I never expected to cry tears of joy at the sight of my daughter in a wheelchair.
Several weeks ago, Syona tried out her very first set of wheels that she could propel herself. As she (very quickly) figured out how to move the wheels backwards, forwards, and around corners, my eyes filled with tears so big that they clouded my vision.
Three years ago, when Syona was diagnosed with cerebral palsy, the “threat” of a wheelchair lingered in the back of my mind like ominous storm clouds on what was supposed to be a bright, sunny day. But it didn’t take long for me to realize that living under this dark cloud did nothing but cast shadows over the joy that Syona gives us daily. After all, as one of Syona’s wise therapists told us, “If Syona doesn’t walk, well, that’s what wheelchairs are for.”
And now Syona does walk—in her own way. She can take steps with her walker or with the support of an adult. She also understands that wheels help her transport from place to place, and we got her a wheelchair stroller that opened up her whole world. But over the past year, Syona’s made some huge functional gains—her hands and arms are working better than ever and she’s continuously expressed a desire to move around independently. Like every other almost-four-year-old, she wants to do things by herself.
Her understanding of her physical challenges is deep, and she has a keen sense of awareness when she needs to ask for help. So, when she’s wheeling around in her new trial chair she tells us when she wants to try by herself or when she wants to be pushed.
The bumps, bruises and mischief that come to kids in toddlerhood are finally coming to Syona in as well. As she wheeled around bumping into the dining table, one of our caregivers said that we should get covers for the corners so she didn’t hurt herself. My response was to let Syona bump into the corner and learn that she should avoid solid wooden surfaces.
Of course we take some safety precautions—like putting gates on stairs so there are no accidents—but for the first time she can get into some mischief if we give her a bit of room, and every kid deserves that.
When we head out in public I’m sure that she gets some curious glances. But I don’t notice the looks. I’m so wrapped up in Syona. However, of all the impressions people can experience when they first see my daughter, pity is, by far, my least favourite. Syona was strong enough to survive several medical crises. She is smart, motivated and very capable of doing things her own way. Pity isn’t something I feel for myself or for her. You shouldn’t either.
I know there are many parents who dread the idea of their child getting a wheelchair—and I get where that concern stems from. I was there too, and everyone deals with things in their own way. Some people have asked if I’m scared that getting her a wheelchair will discourage her from walking. My answer? Not even a little bit. Syona isn’t defined by her mobility. I don’t care how she gets around, so long as she can get around. And the truth is that if Syona is going to walk one day, she will walk. Having a wheelchair won’t stop her.
Yes, there are times where the world is less accessible. A deeper rut in the sidewalk can be a serious tipping hazard. A door without a switch can be a challenge. And man, do I need to get back into regular workout sessions so I can lift the chair without hurting myself. But to me, watching Syona push herself in her wheelchair feels just like what I imagine watching a child’s first steps feels like to other parents.
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.