My husband and I visited our obstetrician's office for an ultrasound when I was 20 weeks pregnant and received the shock of our lives: Our son's spinal cord had not fused together during his development, resulting in a hole in his back from which his spinal nerves protruded.
The condition, called spina bifida, often results in paralysis below the spinal defect and other medical complications, such as hydrocephalus [excess fluid in the brain] and clubbed feet. Children with spina bifida may also need assistance standing and walking, if they're able to stand or walk at all.
Holding back tears, we catalogued a mental list of worst-case scenarios, including that he would eventually need a wheelchair. As my husband and I gathered our things and numbly made our way out of the office, I kept asking myself: Will he be able to walk? Will he need a wheelchair? For some reason, a wheelchair represented everything I didn't want for my child: dependence on what I considered a big, ungainly machine, possible exclusion from his peers, a sedentary life, and, worst of all, the stigma I associated with a wheelchair.
Fast-forward several years. Our son, Henry, is now 3 years old, a lover of cars and trains and Barbie dolls. Verbally and developmentally, he tests far beyond what's normal for his age range, despite his hydrocephalus. He sings constantly and knows a few children's books by heart. And when he boards the bus to preschool every morning, he does so with the aid of a walker and an umbrella stroller. He uses the walker for getting around the classroom. For long trips or walks outside, his aide pushes him in the stroller.
Within days of starting school, Henry's special education coordinator was on the phone with us. "Henry is so smart and so social, we want him to rely on his aide as little as possible," she told us. A walker, though good for short distances, was too tiring for long trips and inefficient for holding his own with his able-bodied peers. As we talked over the various options, the special education coordinator dropped a bomb: "We think a wheelchair would help him have that extra bit of independence and allow him to keep up with the other kids."
Four years ago, I would have been devastated. But as I talked to Henry's coordinator on the phone, I felt elation welling up in my chest. A wheelchair could help Henry engage with his classmates on the playground and make friends. The wheelchair wasn't a worst-case scenario, I realized, it was a gift. When the coordinator mentioned something about a motorized wheelchair, I actually gasped. Henry would love to ride one of those!
We agreed to start using a loaner chair from the school's physical therapist for the playground and the gym. A day later, Henry came home with a picture of himself maneuvering around the gym with a note from the special education coordinator that read: Henry loved using his chair today! Here he is with some friends throwing a ball around during open gym.
Our "worst nightmare" has come true: Our son uses a wheelchair—at least on the playground, when transitioning to another classroom, and for long distances. And with it he continues to be a loving, intelligent, incredibly social little boy. We've come to realize that it matters very little how Henry gets around or whether he maintains some leg function or none at all. He's been an enormous blessing—and now so is his wheelchair.
Sarah Watts is a freelance writer in Chicago. Her work has appeared in The Washington Post and The New York Times, among others. She enjoys binge-watching shows on Netflix and spending time with her husband and two children.
