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Speaking in Tongues: An Almost Fifth Year Birthday

Nella led me to bed last night, never one to fight a decent bedtime and always eager to savor her head-to-pillow routine which, with her, almost always goes down exactly like every dream I ever had of putting kids to sleep before I became a mom—hair strokes, starry-eyed gazes, cheeks between hands and I love yous in six different languages. One of these languages is English. The others? I don’t really know, but we both understand them. My past religious submersion threw around a gift referred to as the Language of Tongues—a mystical spiritual language inspired by God. The thought of it has always set off a skeptical fit of laughter in me, but perhaps if a mother had written one of those books of the Bible and described the lock-eyed gaze she shared while nursing her baby or the sweet words she whispered against her sick child’s brow as she rocked and kissed him to sleep, there’d be “The Gift of Tongues” notations clearly linked to those scriptures. “A mystical spiritual language inspired by God” sure describes a lot of heartfelt whispers I’ve made as a mother, so I’m just going to clear up that definition for myself right here, right now. The Bible just gained two points in my book.

So last night, Nella snuggled as close to me as she could, her body molding to mine just as easy as it did in the hospital that first night, except surrounding more of me, literally…figuratively. She looked at me and smiled her magic smile that pulls my thoughts away from that thing I have to finish after I put her to sleep—that smile that summons all the clarity in the world into that one moment, that smile that is the first letter of the alphabet in the Spiritual Language of Tongues.

“Mama,” she says. “Mama, Kelle, Kelle,” she repeats. And smiles. And kisses me—three times. And holds my cheeks in her hands. And then holds her hand zombie-like in front of us. “Tickle,” she says.

I tickle her hand while I quietly sing—first Dash’s song per her request, then her own, then Lainey’s. She never asks for her own song first—always “Dash-el Omar” first.

She fell asleep quickly and I slipped out of bed and back into my evening routine.

“She out?” Brett asked when I returned to the kitchen.

“Like a light.”

Our bedtime routine is one of our constants with Nella, a calming ritual that began on January 22, 2010 and has since brought us nearly 1,825 nights of clarity. It’s the stuff motherhood is made of, these routines, but also the balm that soothes the hardships of a diagnosis. When I think about Nella struggling to learn something in a classroom full of typical kids, or Nella graduating high school and craving the independence her siblings have, or Nella seeking fulfilling employment, I quickly hop right back to where it doesn’t hurt. It doesn’t hurt at night in bed when she’s smiling and surrounded by the comforts of what she knows, where she’s just the same as everyone else.

But sometimes it does.

I had an anxiety attack in the middle of the night the other night. It was about Nella, and I knew where it originated. On our trip last week, Brett took Lainey and Nella out to the beach to play one afternoon while I tried to put Dash down for a nap. After thirty minutes or so, they returned, the girls running off to find snacks but Brett quiet and a little off. I always know when something’s up with him, he’s good like that.

“What? What happened?” I asked.

His eyes were watery. “I saw it,” he said.

“Saw what?”

“She knows, babe,” he said.

Before he went on, I already knew what that meant. Because I know him. I know us. I know what we both worry about, amid our acceptance and our day-to-day “we’ve got this.” I know what twists our hearts the most.

“She knows she’s different. I saw them playing, I saw her watching Lainey, and—I don’t know. It was the way she looked at her, the way she tried to do what she did, the way she couldn’t. There was this look. It just killed me. I know what I saw—she knows she’s different.”

It hurt hard for one second, but my instincts were triggered. I know what chute to deploy for this one. I’ve done it for myself many times.

“Stop, that’s our feelings, not hers. That’s your sadness, babe. She’s almost five, she’s happy! We can’t project those feelings on her or she’ll pick them up. We can’t do it this way. We’re all different, that’s life. We can’t bring sad feel-sorry-for-her feelings into this. We can’t parent that way.”

I wish I would have acknowledged his feelings more at that moment now that I look back. I have since, but if I were to do it over again, maybe I would have hugged him or said “I feel that way too, babe. I understand, but…” It’s just that I have this job, and I take it so seriously that sometimes I forget we’re in this together. My matriarchal commitment to paving the road for our children’s future, specifically for the way Nella sees herself, has created such a gung-ho obligation to “We treat and see you no differently than anyone else,” that perhaps I don’t make room as much as I should for moments of “This is hard, this is different.”

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One of our best friends has a brother with special needs and consequently (or maybe unrelated) has had a special connection with Nella since she was born. We’ve had some passionate discussions about ways to raise a child with special needs, sometimes through tears, and if there’s one thing for certain, our friend staunchly adheres to the philosophy of high standards/treat no different/don’t you dare feel sorry for her. I envy his commitment to this philosophy, a commitment that allows little room for sentimentality or tears and, in our friend’s case, has helped his brother achieve a pretty normal life. “My mom never treated him any different. She had six kids to take care of, she couldn’t.” I know where to turn to for military strength and a perspective away from sympathetic stereotypes of special needs, and any time I’ve ever voiced a hint of “Poor Nella,” our friend drill-sergeants me back into The Matriarch Pillar of Strength—“STOP. You think about her that way, and she’ll feel it. She’s NO DIFFERENT. You hear me?” One night, we were all at dinner together, fell into a discussion about this again, and I saw something through his militant devotion to his philosophy. I saw his tears.

It’s there. No matter how much we dedicate ourselves to things we believe in, no matter how faithfully we practice our “See no different, treat no different” special needs strategies, you cannot deny how true and real the hurt is of knowing that someone you love so desperately has to experience a life that has so many struggles. And that’s how I felt when I woke up in the middle of the night this week, remembering what Brett said he saw on the beach and further imagining our daughter in a second grade classroom, in a high school cafeteria or out in the work world and struggling to accept that she’s different or wondering why or ever feeling like she doesn’t belong. Dear God, the sadness of these middle-of-night thoughts is suffocating but thankfully—much like thoughts of paying bills or returning e-mails or traveling on a plane—fifty billion times worse and more paralyzing in the thick of darkness than it is in the morning. I can bring a clearer perspective and I can deflate every fear, every worry and every disadvantage with a contrary thought—“It could be worse” or “every child, regardless of disability, has these feelings” or “Life is hard, get over it.” These have all worked for me and will continue to work for me in the future. But this is to say, “Hi Pain. I see you.” Everyone needs some goddamn recognition from time to time, and pain’s no different.

Speaking of recognition, I returned to Brett to validate his very real feelings after my middle-of-the-night low. “I thought about what you saw on the beach the other day. I know those are real feelings, and I worry about them too. In fact I woke up in the middle of the night last night with a straight-up anxiety attack about it,” I added.

“You did? I did too.”

In the daylight, in the hope of promise and potential, we talk about Nella and continue to make plans for her future just as we have done and just as we do for the rest of our family. We see and treat her no differently than any one of us and yet we can’t deny that she has different needs, so we do our very best to support those. Right now that means working closely with her preschool team, getting ready for another IEP meeting to keep communication open with the school district she’ll eventually be a part of, and day-to-day speech and O.T. (occupational therapy) strategies. We’ve gone back and forth between weekly/bi-monthly therapy and consult basis for speech and O.T. ideas we can practice with her at home. I hesitate to give any advice on these issues because we are constantly figuring things out for ourselves, and every child is different. In our case, when it comes to therapy, success boiled down to finding really good therapists and supporting Nella with everyday support at home. That said, our most amazing O.T. and speech therapists have both moved on to different career paths, we tried an off-site speech clinic and didn’t find it helpful, and we’re now baking brownies to brownnose a highly-recommended in-home speech therapist into opening a spot on her already full case load for Nella. ;o)

My only tried and true suggestion would be to connect and make friends with some other parents further along the road. I have 3-4 moms who I turn to for all D.S. related questions, I download the apps they say are great, I make the flashcards they tell me to make and most important, with their support, I feel connected, strong and capable as Nella’s mom.

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Emotional procrastination was my savior the year Nella was born. “You don’t have to think about ten years ahead right now—just love her today.” I still tell myself that and yet things are different now. You eventually have to think about things because your child’s future depends on it. (And, if you’re brand new to this, don’t worry—you’ll be ready sooner than you think.) Some of the things I kept myself from thinking about are happening right now. That’s life though. It gets harder. But see that growing curve that measures challenges on life’s graph? There’s another curve on the graph, sometimes barely recognizable because it follows the exact same arc as the challenges. It’s life’s richness curve (“Oh my God! A double rainbow!). Every day as parents makes us ready for the next day. We follow the curve, knowing it transcends yesterday’s path. We wake up every day and work hard, researching ways to do things, talking to friends, making mistakes, fixing mistakes, thinking about the future, thinking about nothing more than right this second, making plans for everything—school, teachers, dinner, playdates, college, day trips, books to read, therapies to try, birthday parties, doctor appointments and bedtime routines where, at the end of the day, our babies we love so very much hold our cheeks in their hands and say, “Mama, mama, mama.” And we hear it in six different languages.

I can’t make everything better for Nella, I can’t magically change the way her brain works or fix her muscle tone or promise that she won’t have moments of feeling different from others in life. But I can do my part in making the world a kinder place for her to thrive—for all my kids to thrive. “It’s like this,” I told my friend Annie the other day, “With all the world’s sorrow and problems and heartache and hatred, it can feel so overwhelming sometimes to think that we can do anything to fix it. But if someone came and told me there was one thing I could do that was guaranteed to fix it—no matter how small that fix was and no matter how silly the task assigned was, I’d do it. If someone handed me a wrench and promised me that if I turned that wrench to the right every day, it would help make Nella feel more accepted and capable and valued, I’d turn that damn wrench right, every moment of every day until I died.”

Later before bed that night I found this text from her: “I just want you to know this: one wrench I will turn every day for eternity is to practice kindness to every human like Nella. And I will turn that wrench into my kids so that somehow, someway, that goodness flows all the way down south to Florida right into Nella’s lap. Because I believe that’s how the universe works.”

And if we all took that wrench and turned it to the right, imagine how far our wheel could travel. New destinations, a world of possibility. Or maybe I’m just speaking in tongues.

In two weeks, Nella turns five. That means, for five years, you—this wonderful, supportive online community—have shared our journey. Many of you gave meaningful words of encouragement in those very first months—words we needed and breathed in and so appreciated during a challenging time. And since, you’ve shared your support in many other ways—one incredibly notable, investing in our shared mission by donating to the National Down Syndrome Society. Thank you for helping us raise over $267,000 since Nella’s first birthday to support the efforts of the NDSS—advocating for the value, acceptance and inclusion of people with Down syndrome. We are thankful for a national organization that represents us and wish every syndrome, every chromosomal deletion, addition or abnormality had such a force. Thank you so much for your kindness in contributing to this mission over the years, a mission that’s important to many moms and dads and sisters and brothers, just like you. We still and always will donate to the NDSS and support their mission, and we hope you will too. As Nella gets older, we will continue to share ways that you can help support individuals with Down syndrome and community-recognized events such as March 21 (Down Syndrome Awareness Day) and October celebrations (Down Syndrome Acceptance Month). We’d also like to learn more about other organizations helping make life better for individuals with Down syndrome, specifically in relation to post-secondary education opportunities, scholarships and employment programs for adults. Please share in the comments or e-mail us at kellehamptonblog@comcast.net if you know of any that are doing important work and need a greater platform.

I did just write about new years, new goals and forward energy though, and Nella’s birthday is a perfectly good time for renewed action. What can you do now to share and celebrate with us?

Continue to choose kindness. Turn the wrench right with us. This world needs more love right now, and paying it forward, looking out for someone else, doing the right thing never goes out of style. When I wake up in bed at night and think about that second grade classroom, that high school cafeteria, that work place lunchroom, I’d love to know that it will be filled with kindness and acceptance—kids who will sit with her and ask her about that dance she went to—the one they know about because they sat with her the day before and heard about it. Students who will lean over and help her find that page, friends who will come over and hang out, teams that will cheer for her when she runs, employees who will take the extra time in training, graduating classmates who will clap and holler her name when she crosses the stage and takes her diploma. We create this kind, celebrative, supportive community for our children with every opportunity we are given to be the change.

I picked up Nella from preschool yesterday and was surprised that she didn’t immediately appear holding a teacher’s hand like she always does when they call her name. I waited a minute and her teacher finally laughed and yelled to me, “Hang on–she’s socializing with her friends.” I love that. I wouldn’t mind a good thousand more times in life of being told to wait a minute because Nella’s busy socializing with her friends or creating something or helping someone or off doing her own important thing.

In the meantime, we will cherish our bedtime routine–our hair strokes, our starry-eyed gazes and all the love between the sweet hands that squeeze my cheeks. We will equip each other with what we need for tomorrow…I love you, I love you, I love you. 

Nella wants (with helpful suggestions from her sister) a rainbow birthday party. And we think that’s a pretty perfect way to celebrate these five incredible years.

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  1. beautiful. and yes, i, too, have those places where I retreat to where it doesn’t hurt and feels safe.

  2. Beautiful, Kelle. Thank you from a mama that feels those same feelings but couldn’t as beautifully put them into words.

  3. Your words always speak volumes to me. I love your family and Nella from afar (michigan, actually!) and think of her often.

  4. Ahhh you’re making my cry at work again! There are definitely people in this world that will keep turning that wrench. My brother’s peers in high school proved that when they voted him homecoming king, gave him the loudest and longest cheer of the day at graduation, and still continue to include him in the front row of their student second at all the sporting events. He know he’s different… if different means the most popular kid in school :)

  5. First of all – Im sending you love. You are an amazing mom. I understand everything you are saying, from that true place of understanding because you are living the same thing! I felt every word of it ring in my heart.

    One of my good friends has a daughter with D.S. – she is now in the 7th grade (middle schooler!). Our town is quite amazing – there was just a newspaper article about Claire (my friend’s daughter) and how her typical peers and her legit FRIENDS (not through pity or parental coercion, but bc they love her) made her their field hockey team Manager. These are girls who are at the “mean girl” age, but they are not. They have known Claire for years and years, get their nails done with her, invite her to parties, and made her manager of their field hockey team (something Claire takes VERY seriously.). Does Claire know she is different? I don’t know. The more important question is this – “Is she happy? Is her life full of love and family and friends – REAL friends?” Yes. Her mother is amazing – never let the D.S. define her daughter or limit her daughter. Her philosophy is “Nothing ventured, nothing gained.” She reminds me a lot of you. It’s gonna be okay. This, I know :)

  6. Beautiful words. Thanks for sharing your heart.

  7. Wow. My cheeks are drenched in tears and my heart is full of love and hope and inspiration. What a beautiful post.

  8. We’re turning the wrench with you — powerfully, constantly. Love to you all. Happy early birthday, sweet Nella!

  9. Kelle, I would love it if you took a look at this website, which supports individuals with developmental and other disabilities in my community in upstate NY. Liberty ARC: http://libertyarc.org

    A beautiful thing has happened in our town. Liberty ARC opened a food market called Liberty Fesh Market. It employs disabled individuals, and better yet, it is non-profit. So when I go there to buy my farm fresh milk and other delightful local goodies, my money is not going to a ruthless corporation. It is going to the disabled individuals in my community!

    Your post today was beautiful and moving! Although I don’t “know” you, I thank you for being in my life and in the world! ��

  10. Thank you for sharing. Your daughter Nella is beautiful.

  11. Beautiful! Your words continue to inspire me!

  12. Takes my breath away. Thank you.

  13. You’re making a difference. With every post.

  14. I have a son with moderate/severe autism. At some point, they feel different. Sometimes it’s because they go to a different school than the other kids. Sometimes it’s because the other kids have playdates and he technically wants one, but can’t have one. Sometimes it’s because he needs so much more instruction/criticism than everyone else.

    Those are the sad moments. But then there’s so much they have that the other kids don’t. A ton more attention, that’s for sure. Different kinds of “friends” (therapists), activities we get to go to because of local charities that make parties for kids like him, being first on line at Disneyland.

    And if you really think about it, every child is so different, and needs individualized attention. One kid is naturally athletic, the other isn’t. One can easily do math problems, the other struggles. Each of us have our own path in life, the best thing we can do is acknowledge that our children ARE different, but so is everyone else’s.

  15. From a new mama of a 4 month old little stud muffin with DS, THANK YOU for this post. It made me cry into my lunch but I could not have said it better myself. I too would spend my life turning the wrench for him. And I too look forward to the daily moments with him that make all the other scary ones go away. XO, Kate

  16. Beautiful Kelle! And oh-so-timely. I woke in the middle of the night after having one of those dreams…. the one where the “other” Quinn is talking to me… the version of him that doesn’t have Down syndrome and can communicate all that he feels in a way I can understand. I haven’t had one in a long time. They used to leave me feeling as if my subconscious was somehow betraying my “real” Quinn… sounds silly in the daylight, but makes perfect sense in the dark sleepy hours. We are a few years ahead of you on this path… those moments come farther & farther apart. What fills up the days instead is all of the regular old kid stuff… homework, cub scouts, baseball sign-ups. One thing I have learned is that different is just different… not better or worse… it just is. So glad you are on this path too and lighting the way with your beautiful words. Big hugs to you Mama!
    xo
    Kate (KWQR)

  17. It’s so much easier to type than to talk because my throat is very tight right now. Although I’m not a huge Dr. Phil fan, I think his “soft place to fall” saying rings loud and clear right now. That’s what every parent should give their child, but parents of children who are a little different really need this support.

    I worked in an administrative way with families who had children in special education and this is my theory about therapy, especially after the first year or two. Therapy is like piano lessons. You need the direct instruction and then you need to practice, practice. I think direct instruct for most kids should be once a week and then everybody at school and home should find ways to practice.

    You’re doing a great job…with all 3 of your cherubs!

  18. Kelle,
    Great post!!! Thank you for always putting into words how I feel as a Mama with a child that has his own challenges. We just want our children to be accepted, to find their own courage, to live a life that gives them back what they give to us each day…true unconditional LOVE and acceptance. Your words, your own personal struggles and how you face them head on are inspiring.
    I turn that wrench to the right each and everyday! I am an early intervention Therapist and I am honoured to work with such amazing little people each day!! They teach me more than I could ever teach them!! And your friend is right. If we all taught our children to turn that wrench to the right-to practice kindness to every human like Nella, goodness will flow to all. From working with young children with a variety of disabilities, my own children have an unconditionally acceptance and love for them and others they meet along the way. One of my youngest son’s best buddies, that he invites over for playdates and to his hockey and baseball games has Autism…but my Zach never sees that…he just sees his friend. We also have family friends that have a son with DS that my boys adore!! Turn the wrench to the right people!!

    Thank you Kelle for your words, your gorgeous photos and for sharing with us what so many of us parents feel each and everyday. Keep doing what you do!!
    All the BEST to you and your family in 2015!!
    Monique

  19. You. Are. Awesome!

  20. Thank you, Kelle! We will continue to turn that wrench to generate more kindness and acceptance in this world. You are such an inspiration for those of us who are following the same path.

  21. What a wonderful post and What a great birthday idea! I hope you can use the recipe I sent you many years ago for Rainbow cake.

  22. I… I can’t…. Ugh. I have an 18month old little girl with Ds. From the moment we found out she might have Ds and I discovered you, you and your story/lives have been my safety raft. So thank you. A couple weeks ago, I took her to one of those indoor playgrounds. I saw it. What Brett saw. I saw that she is different and she felt it. Like yall, we live most days with our gung-ho attitudes and I am the maternal pilar fighting for it all. But that day, as she sat by herself playing with blocks as other kids ran, jumped, and climbed over the foam jungle gym, she watched. I knew she wanted so bad to join. I could see it. I watched her try to figure out how to get over to where they were with out success. And I watched her then turn and go back to her blocks by herself. And it hurt. I never want that for her again but I also know that will constantly be a struggle. Thank you so much for your beautiful words, your attitude, your sharing your family. Literally my life raft. <3

  23. Wow. All I can say is WOW. I cried, you have the same feelings I do and think about quite a bit. Well written.

  24. I grew up with a disabled brother who now lives in a group home. Your healthy “we got this” attitude will come in increments. If it takes a village to raise a child, parents of a special needs child need their own support and encouragement from the same village(it takes a village to raise and nurture a special needs child and his/her family). There will be obstacles, challenges, moments of resignation. But at th end of each trying time you will “get it.” And while working through a valley, break out the “Let it Go” and “Shake if Off” tracks! And there’s always the infectious “Happy.”

  25. A heart felt thank you to you.
    I came across your story last night & shared on facebook so I was pleased to see this writing today. I sense your experience with your magical Nella & it’s seems so expansive that it’s almost out of this world in the best way. My sweet Shaylan Spirit turned 18 on January 1st – can hardly believe it. I didn’t find out until he was three he had mosaic down syndrome as his was a home birth & I didn’t have any testing – not that that would have changed my decision. Shay was slower & there were signs. I also have a younger brother with spina bifida who I helped raise so I’ve had the privilege of special needs individuals close in my life. I believe everyone has some kind of special need – perhaps some more detectable. I had a dollar for off comments (“R” word slurs in media & elsewhere – even well intended friends) I’d have a hefty chunk & that’s hard to swallow. If I could have only spared (often intense, physical & emotional) pain for loved ones or myself, I would have used all my forces (as mama bears do) but I couldn’t, (I tried, in vain & plenty of tears). Yet, I am realizing now that I am not/wasn’t supposed to. I’ve heard it said that it’s the cracks that let the light in & the “cracks” have been pain for us. Those are the places that I’ve grown, where we have all become (hopefully) wiser & definitely more resilient as a result… it’s the crazy paradox. I remember my infant son once needed a painful procedure & I thought I couldn’t bear to be with him & the nurse gave me the option before hand. It was my brother who said, “You should be with him because you can never prevent him from experiencing pain, but what you can do is be there for him… that’s the part you have control over.” I never forgot that. Pain is often unavoidable but also such a potent teacher & a portal to channel energy – a lot of healing can happen when we open to pain.
    Overtime, I have striven to be patient with varying perspectives but still can’t fathom those hell bent on some sort of “perfection”. There is rejection happening towards beings who are destined for this world. It kind of freaks me out that people subscribe to some sort of status quo masquerading as “normal”. I’d like to know how that would make this a better world to live in? I’ve often felt that people with DS possess a more direct link with the divine; I’ve witnessed it in the trust, kindness, & clear seeing they often exhibit. On that note, if you’ve never read, “Expecting Adam” it’s a gem!!! My son has been an incredible teacher just by being who he is. He volunteers at a veterinary clinic (often requested because he’s so gentle with animals), he plays music, & so much more… Mostly, he loves. He loves you so deeply that it’s healing to be around him… he’s “special” alright. 😉 As a young adult, I see him grappling with independence (and we’re actually hoping he doesn’t move out for a while – perhaps selfish, but we want to offer him a cool trailer or flat on our property someday) & for now he’s still in high school as it’s taking him longer, & he doesn’t have a ton of friends (that one pulls at the heart strings) but he has some… & just about everyone has something nice to say about him. He loves to dance, wants a girlfriend, inhales vampire novels. He antagonizes his sister & vice versa. Amidst his pain and struggles, there is more happiness it seems… it outweighs the latter & I’m okay with that, it’s really okay… & even better than that a lot of the time. A profound thank you for sharing. Huge blessings to you & your beautiful family & precious Nella throughout your exquisite journey together… through all the ups and downs, it’s all necessary on some level… so much to learn, such big love!!! ♡

  26. You always make me cry. Not tear up – CRY. Your words are so powerful and beautifully placed together. You are doing an amazing job. And I LOVE your tounges comparison. A private, personal, special language that nobody understand except the Father (parent) – so amazing. You nailed it.

  27. My 17 year old son has gone to school with Jimmy, a wonderful boy with down syndrome since kindergarden. It probably wasn’t until about third grade, after hearing about his friend Jimmy for years, I finally met him for myself. Until that moment I had no idea he was any different than any of his other friends, because in the eyes of his buddies, he wasn’t. All the way through middle school Jimmy remained one of the guys. I’ll never forget standing on the sidewalk watching our towns parade when my son spoted Jimmy in his church float and called out his name. Jimmy was so excited to have his friend call to him that he practically jumped of the moving vehicle. They worked in school projects together and even gave advice in girls (Jimmy was quite the ladies man). The summer before freshman year in all of the new schools coming together excitement I thought of him. I expressed my concern to my son about kids that hadn’t grown up at their school and known him all of his school years maybe not being as accepting of Jimmy as we were used too. My son scoffed at the idea. Jimmy could handle his own and if anyone even dared he a group of brothers watching him always. Mommys mom chose a private school for him instead but I know that he would’ve been one of the guys even in that big huge pond of highschool. My son and his group of friends are our football team captains, homecoming kings, and all around pretty popular kids. Never once were they “to cool” for Jimmy. In fact, I’m sure there were many times Jimmy was embarrassed by their awkward teenage boy ways. Please know, there are kids out there who will be lucky enough to be Nellas friends.

  28. The 2-4am time period is the worst. If anybody came up with a tried-and-true way to never wake up during it, I would use that method in a heartbeat. Anxiety, panic, dread…everything is magnified way out of proportion, and telling yourself that things will look better in three hours really does nothing to help it. Isn’t it amazing how, waking up again just a few hours later, everything looks completely different? But at our most vulnerable times, I think the fear is there for all of us.

    Yep, life is hard no matter what burdens you’re carrying. My daughter doesn’t have DS, but I’ve got my own fears and anxiety for her, just like everyone else. It’s good to remind ourselves: Life is hard, it does suck, and it is unfair…some of the time. It’s the other times that I would like to spend most of my time dwelling in.

  29. I love your honesty in your posts. I don’t have a DS child but I have several in our community that we interact with often in the store i work in. We don’t treat them any differently and we tease them just like we tease everyone else. They in turn see us out and about in the community and feel comfortable to come and sit beside us at any community function. I still worry about my grown up kids. I just did it today and yesterday and the day before. I have a child with a learning disability and we always tell him that it enabled him to do the great things he is doing with his life…just takes him longer. I remind myself often to see the ability and not the disability. You have three beautiful kids and you will worry about each and every one of them. Then, when the crisis is over and you’ve all come through it, you’ll wonder why you worried so much. It has almost taken me a whole 50 years to trust God and let go. And I still fall into the pitfalls of worry. Man, I’m trying but I think it’s part of being human. you are human Kelle. You are humane.

  30. Every time you do one of these posts I both hate it and love it FIERCLY because much like you I try not to think about what the future holds for my 4 year old daughter with Down syndrome but those times when I let myself I am so unbelievably overwhelmed and sad and hurting for her I can’t even describe. So like you I just take one day at a time and recognize all of the things she has already accomplished, how unbelievably awesome she is and how much love she has for us and how that is, on most days, just exactly what I need! I LOVE to hear how you and others face the same struggles, the same feelings, the same singular goal to make the world a better place for them while at the same time not making them feel any different or less than anyone else. Thank you for being that voice for all of us! I, for one, cannot wait to support the NDSS through Nella’s fund for the third year in a row!!!

  31. Thank you. Beautifully written. I have a son with high-functioning autism and know just what you mean about those middle of the night moments. In the morning everything seems not quite so bad, but there are those dark days when your heart hurts because you just don’t KNOW, and it hurts to think of your child, or grown child, hurting. I think of Nella often. I think of her when the young man with DS bags my groceries nearly every week. Thanks to Nella, I see him differently. Or maybe, it’s that I try to really see him, and think about his story and his family. And I take this kind of pride that he’s there and working and getting along and seems happy. Thanks to this blog, I will always see DS differently…or maybe see more of the PERSON rather than a disability…

  32. Oh, Kelle, so awe-inspiring. I wish I could say that knowing Nella has changed my view of people with disabilities, but it hasn’t. You see, we were raised in a family that worked hard at celebrating everyone, disabled or not, different or not.
    My cousin has cerebral palsy, caused by an accident at birth. My family, like yours, treated him just as they did his four siblings, allowing a little something extra for him (things like therapies, tutoring, work programs) when need be. He’s an adult now, with a secure place in the world & in our family. He is different, but his difference makes him who he is & he is loved by everyone he encounters. I was raised by a Mom who lived kindness every day of her life & in turn, so do we. I pray that everyone with children takes from you just a little bit of the dedication you so lovingly provide when it comes to mothering your children & teaching kindness & acceptance, for it begins at home before it can spread out into the world. Much love to all of you, especially that precious, soon to be five(!!) year old!

  33. A beautiful post! My 32 year old sister-in-law is a Starbucks working, social, thoughtful, happy woman with DS. My oldest at age three started to realize that his Auntie was different as he asked if she, as a 30 year old, could stay home alone. As he’s gotten a bit older he has seen more about her that isn’t quite typical, but he also sees so much fun and joy and good in her. He loves to spend time with her and I have seen many amazing qualities spring out of him (empathy, helpfulness, gentleness) because of her. So I guess what I’m trying to say that is as the people around Nella also realize that she isn’t just like them, they will grow from that and it will indeed be a very beautiful thing.

  34. Wow! We have meet a few times, my daughter’s name is Cara and we live in Naples too.
    The bed time routine you describes is so similar to Cara’s I had to write to you. Like you in those beautiful moments before she falls asleep I find peace.
    Happy New Year!
    Gini

  35. You are an amazing person, mama and writer. I hope to some day have half the grace that you have raising your little ones. I am about to welcome my second little girl. And I swear when I read your posts, it makes me welcome all the unexpected surprises ahead- because like you said, one day at a time.

  36. This post is beautiful. Thank you for sharing it. All of this was just so good. Thank you for the part about recognizing pain- I have CP, and sometimes, when I was growing up, I felt like people worked so hard on the “look, you are no different, we love you the same, you can do anything” attitude that I could not admit to struggling with the reality that my disability does make me different, (and that different does not have to be a negative thing!) and there will always be challenges. I often felt like I had to have my brave, happy, overcoming face on 24/7, for them. When sometimes I needed them to sit with me and let me feel sad about not being able to keep up with my friends, and going for surgery, and then after we face the pain together, we could wipe our tears and go paint rainbows and chase butterflies with friends clinging to the back of my wheelchair, squealing like hooligans in the schoolyard. Thank you for acknowledging both sides!! And now-I am getting a degree in special education, and I work as a support worker for adults and children who have special needs. Different is beautiful and I wouldn’t wish to change anything about me or my friends. :)

  37. beautifully, gut-wrenchingly written. regardless of a child’s challenge, it still tears your heart out at times. it’s the only downside to parenting. loving them so much you hurt for them.

  38. One of my friends is a few years a head of you with his daughter who happens to have DS as well…She danced in the nutcracker and just had friends over for a makeover party. Yes, different, but also the same.

    http://plinth.org/wordpress/

  39. Kelle, you write so beautifully! You have been truly blessed with “having a way with words” that could come from the heart of all mothers everywhere. Thank you for sharing your thoughts and hopes and fears. You have a beautiful family and each of your children will do just fine in life!

  40. Kelle, you are awesome! Really. And so is Bret. You have a beautiful daughter in Nella, and I wish the very best for her and your family.

  41. Beautiful words, Kelle – you are a true storyteller. My throat aches reading this & holding back tears, but they are good tears – of understanding, not sympathy. Keep at it, mama <3

  42. Kelle, I have been following your blog for the last almost 5 years, 😉 but this is the first time I have commented. I have relished every post, and like many others, have shed many tears. Like you, I have a child, Caleb, with a chromosomal abnormality. In chromosome number 5, a ‘G’ became an ‘A’ and vise versa…. We believe that it has, indeed, made him quite magical. I am writing to you as one who is just down the road a bit from where you are, and also as a Special Education professional. (I am a Braille Specialist for a visually impaired 2nd grader)…. But mostly…. I am a Mama. Caleb is 11 years old, which, I have no idea how that happened, and completely freaks me out when I think about it…. He was JUST a tiny baby. He is an incredibly curious and delightful 5th grader, and has fully entered the “Tweens” stage. Which also freaks me out, but that is an entirely different topic. :) What I want to say is this… Thank you. Thank you for giving the Pain a voice. Thank you for the validation of the fact that, while our children are not at all different, they are, in fact, entirely different. And the way that they are able to fully exist in both of those truths is part of what makes them so magical, but it can also bring great pain. And worry. And fear. My husband is a pastor, so I shouldn’t go into the great detail of the rage that fills me whenever I have feared for Caleb….. But it is there…. Just as valid as the pain. They, fear and rage, do not rear their mighty heads often, but when do…. Mercy…. I would lose my religion if I thought it possible. 😉 so thank you. Thank you for your wisdom, and validation. The other thing I’d like to say, which I know you know already, but, if you’re anything like me, it’s helpful to hear good things, even if they’re things you already know….
    It’s only going to get better. The joy of discovering each of our children (I also have 8 year old twin boys, all of my boys were adopted when we lived in Hawaii, we’ve had all of them from moment first breath, and that is another incredible story for another time….) I digress….. What I have discovered with this Journey of Mothering is this: it just keeps getting better. That is NOT to say that there are no longer worries, or fears, or pain. That is all still there…. It just comes in slightly different packages. It gets better because you are watching these tiny humans, all different, all magical in their own right, becoming…. Themselves. It gets better because you grow into them, almost as much as they grow into them. It gets better because you grow more and more into you…. The woman God has designed you to be, the partner, the teacher, the snuggler, the warrior, the Mother….. You slowly grow more and more into all of what makes you, and all of what is needed to pour into them. Even on the days when you feel your cup is anything but “runneth over”. So thank you. For giving a voice to the pain, but most of all for championing not only your baby, but many of ours as well.

  43. I feel ya sister.
    And I hear you.

    5 years? It’s gonna be epic.

  44. Kelle, my Hope is 9 and notices the differences. But she isn’t sad (yet? not sure about that one). I struggle with the sadness/anxiety too, but she isn’t sad. In fact she is pretty happy. She tells me “Mom, I so love you”.

    Thank you for turning the wrench of kindness. It’s a visual that I can use/spread/think about.

    Happy birthday rainbow girl (and her mom too).

  45. Beautiful, friend. xo

  46. Hi Kelle! Such a great post as always!! My hubby and I started a non-profit shortly after our daughter Ruby (4) was born that grants scholarships to adults with Down syndrome for college. In three years we have been able to help 43 individuals rockin’ that extra chromosome achieve their dreams of higher education. It has been so awesome to see what peeps just like my Ruby Doobs are accomplishing all over the country!!! It inspires me everyday to be the best person I can be when I see how unbelievably hard they have worked to get there. Anywho, our website is http://www.rubysrainbow.org…check out our Rockin’ Recipients page…it will for sure put a smile on your face :) I will also send you a separate email with some more info!!

    keep on rockin’ it Kelle! You do a world of good helping breaking down barriers and stereotypes for the ones we love so much!!!

  47. As a mama a 14 month old son with DS, I say YES. Yes to everything you write, yes to turning that wrench every day, yes to a world with a double arc of challenges and rewards. Know that you are helping lots of people with your words–especially me. Your blog is a source of light and friendship to me, even though we’ve never met. You help me feel less alone and always committed to the very best for my Grant (my son). Lots of love to you. And please keep writing and being your awesome self.

  48. oh, you broke my heart! thank you though, a broken heart is an open heart. heaps of blessings to you and your family.
    p.s. i loved the way you are choosing to view speaking in tongues, i never would have thought of it that way;)

  49. As always, such a beautiful note. <3
    We are having a rainbow party too. on January 24 for our rainbow baby, Miss Alice.
    I cant wait to see what you come up with. I am not that creative. :)

  50. Kelle, I was never blessed with babies and so I can’t identify with you on that–though I’ve helped raise my younger siblings and babysat over a hundred children. Still, it’s not the same. I’M not the same as a mama.
    But I wanted to tell you (for what it’s worth–and what I believe you and Brett know deep down) Nella is beautiful, Nella is smart and she has gifts! Sure, it may take her longer to do certain things, she may not be able to do some things her peers can do. But isn’t that the same with all of us?
    I was that “different” child. Just like Nella in that it was through no fault of my own. My “disability” was that once I reached 4th grade, I began putting on some weight. I was an overweight child and that continued through high school. I was teased by some. In fact, in 4th grade, a substitute teacher actually suggested that I be “the water buffalo” in a school play because I was “the right size.” Cruel! I never told anyone but that stuck with me to this day. That, coupled with childhood abuse by a family member made me feel alternately invisible, like I WISHED I were invisible, inferior etc. But you know what? I ALSO had good times, good days, and friends. And Nella will have MANY good days and good friends as time goes on because you–her parents and family have taught her and your other babies that EVERYONE is deserving of respect, that we treat people kindly, that we celebrate differences. And, I’d like to think, since that day way back when I was in 4th grade, that teachers KNOW better than that rookie sub did and I know I have always and will continue to do my part in making the world a kinder, gentler place. You are doing fine, Kelle and Brett. In fact, you are doing better than fine! Nella, Lainey and Dash are proof of that!

  51. You know, I’m not so sure about the ‘don’t treat them any differently’ theory. My daughter is now 11 and my adopted son (also with Ds) is 4. I’ve heard many times, treat them the same, but as I grow and learn I realise that they are actually not the same, so they do need to be taught and treated differently. My daughter does not learn as fast as other children, so I cant treat her the same. She wont learn repercussions in the same way as a neurotypical child, so she needs to be taught correctly the first time. I have expectations for the future, but they are different to the expectations my friends have for their neurotypical children. I’m not sure what the point is that I am trying to make here LOL. It is different raising a child with extra needs, so we need to give ourselves allowances also. Its simply not the same! And I’m OK with that. Stay strong :-)

  52. Oh Kelle you are an exquisite writer. To be able to turn such deep, soulful feelings into precious words that touch the soul of others – it’s a true gift. Your Nella is beyond precious, as is your whole family. And this part? “But I can do my part in making the world a kinder place for her to thrive—for all my kids to thrive.”…this is everything. Thank you for sharing your highs and your lows. We’re all in this together. Xx

  53. Beautifully written post. We all worry and pray for our kids. Mine are 25 and29!You are doing a wonderful job with all three. Nella is beautiful and your blog has brought beauty and understanding to Down Syndrome that many never even thought about. Keep up your wonderful words. The world is a better place because of sweet Nella!

  54. so beautifully written with exquisite vulnerability, thank you. it will stay with me this week xx

  55. Damn I haven’t cried at one of your posts in a while, but today I did, ugh! This post makes me think of my Aidan (recovering from autism) and what will happen to him in the years to come. Now I’m about to have a panic attack just thinking about this!!!!!
    Nope, instead I am going to turn the wrench, love that A LOT!

  56. Kelle- What a beautifully written post. This momma understands your middle of the night anxiety attacks. I am going to get that wrench and turn it hard to the right. Loved that and I will do my part. I feel privileged that you allow us to follow your journey. My daughter is 9 and I gain wisdom from you. In our Ds world, we gain knowledge from all.

    Thank You.
    Amy

  57. Thank you Kelle for this post. I love the idea of turning the wrench to the right. It is what the world needs. I follow the same military strength- treat all my kids the same- mentality, but there are days where it witnessing the struggles is a little more painful than others. Perhaps it is in those moments of pain that God reminds us that he really is working through us all to help us all turn the wrench and make the universe more beautiful. Your post rejuivated me and motivated me to do more ☺️

  58. This is such a beautiful post. I completely understand so many of these feelings that you have so thoughtfully and eloquently dissected here. My daughter is turning four in a few days. It makes you take stock of the years–the pain, the beauty, the determination. My daughter has a rare genetic epilepsy–severe low-tone, poor growth. And she has no speech to speak of. I, too, speak a beautiful language with her over our typical three hour night time routine. It is the place where sometimes I can let go of those fears–where a mother’s love is just enough to make everything ok. Thank you for sharing your beautiful words.

  59. So inspirational. I will definitely keep turning the wrench.
    Xx

  60. She’s so lucky to have parents like you two! Keep up the great work! Beautiful post, beautiful girl!

  61. She is different…she is pure love, innocence and all that we SHOULD be. I had a sister that was mentally retarded and she was the best person I had ever known. She never spoke a word in her 42 years but I learned more from her than anyone else. I still strive to be more like her, to see the world and to love like she did…with her whole heart. She never knew evil, bad, jealously, hate, or sin…just as God had intended the world to be. Embrace the different because the world is more beautiful because of them!

  62. My 16 year old son, Ian, has special needs. I often found myself wanting to protect him from the bullies and hardships of the world. I am an older mom and he is my last one at home. But he reminded me one day when I was over coddling him, “Mom, I’m not a baby any more. I can do this. Let me.” Oh those words were hard on me and difficult, but he was right. He was ready. He, over the years, has reminded me over and over that he is no different than anyone else. In his eyes, he is the same. He knows his limitations and when he forgets, our IEP meetings remind him. As a parent, though, it is hard to let go and let things happen in their natural course. You are doing a wonderful job with Nella. She is still so small and needs your guidance. But she, too, will come to a point in her life when she’ll make a similar comment to you that she can do whatever it is she is trying to do on her own. And, like me, you’ll feel that fear and worry and then see her confidence and will let go…just a little. :) God bless you, Kelle. You are a woman of great strength and a wonderful mother. While you think you are so lucky to have Nella in your life, trust me, she feels the exact same way to have you and your husband in hers! – Karen

  63. Kelle, how beautiful. You made me cry those mixed-bag tears – the ones full of hope and pain all mixed together. Thanks for sharing and continuing to share. Nella (and all of us) are lucky to have you.

  64. My younger brother has special needs and we’re both adults now. I’m a new mom, so I’m starting to understand the love and heartache of parenthood. As I read this post this morning I kept thinking “yes, this is true, this is honest, this is how it is for us who love people who are different.” You’ve said so many things so beautifully in this post. Happy birthday to Nella!

  65. “thankfully—much like thoughts of paying bills or returning e-mails or traveling on a plane—fifty billion times worse and more paralyzing in the thick of darkness than it is in the morning. ”

    I’m right there with you. I’ve been waking up each night at 3:20 am ON THE DOT just filled with intense anxieties, miseries, a deflated sense of self worth, fears. It’s intense, sweaty and awful.

    In the morning I just much better. I feel just a normal amount of anxieties, miseries, deflated sense of self worth, fear. I can work with a normal amount. I can squish them all into a sideline of motivation and the kind of healthy fire-under-your-toes that keeps one working and alive.

    But the middle of the night? I hate it. You’re ever up panicking at 3:20 am, give me a call. I’ll be up too. Your fears are different than mine, until we boil it all down, then they’re probably pretty similar.

    xo
    lina

  66. One of your best posts. Happy Almost 5th Birthday Nella! I have two little girls at home and we’re turning that wrench every day. I see a brighter and kinder future ahead.

  67. Your words always captivate me. Such a beautifully written post.

    Some organizations that are making a difference:

    http://www.gatewayscs.org/

    http://www.pluscompany.org/

  68. I love your blog, and especially your photos, which have inspired me to take up photography as a hobby and set up my own blog. Thanx!

  69. I am going to turn my wrench right every damn day too!!! Annnnnnnd I’m going to try my hardest to get others to turn it too. For Nella, for Hazel, and for Lainey and Dash and Nola…Bring it!! xo PS Rainbows are perfect!!!!

  70. Love bedtime routine…now I am all in tears. You pull my heartstrings so well just by being YOU.
    As we say in Tejas, LOVE Y’all;)
    ~Melissa

  71. Really… turn that wrench and your turned on my tears. 46 years with my brother and I have loved every minute of it. He is a DS angel and has touched so many lives! Love this post, crying at work. Thanks

  72. You can always make me cry. Tears of joy, of growth, of grace, even of sadness. I have a daughter much, much older than Nella with special needs. You touch her when you speak of Nella even though they have different problems. You make me feel like just maybe someone besides me will love my girl.

  73. I love:

    “Hi Pain. I see you.” Everyone needs some goddamn recognition from time to time, and pain’s no different.

    And:

    When I think about Nella struggling to learn something in a classroom full of typical kids, or Nella graduating high school and craving the independence her siblings have, or Nella seeking fulfilling employment, I quickly hop right back to where it doesn’t hurt. It doesn’t hurt at night in bed when she’s smiling and surrounded by the comforts of what she knows, where she’s just the same as everyone else.

    Those two statements are so universally applicable to motherhood and, like I always do with your writing, I found myself nodding along to so many words here.

    Same, same, different, different. I am happy for both you and Nella in my life. xoxo

  74. Best post ever!!! I have a grand daughter that turned five in November, she also has blue eyes and blonde hair, and my
    entire family looks like The Kardashions, I even have 3 girls and a boy(we don’t act like them, lol!!!)
    Happy New Year, Kelle!!!

  75. Sitting here crying and just thinking, “turn the wrench right, turn the wrench….”

  76. Kelle, I must tell you I think your good friend with the brother is right. We have to be very careful not to put what we feel on our children or what we think they might feel. I remember the day I realized I was doing just that with my son, Elijah. My daughter’s Girl Scout troop was invited to walk in the local high school Homecoming Parade. As I was walking with her, I noticed her brother’s classmates lining the streets, talking having a good time. I then spotted my son, standing on the sidelines away from his classmates with his dad. I was heartbroken. By the time I finished the parade route and got back to my husband and Elijah I had already worked myself into a really good cry. So upset that after nine years of school with these same kids, he wasn’t really included. As I tried to explain to my husband how terrible I felt for Elijah, he started laughing at me. He told me I had it all wrong. The kids had been encouraging him, trying to get him to come over to them and watch the parade, they’d asked several times, but he wanted to stay with his dad, he liked the view better where he was. I completely read the entire situation wrong. Elijah loves his friends, but he did not need them at that moment. I’ve often felt like he was left out or I thought people didn’t ask him to go with them and it was him who turned them down. He’s one of the most confident people I’ve ever known. He thinks he’s awesome and frankly, I think he might just be right. Elijah graduated from high school last year and got his first paying job last month. He’s had a few stories written about him, I’d love to share with you. I hope you have time to read/watch them. Thank you!
    http://vimeo.com/59383140
    http://crusaderraidnews.com/2014/05/14/give-me-an-h-a-narrative-about-elijah-mayfield/

  77. Beautiful, moving words which brought me to tears…joyful, inspired, sad, scared and loving tears. I also have to admit, I’m a bit excited to see Nella’s rainbow party!

  78. I have Autism and my children do too…just to encourage you that while at times she will feel the differences as all do- and especially happens with minorities…I have found in my journey a has gotten the myth out of the way …we actually do not wanted to be treated “normally”. There is a difference between being treated with understanding and dignity and being treated like every other normally wired person. We are NOT wired normally so there are exceptions to our treatment. This is true in the medical world so it is going to also be true in the social world. We DO want to be treated with the SAME respect regarding our gifts and weaknesses that normal people do but this does not translate into being treated “normally.” In my experience “normally” means being forced into experiencing some sensory torture or having others be inconsiderate about the fact that eye contact feels painful to me or ignorant assumptions on what I should be doing even though I am dyspraxic…So I LOVE that in your post you meet her where SHE is at and appreciate who she is with differences and sameness…I think that’s what we all want- especially those in minorities of nuerodiversity!:)

  79. I am the mother of 3, 2 of who are girls. Worrying about one’s girls is a daily struggle. They all have insecurities. You are a wonderful mom and your children know they are loved.

  80. I cried all the way through this post. As a fellow special needs mama, raising a daughter with not only DS but Autism, everything you wrote spoke to my heart. Though our journey’s are a bit different, I still share similarities in this journey with you — the way we ask people to turn their wrench for our children (loved this!), the way we beg for our children not to feel pain and to not know they are different, the way we ask society to love more and learn to accept differences alongside with us.

    In our personal scenario, the autism diagnosis takes center stage and has created an additional layer of pain. We seem to be an outlier in an already small circle (that being the DS community). Day in and day out, my husband and I make the conscious choice to be brave, stay optimistic, and advocate our hearts out. And like you and Brett — my husband and I lean on each other through the tough days when fears and triggers, new and old, bubble to the surface and poke at our hearts. One taking the turn of being the cheerleader/uplifter, the other taking their turn at feeling the sadness and letting it pass.

    Despite it all; however, we remain focused on “big picture” and remind ourselves of how much joy, growth, and beauty she has brought to our lives (more than words could ever describe!). And in those reminders, we find meaning in her purpose, in her reason for life on this earth.

    I tell you, nothing re-centers me more than when I focus on her life’s purpose. It’s my safe spot. I think about how many lives my child has changed, how her differences have forced people to think outside the box, get creative, take steps back and reflect, and grow. I see her purpose in those moments. I see how she is changing lives, especially ours, even though she is almost completely non-verbal…which just amazes me. So many of us have voices and we don’t use them…yet here is my child without one, still finding a way to make her impact.

    I cry on a daily basis — usually tears of joy — because I have learned to appreciate the seemingly small yet ever-so-big things she does: a new word, a day where she had less behaviors, made good eye contact, “stimmed” less, or she looked at her baby sister and kissed her unprompted and without my nudging her to do so. Just yesterday she said to one of our ABA home therapists, “I want more salad please, (name). (her name), please.” She signed all the way through it too. I literally burst into tears as I counted with my fingers how many words she said. Two sentences that erased every bad moment I had that day. TWO. I still can’t believe it was two.

    Thank you for this post. Thank you for being so open and candid…and for sharing your journey with all of us. Thank you for bringing Nella into this world.

    Looking forward to sharing more of our story at the Spark retreat with you and the other ladies, and hearing more about your story as well. And Happy (almost) Birthday, Nella! There is so much love over the last 5 years to celebrate…all starting with beautiful, PERFECT, you.

  81. Such a thoughtful post and so touching. For anyone trying to rise above the pain in this world, your words resonate so thank you for sharing. Turning the wrench = a wonderful mantra for the new year!

  82. Hi Kelle,

    I’m a faithful follower and so often wish I was one of your kids, LOL! :)

    I did just come across an incredible photographer that I thought you may like too. Never say never. Some people may have to work a little harder, but it sure pays off. Take a look at Oliver’s pics …. oh and he just happens to have Down Syndrome.

    Never Say Never! If someone wants something and works hard the world is theirs, male, female, blond, brunette, Down Syndrome or not Down Syndrome. Enjoy this kids pics. He’s good!!

  83. Kelle, I hope Kayla is turning that wrench and paving the road for Nella and other young folks who happen to have D.S., showing that our children, go to college, drive and work. It will only get easier along the way. Sleep well.

    Patti McKeon
    kaylamckeon.com

  84. Just what I needed to hear today. Thank you!

  85. I can’t see through my tears! Like most (all?) of your posts about special needs, I so get it. Especially since my boys are only two months older than Nella so we are at similar stages of our journey. I was nodding along to your interaction with Brett because I am very similar with my husband. Thank you for putting so many of my thoughts into words.

  86. I stopped reading your blog a few years ago. It just didn’t feel real to me (just me). This post had me sobbing. The sleepless nights filled with fear. That’s real. Thank you for posting something that isn’t just unicorns and rainbows. This journey can be scary. It’s nice to feel that we aren’t alone. Thank you for writing this. I’m sure you can tell a lot of people truly relate.

  87. Thank you for your honesty, for going to deep places within your soul, for sharing a piece of your heart with your readers. Your words resonate with me, I could have written today’s post myself….almost word for word…including the anxiety attack in the middle of the night and worrying about the future, it’s all there. I find renewed strength, hope, and encouragement in the entries you write as they flow with such grace and kindness. Thank you for sharing about your journey with Nella (she’s a beautiful gift) it certainly encourages others.

  88. I have an 8 year old son with autism and I struggle with these same thoughts. We haven’t had to talk to him about it…yet…but we do talk to his 10 year old brother when he has questions about things Nathan struggles with. The best thing I’ve found to tell him is from Psalm 139
    13 For you created my inmost being;
    you knit me together in my mother’s womb.
    14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
    15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
    16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
    17 How precious to me are your thoughts,[a] God!
    How vast is the sum of them!
    18 Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.
    It’s so comforting to me to know that God created Nathan and Nella and everyone else exactly how they are and that we are all perfect in His eyes!

  89. Hi Sweet pea….I haven’t been here in a while….as usual your words are inspiring. Nella, really FIVE already! I hope her rainbow birthday is over the moon! Love to all…
    Bug & Ruby’s Gram

  90. My son was recently diagnosed with ASD and your post speaks such truths that just sit in my heart. Some days I am just so positive, but others I just crumble. Thank you for putting into words what we all feel!

    And I just love your sweet family and one day when I have time, your book is on my to-do list!

    God Bless from San Antonio!

  91. Kelle- You are so incredibly gifted at sharing your feelings through writing. This post is beautiful.The world absolutely needs to be filled with more kindness and acceptance and you are no doubt helping to make that happen.

  92. I think that sometimes it is hard for us mamas to think about acceptance, as when we were children, schools were poorly integrated. I am a rehabilitation counselor in Chicago and before I had my daughter, I ran a transition program at a suburban high school. I just heard that one of my favorite students (who has DS) was named homecoming king this fall. (http://abc7chicago.com/society/abc7-eyewitness-news-salutes-joshua-sylvie/346306/) This school had an amazing Best Buddies program, and the culture of the school greatly valued the diversity brought by my students. That wouldn’t have happened when I was in high school, but the tides are changing, day by day.

    I now run the vocational department for an NPO, and we help adults with intellectual disabilities find competitive employment in the community. Many of these adults are my age or older, and they demonstrate success despite of having had limited educational opportunities and no integration to speak of. I can’t wait to see how things change as this current generation grows up. Those with disabilities will have been given so many opportunities, and the “typical” kids that have been their classmates and friends will be business owners and hiring managers who can better see past their disability. The future is bright!

  93. Thank you for sharing your heart. We are 2.5 years into the transition to school. At our first funding app meeting I stopped at my friends house and cried and cried on her shoulder. When we received the news that funding for full-time EA had been granted for THREE YEARS (we’re in Canada, this doesn’t happen often), I was thankful but walked around the house taking some very deep breaths. That first morning of kindergarten shook me to the core. And yet. Here we are. She loves school. There are some amazing kids in her circle that adore her. They invite her to play soccer even though her “athletic abilities” are slightly less refined. They make space for her even when she finds it hard to talk with them. My heart soars when she says, “I wike ewe mommy” and aches when we have to wait and wait for words to come. A glorious journey, full of hope and hard. Thank you for sharing your world and words with us.

  94. I have a favorite uncle…Uncle Randy Joe…who also has Downs Syndrome. Sometimes when we were out and about he would see someone and say “he is like me”…meaning he realized that person was a little different from what the rest of the world considers normal. But let me tell you…in all Randy’s sweet innocence he was never sad about this. He still thought he was 100% a Rockstar…the best thing God had ever made. And that was exactly how he should have felt!

  95. celebrate her differences
    as you do with your other children
    it is there they will find themselves
    not in the sameness of others.

  96. Nella is beautiful!

  97. God,
    Thank you for Nella, Dash, Lainey, Kelle, Brett, & the grown boys :) Thank you for giving this world women like Kelle who strive to see the beauty and create more of it. Thank you for Kelle and her bravery and her heart. God, you are good to us. Bless this sweet family with even more joy–the joys that are beyond this world, that only come from You.Thank you for people loving people.
    Amen.

  98. Hi there Kelle,
    it´s the first time I comment on your blog. I don´t know if Nella had her birthday party already or if you are looking for other rainbow ideas, but I just found this site and I wanted to share.
    http://www.tablespoon.com/rainbow
    Wish you all all the best!

  99. Kelle, I read your blog from Italy. I know little about Down syndrome “directly”, but I’ve seen here on TV something that really, really touched me. It’s in Italian but I think you’ll understand what’s important. It’s a series, a docu-film about young men and women who had the opportunity to work in a Sardinian hotel, “Hotel 6 stelle” (six stars). Should you like to have a look at it, here it is:
    http://tinyurl.com/kedyw3j

    Ciao!
    Paola

  100. I love this post! Thanks for sharing!

  101. I don’t usually comment, but thank you for this post. It’s beautiful. Speaks right to my heart. My son will be four next week. I read your blog from my hospital room bed and from behind my sad tears and now from behind my very grateful ones. It’s not always easy, but oh how lovely and rich our lives are with him. Blessings to you and your family.

  102. I hope for many of the same things for my children, yours, and for all of us. You have a beautiful heart and I am even more inspired to “turn the wrench” after reading your words. Thank you for so eloquently sharing, as always. xo

  103. A rainbow theme is so fitting for sweet, colorful and bright Nella!

    happyherestill.blogspot.com

  104. My 9-year old has special needs and I wrestle with those thoughts all the time. I love her, she is beautiful and more perfect than I ever imagined but reality is, she’ll have a harder time adjusting to life. It gives me anxiety and it’s sad. She’s perfect for our family but the world doesn’t always see it that way. I understand, and I guess this is just the beauty and pain of our journey as parents. When things are hard, its really hard but when things are good, they are just too perfect and right, isn’t it?

  105. Just wondering, as you mull over the future (and because of the photography link 😉 ) if you’ve ever seen the work of this young man? http://oliverhellowell.com/about.html

    I love his work – but I found out for the first time today that he used to be a super-cool skateboarder. I’ve tried skateboarding. It’s… shall we say, not for me. I’m seriously impressed by all his skills! :)

  106. Nella is glorious! I love to see her beautiful pictures!

    I am another special needs mom, and I so understand the pain of watching them become aware that they are different, of letting them figure out how to navigate the comments they will encounter. My daughter has limb differences and just started a new preschool, she is hearing a lot of “she doesn’t have feet!” What I wouldn’t give to make it all just work for her like it should. If you ever have a spare minute, I invite you to check out my very small blog at http://www.withtheworldatherfeet.blogspot.com

  107. MarGaret says:

    I just read your blog and loved it. I listened to your book “Bloom” read by you. I loved it. I was at work and someone came up to my desk and I had tears in my eyes and she asked me if I was okay. I said I was. It was from listening to your story and learning about compassion and falling in love with Nella’s journey.

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