It probably doesn’t surprise anyone reading this that, growing up, I was determined to become a writer. (Or, more to the point, a published author, like Stephen King, because how cool would that shit be? Write a novel, get critical acclaim, scare a bunch of people and earn a boatload of money? SIGN ME UP.)
One of my favorite characters in any book was Harriet from Harriet The Spy. She was a bona fide writer — her class columnist– and I idolized her. Every day in third grade I’d come home from school, put on my trench coat, and hide in the closet to “spy” on my family. Then I’d go outside on my “route” and “spy” on my neighbors — I’d look in their windows with binoculars and everything. (Sorry neighborhood peeps; I wasn’t aware that was illegal.) I filled dozens of composition books with musings and observations and vowed that I would use my notes one day to write a sprawling book of incredible fiction. (And then I re-read them one day when I was fourteen, got terribly embarrassed and self-conscious, and chucked them all in the garbage. So much for that plan)
I even dressed like her — trench coat and all. God help me, I did.
All this to say — I’ve always wanted to turn my life into a story. Even the ugly parts, the embarrassing parts. I’ve learned not to throw them away. Now that I’m older, I appreciate them more.
When I emerged from the haze that was Henry’s diagnosis, something that absolutely rocked me to my core, I started writing about it. The shock. The ubiquitous sick feeling in my stomach, thinking about raising him. The absolute terror of anticipating a child with medical special needs.
And then I had the baby and it was kind of like
Well that was not nearly as bad as I thought it would be. Huh.
The terror went away almost instantly — not because Henry had zero medical issues, but because he wasn’t just the sum of his diagnoses any longer. He was a little boy with a personality and his own quirks and likes and dislikes, and oh yeah, he had feet that turned inward or whatever (big deal). So Henry was born and the terror disappeared. But the urge to write did not.
More and more as he grew, I’d write about spina bifida as it related to Henry — mostly on this blog, but sometimes in an actual magazine or speaking engagement, to my eternal amazement. And more and more, I toyed around with writing a book — something about disability, something about acceptance, something about how kids with spina bifida are normal and awesome and totally-not-terrifying like I had once imagined they would be. One day, during an interminable wait in the allergist’s office, I noticed that zero books at the doctor’s office featured kids with disabilities. Quickly, I searched Amazon on my husband’s iPhone and noticed that books featuring spina bifida kids (or any “disabled” kids, really, were few and far between). It bugged me.
Eureka, I thought. I’ll write a children’s book. Immediately I grabbed a napkin out of the diaper bag and started writing down some thoughts — in crayon, no less. A children’s book would be perfect, I mused. Not only could I do my part to normalize the ‘bif and write a lead character who happened to be disabled, but I had an urge to write and a fabulous cartoonist at my disposal. Our children’s book was going to kick ass.
Before we left the allergist’s office, I had a rough outline and even a title — Spina Bifida and That’s Okay. If I were fourteen, I would have crumpled it up and thrown it away, because I realized later that it was didactic and embarrassing, but I’ll share it with you now, because I’m older and it’s good to learn from our embarrassments: The book profiles several kids with spina bifida and their various abilities — Johnny can walk, Lucy walks with assistance (AFOs or KFOs), Gertrude doesn’t walk at all (wheelchair). And that’s okay. Some kids use feeding tubes, some eat through their mouths. Blah blah blah. And that’s okay.
Eventually, I realized I wasn’t talking to a hypothetical kid audience, and that’s where the embarrassment kicked in. I wasn’t talking to kids at all.
I was talking to other potential parents. I was talking to myself. My child might not walk — and that’s okay. He might have a learning disorder — and that’s okay. His “normal” won’t look like everyone elses’ “normal.” That’s okay. You’ll be okay. We’re okay.
One thing I’ve noticed so far, on our spina bifida journey, something that’s shocked me, is that it’s not the kids who need to be coaxed into accepting people with spina bifida — it’s the adults. Whenever we’re at the grocery store and a kid sees Henry’s cast, that kid is the first one to run over and shout, “COOL!” The parent, lagging behind him, is the one pouting and going, “Aww! What happened? Poor guy!” In general, It’s the adults who are terrified, who abort “defective” fetuses in staggering numbers, who hem and haw over making things like playgrounds accessible, who treat disabled people like props and publicly humiliate them (I’m looking at you, Kanye). If anyone needs a primer on love and tolerance, one thing is obvious: It’s not the kids.
My family, when they learned about Henry, was unanimously supportive. We were all terrified, shaken, but there wasn’t one family member who didn’t reach out and help us in whatever way we needed, thank God. But it was my cousin Grace’s reaction that really stunned me, in the best possible way. When our Aunt and Uncle sat her down and explained that Henry wouldn’t be able to walk or run around like all the other cousins, she weighed that fact for a minute, and then shrugged. “That’s okay,” she said. “We’ll just play on the floor. Some of the best games are on the floor.” That is the reaction I wish I could have had, instead of crying for three days straight and thinking my life was over. Kid with a disability? Can’t stand or walk? Well … whatever. We’ll just play on the floor. The floor is better anyway. Grace, at six, handled his situation with more tolerance and acceptance than I could have dreamed of, as an adult twenty years her senior. That’s impressive, dude.
Grace’s reaction, essentially. Along with every kid I’ve ever encountered.
I’ll never write Spina Bifida and That’s Okay, because kids like Grace simply don’t need to be reassured. Spina bifida is “okay” — and she ended up telling us.
(By the way, I realize that Henry is not yet two, and my experience with other kids and disabilities is painfully slim. I realize that the minute I press “publish,” Henry could be teased and taunted at the playground by some kid who is scared of and confused by the fact that he can’t yet walk, that his feet are weirdly shaped, that he still has bandages covering his foot from his recent surgery. And if that happens, I’ll eat my words and write the stupid book.
… Right after I burn that kid’s house down.)
