The Hallelujah Moments I Experience as I Parent My Child With a Disability
My 5-year-old came home with dirt on his nose — one long dark swipe down the side, like he’d spent his afternoon up a chimney. His dad had taken him to the park with his twin brother and sister. Early October afternoons look a lot like summer ones here, hot and muggy with the whine of insects, but the fact that you know cold weather is coming propels you out the door. It puts a firm hand to your lower back and shoves.
Fall isn’t easy for a kid like my son who’s in a wheelchair 90 percent of the time. The colder wind ushers in a trapped feeling when we can’t go outside as much as we’d like. He can’t run to get his blood pumping on those walks we take. I march, briskly, like a governess with my charge, rolling him along. He loves it though, pointing to people and rocks and orange construction cones placed at random on the park path.
Soon enough, we will move our walks to the mall and I will join the little old ladies in their too-white Aerosoles and elastic waist khakis. I love them with their balled-up Kleenex and arms pumping, and they love my son. He waves at them and they melt, visibly, wobbling and veering from their path. We will walk our laps together. It’s not a bad way to spend winter, if I can keep myself from homing in on the Auntie Anne’s kiosk.
On this one Saturday, though, it was still warm and so when the darkness finally chased the kids inside, I clicked on the mantel lamps just above my son’s head and took note of the dirt. After a second, I let out a big shuddery breath that made my husband look up from where he was peeling shoes off the twins. It was the same noise I made when the credits rolled at the end of “Beaches,” full of hormones and ellipses. I sent up a silent hallelujah, a little shoulder shrug of happiness. It was the first time he’d ever had dirt on his nose.
I know this is not a big deal, or shouldn’t be. I know kids get smudged all the time. Like the kitchen floor, life just trudges over them in all its happy casualness. But my kid is not most kids. There’s not much room for digging in the dirt or swinging from trees from his vantage point. He’s the book-reading, video-watching, iPad-navigating savant, by choice and by default. There are no creeks and forts for him, and that’s OK. Our afternoon walks have been enough to tame the call of the wild. But for me, there is always a niggling question, like a gnat in my periphery, when I see his brother and sister run inside covered in grass stains and mulch: Do you wish that for you?
So when I saw the dirt, I didn’t grab a baby wipe right away. I let it stay for dinner. Only when it was time for bed and baths and all the rest did I send it off with a fond farewell. I did not ask how he got it. It could’ve been when my husband went down the slide with him or when he grabbed at a low-hanging tree branch on the walk to the swings or maybe it’s just dirt from the car door. Lord knows the vehicle has got enough grime inside and out to make us all look like spelunkers.
To me, that smudge meant something. It meant he’d looked up from the world of books and apps and videos to get in the muck. It meant he’d lived out in the great wide open for just a little bit, like all the other kids who come home messy and tired at the end of the day.
I think all parents have this moment at some point with each child when they do the one thing we didn’t dare hope they’d do: say thank you after dinner, figure out quadratic equations, do their own laundry, run into our arms instead of away from them. It’s the smallest of victories that feels like the biggest. It’s this tiny step that gets us to the next.
We’ll be back in the mall soon enough, happily back at our laps. I’m glad he got this day. I’m glad I got it, too. I hope there will be more once winter passes.
A version of this post first appeared on Parent Co.
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