, and now you are one of the most well-loved women! Also, you wrote with such depth of what the 30s had in store for you, almost like your soul just knew. It is that soul that just knows… who knows the best path and I love being inspired by that path of loving life and our families and friends.
    Cheers to you!

  454. kelle, Amen , I get it! I get everything you said!
    But, when my little guy smiles, I think , I am so lucky to grt that smile, b/c there is something totally heart warming and heart melting about the way my baby with DS interacts with me, that (shhh…., don’t tell my other 4 kids) my other kids didn’t have, so there ya go. I “forget” too, until someone holds him and his head still flops back or down, and I have to remind them to hold his head. I get it, Kelle, but I am in a happy place in my heart – and enjoying every minute of mothering Leo.

  455. Anonymous says:

    Pecore sono senza personalita.E mettere un altere un perfecta Dona.Eso solo os macanti.
    Kelle e espone un solo che la tua privacy e la tua famiglia, egocentrico per poter credere che sia perfetto.e felice nel tuo blog e previsioni tutto non e reale..qualcuno ha bisogno di dimostrare la sua felicita pubblica,solo che no e felice, il tuo blog e sentimentale pornografia.Un upmo che dice di amare la tua famiglia e le mostre in questo modo!!!Qualcuno che si impregna 750 in fotografias a una riunione di famiglia, questo e normale?Just pensare che making situazioni felice di dimostrare cio che e ,e tu il culto? vite sietecosi vouta, che avete bisogno di os Kelle ovbias ricordate che le cose che como conto.
    LAPIDEIS PRONTA PER ME.
    Anonymous,Peter,Willie, Pam, Clinton…….

  456. I do believe Kelle is feverishily writing and selecting photos of our recent hiatus in Key West. It will be good to turn a page. It will be nice to take a breather from the banter. We are all about the same thing, folks…celebrating one human family–all with special needs. We are in different places in the book…enjoy the page we have open. We really need each other. No one knows it all. We wound with words, when, rearraging them a bit, we might share some strength, understanding and healing. It has come here from other languages and other worlds. People who have never known anything about Down syndrome are reading…watching…listening. What do our words tell them. I put her to sleep in my arms the other day with made up songs sung into her cut little ears. We really love her and she will lead us on the journey.

  457. awhhh poppa..how is it you know exactly what to say. your words are like breathing the fresh open air after being confined to a air of house that has been closed up for some time. breathe and enjoy..so i take it you are the original rockstar that has trained up the next generation of rockstars

    that being said i can’t wait for the next page in this lovely book…it is like reading a series book..you wait anxiously for the next release. i am so honored to be able to peek into this lovely nella bella’s journey…makes my heart happy when i see her fabulous almonds eyes and her betty boop smile.

    peace to all and can’t wait for the next post…and i will let you in on something..we really love your nella as well. ♥

  458. Yes, Gracee’s Momma, she is our velcro…she fastens us firmly. Thank you for loving her.

  459. Anonymous says:

    THANK-YOU Poppa, that you are able to turn the page. You had me worried with some of your earlier comments when your claws came out and you loved theS___ word and your colors came true, not as shiny!. You were feeding into comments. People have respected and hung onto every word you have said. So please continue to be the positive force in Kelles world, This blog should not be used as a way to vent, throwing around the he said, she said. And EVERYONE has a right to their OWN opinion, especially when you are putting yourself out there, for which not all may or may not agree! It was like a school playground. She likes me better than you!! And makes you wonder if this blog is so popular because of portraying a fairybook story. What if a writer wasn’t as pretty or couldn’t afford some of the luxeries that you have talked about. Would there be as many followers. I think not!
    So life will go on. Kelle will write her book. I just hope and pray everyone will live happily ever after.

  460. Anonymous says:

    THANK-YOU Poppa, that you are able to turn the page. You had me worried with some of your earlier comments when your claws came out and you loved theS___ word and your colors came true, not as shiny!. You were feeding into comments. People have respected and hung onto every word you have said. So please continue to be the positive force in Kelles world, This blog should not be used as a way to vent, throwing around the he said, she said. And EVERYONE has a right to their OWN opinion, especially when you are putting yourself out there, for which not all may or may not agree! It was like a school playground. She likes me better than you!! And makes you wonder if this blog is so popular because of portraying a fairybook story. What if a writer wasn’t as pretty or couldn’t afford some of the luxeries that you have talked about. Would there be as many followers. I think not!
    So life will go on. Kelle will write her book. I just hope and pray everyone will live happily ever after.

  461. Anonymous says:

    THANK-YOU Poppa, that you are able to turn the page. You had me worried with some of your earlier comments when your claws came out and you loved theS___ word and your colors came true, not as shiny!. You were feeding into comments. People have respected and hung onto every word you have said. So please continue to be the positive force in Kelles world, This blog should not be used as a way to vent, throwing around the he said, she said. And EVERYONE has a right to their OWN opinion, especially when you are putting yourself out there, for which not all may or may not agree! It was like a school playground. She likes me better than you!! And makes you wonder if this blog is so popular because of portraying a fairybook story. What if a writer wasn’t as pretty or couldn’t afford some of the luxeries that you have talked about. Would there be as many followers. I think not!
    So life will go on. Kelle will write her book. I just hope and pray everyone will live happily ever after.

  462. Poppa, it is so true what you said about people who do not have experience with ds reading and learning from this blog. I’d never really thought of that- but after I read your comment, I tried to think of how much exposure to ds I’ve had in my life. Everything I could recall stemmed from my teaching experience. We watched Educating Peter in my exceptional child class. Then when I was a teacher, there were two boys… two of the sweetest first grade boys who had ds… they would often come have lunch with me and my teammates- their teacher asked if it could be a “reward” for them and we said of course. We just adored them and looked so forward to the days they’d sit with us in the teacher lounge. Though my experience was small, if I wouldn’t have been a teacher I think I literally would have had zero experience with ds in my twenty nine years of life. So while I read this blog not even thinking of ds, I relate to it being about a mom with two girls just like me, it is very true that I and many others will learn a lot from all I read as I follow you guys on this journey.
    Hugs!!!

  463. Can’t wait to hear about your time in Key West. I have family who lives there and I have spent many vacations away from Michigan visiting that beautiful island. We stayed at the Travelers Palm while there last time and LOVED it. Can’t wait to go back!!!

  464. Anonymous says:

    I can’t remember my google account info, but my name is Mindy and I live in VA Beach…
    Great post! I love the part about accepting what life gives us. It’s true that happiness is a choice.
    The 2 boys thing can be a touchy subject. The ONLY time I get sad about it is when someone says “Oh, I bet you wanted a girl” or “Are you going to try again for a girl?” As if my life is somehow less meaningful or fulfilling. Just like moms whose babies have DS don’t want us to feel sorry for them, I don’t want to be pitied because I can’t shop for girl clothes.
    This little rant isn’t directed at Kelle. I get what she’s saying and think it’s a wonderful sentiment about acceptance. Just wanted to give my thoughts on the matter :)

  465. There are no claws here…just arms to hug. I laugh that you thought so…it must be like the thunderous voice of the wizard of Oz behind the curtain…the voice parents use with the bullies in the neighborhood…ha! It was a comment to me from one of the hundreds of friends I have encouraged to follow this blog. Friends who know nothing about Down syndrome…they know no one with it or with somone living with it. They have been telling me how they feel different now about “these children they have seen in restaurants and pass with their families at the mall.” They are gradually, gently being enlightened. They love our Nella. They have opened their embrace to her and others like her. They stand with us as we look down a path and will walk with us…and sometimes skip with us…and sometimes stand strong so we can lean on them. It was one of these wonderful people who follows the blog and also enjoyed the comments as they heard from others and met other little “Nellas” through the comments. She heard something different in these comments and I could tell, it seemed like she might let our angels slip back into “these children I see in restaurants and pass with their families at the mall.” I want more of our Nella…and I want more for my friends. So…no claws here…just hands holding small things and finding them beautiful.

  466. Anonymous says:

    Hey, noticed that you have a new tab on “Special Needs” and thought what you had to say was great.

    I am one of your readers that came here with the Nella birth story and I don’t have children with Down syndrome. But through this blog, I know that I have more appreciation for the people with Down syndrome, and those who love them. For me, you strike a great balance where Down syndrome is in the mix, but not the main event.

    I think you are a great mother and am inspired daily by everything you do, so keep rockin’ Kelle!

    Marianne H. in Kansas City, first time commenter (I emailed you last week about the swim floaties, if you remember, thanks, I did find them on Amazon!)

  467. Poppa knows best:
    “Some have been pretty tough on a tiny little selection of commenters…but they, I believe, meant no injury…they are simply at a different place…and things look different from “there.” We are here…and happy here.”

    There are people in all stages of life. That is what is so wonderful about this blog is it shows how to find happiness whether you are here or there. Learning to LOVE and appreciate the small things! The cup can be half full all the time if you allow yourself to see the beauty in the tiny things even on the bad days. Don’t read between the lines or mix the words. In the end it’s not about disagreements, it’s about getting past the negative and getting back to happy.

    I now take my camera everywhere, blog more, love more, play in mud puddles with my littles, let my daughter wear her apron while making cupcakes and realize it really is OK if she makes a huge mess. Life is messy. It’s what makes it fun! A lot of great stuff gets forgotten in my life as I let the ‘busy’ take over. By Kelle letting us glimpse into her life it helps me to remember to take the time to appreciate little things and not take them for granted.

    I hope everyone on here, whether you are in a bad place, have a differing opinion, are just starting to enjoy the little things like me, or those who have already found their rose colored glasses can all look to this blog and be reminded to find happiness in SOMETHING every single day.

    Thank you Kelle for your beautiful blog and sharing your beautiful (imperfections and all) life.

  468. You are a mother and woman above all, so it is no surprise that you feel this way some days. My daughter has CP, develpmental delays and scars from being burned by her birthmother….I too have my days. These children are so beautifully unique, I wouldn’t change a thing other than for it to make life easier for her:(
    Great post, you are a supurb writer and I enjoy reading your posts.

  469. I love how you are learning and growing and loving thru this process. You always make me think and be thankful : )
    Thank you. Hope your vacation is sensational!

  470. love that perspective. so true!

  471. One handed typing wgile my girl nurses, but I wanted to offer some reassurance, small as it might be–my little one is about a month and a half younger than your Nella and her hand and arm movements are also incredibly choppy. Like I was telling my husband last night, she was getting very offended by a rattle that kept punching her in the chin and trying to wedge itself up her nose. 😉

  472. Anonymous–Rosemary–make no mistake. I focus on all the things my son can do. Doesn’t change the fact that because of Down syndrome, my son will miss out on some things. That’s just a fact. That’s reality. I deal with it. I accept it. Doesn’t mean it doesn’t make me sad some days. Some days it is easier than others. I can and do see the glass full, but let us not forget that even though we may not choose to focus on it, the glass is still half empty, and at times, that emptiness hits you, and it is ok when it does. I try to embrace the whole glass! And, don’t take that to mean that i think Kelle doesn’t do the same!

  473. that was a great post. good, good read, my friend.

  474. that was a great post. good, good read, my friend.

  475. heh. I have been criticized roundly in the past for being “too Pollyana” about my life with my daughter, who also has DS. she is 12 now, and guess what? I still think DS is a beautiful thing. She still has friends, and playdates, and a social life. She is still cute, and funny, and charming. And yep, she still has DS. I was told once that I wouldnt think DS was so great when she was older and lonely and shunned…lol. Sure, she gets lonely sometimes, but so do I.
    You know, Kelle, I was born to a 16 yr old mother, my father was in prison and would be most of my life. He would get out, beat her up, abuse us, do something stupid, and go back to jail. I was adopted at 6, then abused by that stepdad to some extent. I survived some pretty signifigant emotional abuse, and I kept standing back up and dusting myself off. I got pregnant at 19, unmarried and dirt poor. Had another child 7 yrs later, then took in a nephew that was murdered 3 yrs after that. somewhere in the mix, I had my little one with DS. Im still standing, and life is beautiful. because i CHOOSE to see it as beautiful. I could bitch and moan and whine and cry why me. I could wish I had another life, a better life, that I didnt live in a mobile home and drive a car that is getting ready to die any day. I could wish for fewer bills and the ability to just not worry about money. I could wish for my daughter to not have DS. and my son to not have an attitude…and my 21 yr old not to too, lol. But this is MY life. I love that it isnt perfect, that it is a challenge, that I still get to see beautiful sunrises and laugh and experience the kindness of strangers. DS has made me a better person. I am going to enjoy my life, and PTTH to the idiots who would judge me for it, or who would have the absolute audacity to tell me that it is “obvious” that I am masking my “pain”. Life is what you get, and Im gonna suck all the joy I can from it and recognize the good for what it is. One of the good things is you, kelle. Screw em if they cant find their own happiness 😉

  476. Wonderful post. So vulnerable, so real, so true. Being a mom is by far the hardest and most rewarding job there is. Everyday we worry whether we are doing the right things for our children. And while there are days you may worry about something specific to DS, there are those days you worry about things completely not related to that, because that’s what we moms do – is worry about the well being of children. That’s par for the course. Yesterday was a horrible day for us, Lucas just wouldn’t stop screaming from pain the docs simply pass off as colic – I actually told God “I hate you right now”, immediately apologizing because I really don’t, but I was that frustrated and upset. There is nothing worse than seeing your baby in pain! Ok, so I’m rambling. Love your post as always. Here’s one of my most recent posts:
    http://itrocks2bmom.blogspot.com/2010/07/i-woulda-breastfed-if-i-could-so-get.html

  477. I’ve enjoyed reading your blog posts about little Nella. I first found your blog through your sweet baby’s birth story and your first introduction to Down Syndrome.

    And you made me really start thinking… I’ve often thought what my response to a downs baby would be if I were to ever have one. I can’t imagine the responsibility that a parent of a downs must feel that moment they find out. And the tears that are sure to come. Your story helped me think about it in a more practical sense.

    But I really think that deep down inside, I would feel a special link to heaven if I were to ever have a downs baby. Because after growing up and living with my Downs brother, Zack, I truly believe that he has a connection to the eternal, to God, to That Place that none of us “normal” people have. Whether we admit it or not, we talk about heaven as the place you can go as long as you’ve been good enough to go there. But Zack doesn’t think of it in the realm of good people vrs. bad people; he sees it as The Place that’s more real than this place here. The Place where those he loves actually LIVE. Earth is a box of endless limitations to Zack. But Heaven is real life. Because people with downs are not crippled by earthly weights. For us to visualize heaven, we have to take our eyes off of the temporal and make a distinct effort to imagine a God so holy, loving and pure that has prepared a place for us to live. To Zack, he’s already in that frame of mind. For him to think of this life and how to cope in a world so full of hurt, strife and competition takes the same amount of effort as it does for us to try and grasp That Life we all long for in the sky.

    I treasure every memory I have of growing up with my brother and enjoy watching him turn into a man now. His dreams and aspirations that he’ll never see fulfilled (wife, kids, driving, etc) do not deter his desire for a full and happy life. He’s always hopeful and simply DREAMING about his future brings him fulfillment and happiness. He’s so thoughtful and kind and even calls me on my birthday to sing an off-key “Happy Birthday to you” song. :)

    I love the way you express your thoughts and experiences in going through this special journey. You have a sweet treasure in your possession. And it will only get sweeter as the years go by.

    I know: because I lived with Zack. <3

  478. I wanted to thank you, like so many others have, for sharing your story, your family’s story. We too had a daughter with down syndrome, born very close to Nella’s birthday. She was our first child and it was a surprise when she was born and we had the most difficult time accepting it and moving forward with life. I found your blog and it was as if someone shook me and said “what’s the matter with you, she is a gift!” You and your little girl were an inspiration to us. You showed us how wonderful life can be, even with a few bumps in the road. Our gift was taken from us only 2 short months ago. Unlike Nella she was born with many health complications because of the down syndrome, one of them being a severe heart condition. She passed away at home as we sat there helpless which is perhaps the most difficult part of it all. I read your blog religiously, watching as Nella grows and blossoms. She is a beautiful little girl. I read your stories and think about all the things we’ll miss doing with our Anne. But I want to thank you for sharing them with all of us. I hope that you will continue sharing for a very long time. Nella is such a lucky little girl to have such a loving family. Thank you.

  479. wedge, just wanted you to know your story touched me. Such a loss…unimagineable. My best to you and yours.

  480. Kelly at kellywhite@rogers.com says:

    Wedge – same here. Just read your comment and I am so sorry. Thinking about you even though I don’t know you. xoxoxoxo

  481. you deserve this more than anyone:
    I am passing on The Sunshine Award to you! Thats right, you’re awesome. “The Sunshine Award is awarded to bloggers whose positivity and creativity inspire others in the blogging world.” http://welcometocaliland.blogspot.com/2010/07/im-like-ray-of-freakin-sunshine.html

  482. OK…Kelle so you’re like a friend in my head. I’ve been secretly following your blog, admire how you love on those babies and capture the moments with your incredible photography. This post was so candid and so real. I feel your pain for the things we can not change. It took me a long time to learn there is more change in acceptance. Still we reflect, we feel sad and then we just gotta get up and dance through the rain.
    Nella picked you for a reason…you inspire.

  483. just wanted to say thanks for this amazing post. Just discovered your blog – what a gorgeous family you are! I have an 8 year old girl with autism and she has just been diagnosed with coeliac disease too – some days are hard but then something happens to lift you and on you go again. Wouldn’t be without my 2 gorgeous girls. Love your pics – amazing

  484. I oh so understand this post!

  485. I oh so understand this post!

  486. Anonymous says:

    I was linked to your blog by a post in DesignMom. I was soo touched reading about the arrival of Nella and your response. You have a special spirit about you and I think it’s special how much you obviously cherish your role as a mother.

    I just wanted to share something with you. The church of which I am a member believes that your special Nella is exactly that, so precious. The core of our religion is families and their eternal nature. If you have any curiosities I encourage you to go mormon.org.

    Thank you for sharing your special isights into life.

  487. You have a wonderful and amazing way of putting things in such clear perspective.

    I really enjoy reading about your adventures and how you approach your life.

    You are such an inspiring breath of fresh air.

    Thank you!

    :)

  488. Jen, P.T. from TX says:

    This is her blog. She can write whatever she wants. If you don’t like it, go write your own. I don’t have to agree with everything she writes here, but it is her blog and she has every right to say what she wants.
    Oh and thanks for the shout out to the Physical Therapists, Kelle :)

  489. I thought you looked framiliar! Usually it’s the kids that tip me off, but this time it was you. And when you were holding your youngest daughter, I really remembered :)
    I followed your blog for a while when you gave birth to Nella. I cried reading your post, and I just cried again. You are such a wonderful, amazing person. Your girls are so lucky to have a mommy like you!

  490. Thanks so much for sharing your story. I too have a daughter with Down syndrome–she is now 9 months old–and you are so right about the rollercoaster of emotions that you feel. Some days you can almost totally forget about the Down syndrome, or be totally comfortable with it as the new “normal” in your life. And other days, the reality of it hits you like the bus. Hang in there and keep sharing your amazing story.
    PS-Can I post a link to your blog on mine? http://www.awellbalancedmom.blogspot.com

  491. I think I’ll save this post to come back to on the days and moments my breath escapes me as I “see” the DS everywhere- because your words are the cheerleaders to my journey.

  492. So late to the party on this one, but…thank you. I never dreamed I would write a blog post titled “More than you ever wanted to know about ALS”, but I have. It’s my bus. Thanks for speaking my heart in this post and helping me remember that normal looks different at first…then it’s normal again. To NOT know about ALS would mean to NOT have known these brilliant years with my amazing husband, so I will take this new normal and love our life. So many blessings to you and your beauties.

  493. Hi, I’ve just found your blog…so beautiful.
    Best regards from Buenos Aires, Argentina, Maricel

  494. This comment has been removed by the author.

  495. Thank You. I too, had a second daughter less than 2 months ago, 7 years after my first. And she too, has an extra chromosome. Many different people have directed me to your blog, and I must say, I am grateful for your words. Maite (pronounce my-tay) is healthy! And as far as I can see, Nella is too! I would love to have them meet one of these days! Perhaps, we’ll see you at next years NDSS luncheon, as my mother in law in is NYC, so if it’s there, so will we be. Keep it up, you inspire….

  496. I love to read and look at your beautiful photos, not because I have a child with any needs at all, mine are now well grown. I love to read your blog because I think you have a wonderful way with words and a great attitude to life in general.
    When I am feeling ‘down’ I come here and look around at all your links and go away feeling at one with my world again :) Thank you !

  497. I have to post on this.. what a WONDERFUL post! I’m 3 months pregnant and realizing that I desperately want a girl (this is only the first of the hopeful two babies we will have) and I fear that they will both be boys. Ironic as thats what I always thought I’d have – I now long for a girl. And you know what? Just like an extra chromosome – if my babies are boys and not girls – I’ll love them – I’ll treasure them – and I won’t care in the end. Your blog has been a GIFT to me and I will reward myself with your book – but for now – I’m finding joy in simply learning from your journey. Thank you, thank you – such beautiful words you have.. (and pictures!!)

  498. I read about this post in your book, I remember reading it when you first posted and I always thought you were comparing DS with having boys but now after re-reaing I realize you are just compating the disappointment and that it is minor…I know I always wanted a girl…I am expecting now so we will see if we get lucky but having a boy would be good too just not what I really want.

Leave a Comment

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>