My five-year-old daughter has cerebral palsy. She's a remarkable little girl, and I love being her mom. But sometimes certain words or events trigger something inside me—something that takes me back to those first days when we just learned of her diagnosis. And I'm reminded of the pain and confusion my husband and I sometimes feel when we think about why she has cerebral palsy. It happened again recently.
Last week, I attended a conference held by the Ontario Association of Children’s Rehabilitation Services (OACRS). I usually attend the event every year as it's filled with fascinating, interactive sessions that leaves you thinking. This year was no exception.
I had an opportunity to listen to a colleague talk about the benefits of a new program that allows families to mentor other parents who have kids with special needs. One of the other sessions I attended was more medical in nature and focused specifically on the brain. The specialist who delivered the presentation was fantastic and able to communicate very complicated information in a way that made it understandable for those of us who don’t hold medical degrees.
The presentation should have left me feeling good, however, it just made me mad—and then upset. I realize it wasn’t a logical reaction, but it only served to remind me of how small the odds were that my daughter Syona wound up with a brain injury that resulted in cerebral palsy. She wasn’t a micro-preemie, and I didn’t have a high-risk pregnancy. It just didn’t make sense at the time—and it still doesn't, years later.
When Syona was diagnosed we didn’t spend a lot of time asking “Why me, why her, why us?” It just didn’t feel like a productive line of questioning. Anytime I caught myself going down that path, I gave myself an immediate answer: Why not us? We had a stable family, solid jobs and lots of love to support a kid with extra needs. Really, we were in the best possible position you can be when you have a child with a disability. I feel blessed to have that every single day.
But watching the brain scans on the presentation slides somehow brought me immediately back to the medical terms on Syona’s neurological reports: Words like “extensive damage” that chronicle just how much of her brain has been impacted by her injury (which later resulted in her cerebral palsy). It made me angry, simply because the chances of this happening to her—to us—were so small. But it happened anyway. It was out of our control.
I’ve attended other medical presentations and had the same reaction. Even though they act as a trigger and take me back to Syona's early days, I still assume I will "grow out of it." After this latest experience, I want to gently remind myself that the logical side of my brain isn’t always the one that wins out. I want to remember that I can consume (and understand) this information—but perhaps a public, in-person session isn’t the best outlet for me to seek more information about what exactly happened to my daughter. In short, I’m trying to learn to cut myself a little slack. But it's still a work in progress.