My son is sitting on the examination table, legs crossed as he holds an iPad with two grimy hands. He looks at me with joyful naughtiness as he motions to throw it on the floor.
“No thanks, buddy!” I catch his eyes, and then place the iPad back on his lap. “Mama has to listen to the doctor now.”
My son’s eyes dart between us, then focus back on his Elmo app. I wait for his face to have a minimally engaged glaze before turning back to the surgeon.
“Can you explain that again?”
I think it’s the third time I’ve said this. I already understand what the surgeon is telling me. There’s a technique – which I invented, thank you very much – that involves pleading ignorance when I’m faced with bad news from a doctor. I’ve perfected this technique, as I’ve had lots of practice, and because it allows my brain a few minutes to catch up with the heart. The heart is always first to react.
Right now, my brain is repeating the surgeon’s words: he needs another cast, but my heart is painting a picture of six more weeks of crawling, of being carried up and down stairs, of my son being pissed off on a daily basis that he can’t go in the kiddie pool. And then there’s the whole “not walking” thing.
He used to walk. A few months before he turned four, I watched his first steps during a physiotherapy session. We knew it was going to be “the” day, and I made sure I was prepared, creating room on my phone for a copious amount of video. I remember his shaky gait as he started with a few small steps, the therapist’s hands hovering close to his hips.
He stopped, swatting her hands away. “On my own!”
And so he walked – on his own.
Last summer we became happily overloaded with unexpected firsts. He opened tall cupboards. He took out every piece of plastic from a shelf in the pantry, moving them to create a tower in the living room. He walked in our garden for the first time, stopping and bending over to pick up old leaves and dead bugs, collecting them for daddy when he came home from work.
He walked on his own for about four months, and then, after fighting over a toy with his younger sister, he fell in an unfortunate way. He twisted his body on the way down, fracturing the left femur and prompting the surgeon to operate only three months later. We had accepted the cycle of breaking a bone and then having surgery to fix it as an intrinsic part of his genetic condition. But it still sucked.
Now he’s almost five and I’m listening to a surgeon tell me he’s about to have another full-leg cast for another month. The last surgery didn’t quite work. After five years of breaking, waiting, and healing, it felt like we were going backwards.
My son’s head lifts. “Cast?”
“Yeah, buddy. I’m sorry. We need another one.” That four-letter word is probably the worst thing you could say to him, and there is nothing I can do to stop the tears once they start. I pick him up, and the surgeon and I explain that it’s a special, magic cast.
“This cast is different. You are allowed to stand on it and practice your walking. The more you stand, the stronger and better your leg will feel. ”
He’s crying even harder now, because his body has memorized what a cast means: itchiness, uncomfortable sleep, no pool time, and the grand finale, eventually having it sawed off with a device that, while tiny, sounds like a lawnmower.
“But I don’t want to walk!”
I’m frozen now, trying to ignore my heart and listen exclusively to the brain. I should say something, but I’m blank. I think of the things I know I can’t say: Sure, you want to walk! Everyone wants to walk! You can’t crawl forever!
Obviously, my son can read my mind, because I promptly hear, in between sobs, “I just want to crawl.”
My heart, oh my heart.
How much do I push for the walking to happen? My son doesn’t eat chocolate cake for dinner every night and go to bed at 11 p.m. He would love to, but I’m the boss of things, for now at least.
I’ve educated myself to the brink of exhaustion on issues related to disability and autonomy and ableism. I not only want to be an okay mother to my disabled son, I want to demonstrate what respect and dignity looks like, so he can command these things later in life. I want to show him that his devices – specifically his walker and wheelchair – are wonderful pieces of equipment that provide independence. These devices will allow him to go to university, ride public transit, and go to doctor’s appointments by himself.
It’s not like I forced him to endure a comically treacherous physical regime for hours a day – we only went to therapy one hour per week – but I am guilty of saying things like, “Try another step,” or, “Let go of me,” or, “Stand and get the toy yourself.” I wonder if I’m sending a message that using his glorious wheelchair is beneath or less-than walking on two feet. I would never want to send that message.
And now I’m trying to find the middle ground between pushing him to his full potential, while also sending a message that it’s perfectly fine if he never actually walks again. Using a wheelchair, sitting down, isn’t giving up.
The cast came off two weeks ago, the one I falsely assumed was going to ruin his summer. The time went faster than I thought, and the only annoyance was the thick coating of grime on his body.
I don’t dread the day when he starts asking specific questions about his health, because I’m ready and prepared and I’ve had years to think about it. The part I dread, the thing I can’t prepare for, is his reaction to this information.
He’s going to learn that he is different from almost everyone else, and that the world is designed for people who walk on two legs. It will be him against the bipeds.
His level of understanding isn’t quite there yet, and so far the only question related to disability put an immediate smile on my face. We were at a store in the mall, and he discovered a fun game called “hide from mama.” For the first time in his life, I couldn’t catch him. He was faster than me, and I credit my being able to find him to his gleeful, echoing laughter. It also helped that a few attentive strangers were nearby to point me in the right direction.
“Mama, why doesn’t everyone use wheelchairs so they can go fast?”
I have a son who can’t walk. He doesn’t appear interested in doing so at the moment, and he sees people without wheelchairs as the ones who are disadvantaged.
Both my heart and brain agree on this one: I’m a pretty lucky mom.