featured

If You Could Take Her Down Syndrome Away, Would You?

I took the kids downtown this past weekend, an impromptu decision brought on by taking the dogs out early Sunday morning to be met by what us Florida folk call “a chill”–a drop in temps I’ll liberally define as “comparable to a northern fall.” Regardless, it was the kind of weather that begged us to be outside, so I dress the kids in long sleeves, throw Dash’s trike in the trunk, text Heidi with an invite to meet us and head south toward the fancy part of town we go to window shop and play at the good park.

“I’m doing this every weekend,” I always tell myself at the sight of so many people out and about, enjoying Fifth Avenue–mostly spry well-dressed rich people walking their dogs, but there are a few regular folk who help us blend in–that is, if you don’t count Dash ramming his tricycle into the front window displays of stores we have no business walking into. Or Nella, investigating the nether regions of street statues to see if their privates are showing.

 photo print 78_zpswwnqx1dp.jpg

But the dogs–so many dogs, and my kids want to stop and make friends with every one of them.

What’s his name?
Is he nice?
Can we pet him?

 photo print 80_zpsbgqczgsw.jpg

We pet Boomer and Kiki and Reba while their owners wait patiently and smile at my kids.

Heidi talks to a woman who’s sitting in the sunshine, enjoying a coffee. I’m distracted, making sure Dash is gentle with the dog he’s petting, but look up when Heidi calls me. “Kelle!” She smiles. “She has a son with Down syndrome,” she says, pointing to the older woman who’s intently watching Nella play.

“You do?” I say, “How old is he?”

There’s a pause that prepares me for what I know follows. “He passed away,” she answers. “Thirty-two years ago.”

“I’m sorry,” I say. “I bet you miss him every day.”

We talk a little bit about how things have changed for people with Down syndrome these past several years before I gather the kids to keep walking, and then Heidi grabs my arm.

“I’m sorry, Kell. Is that hard to hear?” she asks.

“I’m used to it,” I smile. “I guess I’m just thankful that so much has changed.”

 photo print 49_zps8tl04sl2.jpg

For one, how did word travel thirty-two years ago? How could a mother tell the world the secret story she discovered when she took that baby home? That the joy and love her child radiated and his will to learn and contribute was far more powerful than the narrative she had been told to believe about him. How could she spread word of the powers of human connection she was discovering–the way she saw things differently, the way all her investments in a life of comfort and convenience had crumbled only to give way to something new she didn’t realize existed–an understanding that allowed her to love better, fight harder, and appreciate people for every ounce of spirit that beams from their very existence.

 photo print 77_zpsg277ckfo.jpg

Do you know what the life expectancy was for a person with Down syndrome in 1983? 25.
And today? 60, with many people with Down syndrome living into their 70s. And while much of this is due to the end of inhumanely institutionalizing individuals, I believe so many of the actions that have changed the outlooks for our children’s future are due to the power of story–moms and dads and grandmas and grandpas, brothers and sisters and friends shouting to the world, “She is worthy, she is smart, she is beautiful, she is happy, she is funny, she is capable, and you know what? She’s a lot like your kid.” Now that we have more tools to be heard, seen and to tell our stories, the world is expanding.

This month, for Down Syndrome Awareness month, I’ve read countless stories from families of a child with Down syndrome–how much these kids are loved, how much their families can’t imagine life without them, how they believe in them, advocate for them and continue to discover–alongside their children–what life is truly about. Based on the algorithms of who I follow on Instagram, my entire Explore page is full of babies of Down syndrome, so I frequently pop in to see these new families beginning. Behind the rawness of the uncertainty of those first few months, the love is palpable, and that’s the most powerful foundation a story can have.

Last month I spoke at the annual conference for the Utah Down Syndrome Foundation, the theme of which celebrated the power of storytelling in advocacy. Yes, things have changed and yes, raising a child with Down syndrome in 2016 is so much easier than it was in 1983, but there’s still an outdated narrative that our stories need to flood out–that this isn’t some sad thing that happened to us that burdens our everyday life. Someone in the crowd raised her hand and asked a question I hadn’t been asked in a long time–“If you could take her Down syndrome away, would you?”

It’s a hard question to answer. We try and separate Down syndrome from who Nella is and often compare her challenges to that of asthma or allergies in that it’s just something she has, not something she is. And yet if you asked any mama if they would take away asthma from their child, I’m sure they’d jump at the chance. No one likes to see their child go through physical struggles, especially ones that affect the opportunities they’re presented with.

But I can’t imagine Nella without Down syndrome, and in a way it is part of who she is. There’s a love, a vibrancy, a compassion, an awareness of people’s need to be seen, and a determination to take in the world that is just…well, Nella, and I don’t know how much of it may be wrapped up in the mystery of that extra chromosome.

 photo print 35_zpsqqiqifjd.jpg

Would I change her? Not her spirit, not her face, not her will, not her heart. Not the way she’s taught me to slow down and stop expecting life to roll out exactly how I planned. Not her crescent moon eyes that squint into tiny slits every time she smiles or the way, when her hand is in mine, I don’t worry so much about tomorrow because this moment right now demands all the emotion I can muster…and that’s happiness. She exudes it. So I will attempt to change what I can–the world around her. To value her, offer opportunities, expand its definition of beauty and success, and to celebrate the many things that make us different.

As for quality of life, I’ve got six years on this now. Our cuddly baby with the big blue eyes and milky skin grew into a girl, and we entered realms I used to worry about–public education, IEP meetings, bigger social settings and opportunities where her challenges are more prevalent and less cushioned by the bliss that is babyhood. But you know what? Life continues to get more beautiful, stretching my perspective, demanding growth and yet, without fail, offering more–more beauty, more love.

 photo print 8_zpsxtnpngr9.jpg

I am so grateful to be living this story as her mom in an age where I can watch, listen and learn from the many others who share it with us.

 photo print 47_zps3pdlqgvz.jpg

If you haven’t seen these, three online mama friends shared their stories in beautiful ways this month, and they made some incredible impact in the media: Amanda Booth and her little Micah, Oakley Peterson’s video of Welles’ story and little Sofia, self advocating like a boss. Your voice, your stories…the world needs them. It’s the most powerful advocacy tool we possess.

Happy Down Syndrome Awareness Month.

Comments

Leave a Comment
  1. xo

    :)

  2. Thank you Kelle for your continued work and honesty. It definitely gives me the courage to continually speak out for my baby girl. Little by little. Day after day. I am holding her right now as I read this and squeezed her just a little tighter.

  3. Love it! Beautiful thoughts that I share many of those feelings. Thanks for putting it into words :)

  4. This is so good. I don’t normally respond with my own blog. But I answered this question about my daughter with Down syndrome as well. It’s not an easy question.

    http://blog.littlewritermonkey.com/2014/12/11/the-red-pill/

  5. I love this. All of this and everything about it. My son has Williams syndrome and he is such a blessing. It’s so hard to separate Jett from WS. Both the challenges he faces and the amazingly wonderful personality characteristics. I have to agree with you, while I wish I could make things easier for Jett in the challenges that WS causes him to face, I have no desire to take the WS away… If there was a way to add the genes back into his 7th chromosome I’d be very tempted to because of the health implications his deletion causes, but I don’t know that I would because I would be too scared of losing my sweet lovingly kind hearted little boy. Xo thank you for writing words that touch my heart.

  6. I’ve been thinking about this a lot, would I take Lyla’s polymicrogyria away if I could? Yes in a heartbeat yes, I’d be lying if I said I wouldn’t change her for the world. I would take away her brain disorder…but only if it didn’t change her personality or her determination or her spirit, I like to think those things are part of her not caused by her brain not forming properly. Given that this question is theoretical as there is no cure then in my perfect world Ly,a would be the fabulous 4 year old she is now but she would be able to walk and talk and run and her body would listen to her more easily than it does now. It’s not good for my would to spend too much time in a pretend perfect world so I’ll be grateful that my real world is pretty awesome even with polymicrogyria.

  7. That final line was meant to say it’s not good for my soul…damn my fingers for not keeping up with my brain!

  8. Beautiful. Perfectly worded. I loved your answer at the conference and I love your more detailed answer here. So glad we’re in this together. Xo

  9. Please read the blog Marty’s Moose Tracks ~ you will love her!

  10. I have to see a neurologist every 3 months..
    She sees patients for a multitude of conditions.
    Some young people..are in their twenties..in wheelchairs..some with head restraints..others ..jut bent in their chairs..when we went in one time..I said..it must be so hard for the parents..(the parent..one is usually there..loving every minute of being w/ their twenty something child..)
    My neurologist said..they know nothing else and are the happiest people..and the parents tell me how grateful they are for these loving caring children..she also said I see some teens going through such times..that sadden the parents..rebellion etc..
    she said all I get from these parents is how grateful they are that their child is always loving..
    these children don’t walk..many don’t talk..and they need support even in their chairs..and they would not trade a thing.
    I love the mom you are.
    I think your kids are so unbelievably adorable and smart and ..dare I say STYLISH?♥
    Everything..
    Maybe I have said too much..but your children..are all very special..uniquely..in their own way♥

  11. Marjorie Dineen says:

    Kelle, this is a beautiful and powerful story you have told. I am sure you will touch many hearts by it. Blessings to you and your family. You are a beautiful person, as is Nella.

  12. I have a nephew born in 1983 and he is thriving. Nobody ever told us he would only live until he was 25 thankfully. :)

  13. This is beautiful. And thank you for knowing that the mama whose son died 32 years ago misses him every day. I’m sure she appreciated this important acknowledgement (and seeing your lovely family).

  14. Beautifully said Kelle. I’m forever grateful for the impact Down syndrome has had on my life. Our family learns so many wonderful life lessons in just our normal everyday life with Frankie. I wouldn’t trade this experience for anything. For he magnifies the beauty in our world.

  15. What a beautiful post. I wanted to share with you that there is a lady in our church with Down Syndrome. Her parents were told that she wouldn’t live five years, and we just celebrated her FORTY-NINTH birthday! She sings in the choir and is loved by all.

  16. Jessica Dion says:

    I haven’t caught up with your blog in a while and.. oh my goodness, what a beautiful post to read!

  17. Thank you KellIie for your blog. When my son was in the hospital shortly after birth 27 years ago, the baby in the room with him had down syndrome. The parents had shared with me their struggle to have a baby and how loved he was. The next day when my grandmother was staying with the child so the parents could go get something to eat a resident came in the room and asked how the parents could continue with the pregnancy knowing their child had down syndrome! The grandmother broke out in tears. I matter-of-factly walked over To the resident asked him never to return the room and told him that this baby would be love no matter what more than he would ever know. I also explained to him that Before he ever his M.D. he better learn the meaning of two ours empathy and compassion. He did not have a crystal ball he did not know for sure with this child would be capable of.

  18. P.J. Coldren says:

    I can’t speak to having a child with Down’s Syndrome: I am, at 63, childless by choice. I do have a sister who is Developmentally Disabled – enough to know she’s not like the rest of her siblings and cognizant enough to tell a doctor who looks at her palms for a simian crease, “I’m NOT Down’s.” If I had the chance, I’d take away her disability in a heartbeat. Not because it might make my life easier, although as the designated caregiver in my family, it most certainly would. Not because I am ashamed of her – I am so proud of who she is and the strides she’s made in her lifetime. I would do it because she has said, “I don’t want to be retarded.” I know that all people have problems, issues, “different” abilities. She doesn’t want this particular one. If I had the power to give her this, I would. In a heartbeat.

  19. Jessica Chamberlain says:

    Thank you for sharing this. I recently wrote a blog myself on whether I would rid of my sons Autism if I had the chance. I didn’t get much feedback on it from other special needs mothers so it feels good to see I’m not alone in these thoughts. Our children are very much beautiful just the way God intended them to be <3

    Oh and can I just say that it was beautiful to come across your blog via ChildBirthInternational for my Doula training/certification. I read your blog after Nella's birth when you came to terms with her disability and to see how much shes grown and you've grown made my heart happy. You're amazing and doing awesome!

    xo

  20. We are blessed with a perfect grand baby. Crosby,and there aren’t even words to describe the joy he brings to our family and so many, many others.
    You said it eloquently. Thank you.

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>