3 kids in white shirt
Ben profile img

You Are Not Alone

Our family’s journey to joining the SMA community

As we were recollecting our journey with SMA, my son, Ben, wasn’t sure when exactly he had been diagnosed with SMA. He turned to me, asking me for the exact date of his diagnosis. I was able to immediately cite the month and year. As a parent, you never forget a moment like that, although the pain of it fades with time.

At the time of Ben’s diagnosis, finding information and community was a significant challenge: we used dial up internet, and just checking your email was a chore, let alone trying to learn about a rare genetic condition. Some families join groups and foundations immediately; we weren’t ready. In fact, for years, we resisted it. I remember almost joining a group and then not being able to bring myself to follow through. We needed time to process Ben’s diagnosis as a family, before we felt ready to join a larger community.

Even just getting over the initial shock of the diagnosis took a few months. It felt like we were moving through a fog, doing our best to be happy parents to a happy child, despite the sadness that we felt at the time. Our family likes to joke that this is where Ben’s distaste for vegetables comes from. Desperate to keep Ben happy, we’d give in to his desire for ice cream over broccoli, and that sweet tooth has stuck with him into early adulthood.

When Ben neared the age of ten, we started having more and more questions about chairs, hygiene, surgeries—all of the things that you ask yourself as a parent to a child with SMA. We were able to turn to families with older children who had the answers to our questions. The more we eventually opened up to the SMA community, the more support we found. My wife met other like-minded parents who could act as resources and champions. We found families who were willing to pass down equipment like beds and chairs, which otherwise cost huge amounts of money.

Looking back, we realize how invaluable that sense of support is for a family, no matter when they feel they are ready to join the community.

Our close friends and family are also an essential part of our support network as a family. Ben has an amazing group of friends and it’s very special to get to be a witness to them all doing normal teenager things like watching the Raptors and spending time hanging out in the backyard. On warm days, they all pile into our wheelchair van and drive to the next town over for coffee or a day at the park. They’re very comfortable around each other, too. They’re always able to joke around with one another; Ben and his friends have created an environment where nothing is off-limits.

I don’t think I’ll ever tire of seeing Ben doing the things he loves with the people he’s chosen to surround himself with.