I sat down to write this post about Down syndrome four times in the past three days. And during those four times, Brett was watching one of our favorite shows and I chose to sit next to him on the couch, falling asleep five minutes in. And Lainey came crying to me with, “Mom, my mouth tastes like throw-up.” And Dash and Nella built a block tower together so high that Brett came running for me to take a picture. And I forgot about Lainey’s spelling test and had to fit a cram session in of all those tricky apostrophe words. I never got around to my post.
This is exactly what I wish I knew almost five years ago. That the third copy of the twenty-first chromosome that seemed to be a life game-changer would soon be swept up by the bigger things in life that define us. Tucked neatly in the back with playtime and school assignments and couch love in the lead.
My response to Down syndrome—however fortunate or unfortunate it is—has been much like my response to other hard truths in life: Let’s put some balloons on this. I realized just how much this is true recently when Heidi called to tell me that she broke her foot. “I have a foot boot,” she reported, “and I’m supposed to walk with a walker.”
“Dude,” I jumped in. “No big deal. We’ll decorate it. Clip on one of those obnoxious bike horns so you can scare people who walk in front of you. It will be hilarious. Oh and we can yarn bomb the legs. Get some balloons, tie them—” I stopped myself. “Oh my God.”
“What?” Heidi asked.
“I’m doing it again.”
“This is what I do, Heidi. I have to take every bad thing and turn it into a party. I don’t think that’s good. I mean, think about it, I do this with everything. I’m glitterfying. I mean, I’m joking but still. I’m silver linifying the shit out of something that sucks. Sorry about your foot, man. I meant to say that. What does this say about my ability to handle hard things?”
Heidi laughed. “Uh—that you have a coping mechanism that so lines up with your personality? Kelle, I swear to God, the day any of us calls you and you don’t do that is the day I worry. This is why you’re you. We need the balloons. Now tell me more, what color yarn should we use?”
I thought about this, specifically in relation to Nella’s Down syndrome. In the beginning, I needed balloons and lots of them. I needed a whole constellation of rainbow-colored balloons like the grouchy old man in Up so I could tie them to my house and sail high and higher, away from the world, up in the clouds where I could peacefully sort things out until I was ready to land. This pissed a lot of people off. Over time, I’ve untied the balloons, no longer needing them, letting them wander off to find someone else; and our house has landed on a sturdy foundation. Raising a child with special needs—although we aren’t defined by it—does take seriousness and proactive thinking and a mission to both equip our children with the tools they’ll need to face the world and prepare the world to accept our children. They’ll need a hell of a lot more than balloons—both our kids and the world.
But I still keep a little cluster of them—especially the yellow ones—because life is hard, and I’ll always need balloons. They’re less about Down syndrome and more about me. And on this blog and in my advocacy, you’ll see those balloons floating from time to time. When you see them, just know they’re there for me. They make me do my job as mom and advocate and person in this world a little better.