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.
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?
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.”
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.
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.
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.
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.
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.