When Movement is Your Stress Relief, but Your Child Has a Physical Disability
I have been on the move for as long as I can remember, since I was a kid with grubby knees crawling across the deck at our family home in the woods. Call it genetic predisposition. Call it the environmental engineering of my parents who both prefer active to passive activities. Call it whatever you want, but for better or worse, I am more relaxed when my body is in motion.
So, when my son, Charlie, was born premature with a rare syndrome that sent him home attached to cords and tubes, I found myself in the difficult position of being more stressed than I had ever been with no way to relieve it. In order to be the best mother I could be, I needed an outlet, something to release the pressure, but how could I go for a run with a child with a trach? Later, when he was diagnosed with cerebral palsy and it became clear that movement of any kind would be difficult for him, it hit home even harder. Here was a child who could not move his body with ease and here was I, his mother, who found herself easiest in movement.
But as any parent to a child with special needs can attest, nothing is impossible. The minute you say “never,” you narrow your life and your child’s. This is not a miracle story of Charlie learning to walk and then run and then win at the Special Olympics. This is the story of how we found a place in between, where movement looks different, but still eases both our psyches.
I started small. The day Charlie came home from the NICU, we went for our first family walk. Me, my husband, and Charlie headed down our street in one very slow march, along with the pulse-oximeter, the suction machine for the trach, and the dog. It was a circus. But it wasn’t hot yet in late May and the magnolia trees had just blossomed and this would be the first time he was out in the world. I took a deep breath, the first real one since he’d been born. It was beautiful and perfect, for the first twenty yards. And then the pulse-oximeter fell off the stroller and cracked on the sidewalk. I panicked. My husband panicked. Charlie watched the leaves blow in the wind. It was the happiest I’d seen him and despite the kerfuffle, I let that sink in and began to hope. Maybe just maybe we could connect over this kind of movement together.
At seven months old, Charlie had surgery to reduce the size of his tongue. It was brutal and gruesome. It was also our longest stay in the hospital since the NICU. By the time we left, we were all paler and weaker and more tired than we had ever been. The presidential elections were one week after we were discharged. I could have driven up the street to our local voting spot at the agricultural center. But instead, I strapped Charlie in the Baby Bjorn, shouldered the suction machine and we went for a hike. It was a cool, early November afternoon. I was nervous Charlie would be too cold or tired, even in the carrier, but halfway up the hill, when we hit the gravel path that would take us up into the trees to the voting center, he smiled a huge smile with his newly shrunk tongue all covered in stitches and he laughed, and it was everything.
As he grew older, we walked twice a day in the summer when I was off from my teaching job. In the cool of early morning and the late evening when the fireflies lit our way, I would buckle him in the stroller long after he was too big to look “normal” in it. We drew stares, but who cares? We were out and moving and that was the point. He would beg for those walks and sign “more” when our house came into view and he knew it was almost done. After my twins were born, I bought a triple stroller and continued the tradition, albeit a little more slowly. And when he got his first wheelchair, we began an after-school ritual: walking laps at the local park. He would occasionally roll himself if he felt strong enough, but mostly I would push and talk about what we were having for dinner or doing that weekend, or I would point out the flowers I knew the names of and he would wave at all the people we passed.
We’ve found a way to hike together too, with Charlie in the hiking backpack that can hold him almost until he grows taller than me. We’ve hiked the Colorado Rockies on vacation and the Tennessee foothills that are our home. We have discovered what I never thought we would: a way to find freedom in movement together.
Jamie Sumner is a special needs mom, author and blogger.
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This story has been quite inspiring for me. My son has Pompe disease, and over the last two years, his disease has been progressing. Which I didn’t realize that that was going to happen, but that’s another story.
Thank you for your wonderful story, it has inspired me to get moving again. I’ve become somewhat stagnant because of this and the COVID-19 SIP.
Jacksen’s not into going with walks with me anymore, but I’m just going to take him. I have to, I gotta get out of this house, lololol.
Thank you again and happy hiking!
Darcey