Focus on What You Can Do
I work in healthcare, and yet at the time that Kaysen received his diagnosis, I had never heard of SMA. The doctors told me not to Google it, but in that moment, you can’t help yourself: you Google it. As I scrolled through the results, I could feel my world crumbling around me. In that period immediately after Kaysen’s diagnosis, we grieved what we thought our family’s life would look like. With the perspective of time, we’ve come to understand that SMA is a different kind of condition than what that first page of search results might make you imagine.
SMA isn’t a barrier to living a fulfilled life; it simply means finding what a fulfilled life means for Kaysen.
At the age of two, going on three, Kaysen is small enough that we don’t face too many accessibility barriers. When we go out, I don’t have to put him in his wheelchair; he will usually be in a stroller or I will carry him in my arms. Right now, where we encounter the most significant barrier to access is at the playground. As a parent you want to be able to do all of those normal things with your child without even needing to think about it. Unfortunately, it often takes planning to find a playground that can accommodate Kaysen’s needs with ramps and accessible swings and play panels. At the same time, conversations surrounding accessibility are growing and I hope that inclusivity can become a key consideration in the development of community spaces like the playgrounds where Kaysen and I like to spend most of our time.
We know that we may run into accessibility issues beyond the playground soon, especially as Kaysen grows older and bigger. However, I try my best to always focus on what Kaysen can do and not on what he can’t do. Sometimes—a lot of the time, if I’m being honest—that can be hard. When Kaysen is around other kids, it’s easy to focus on the ways in which he is different. But there are also so many ways in which he is like every other child his age. He loves to play with his cars and spend time with his step-brother. He likes to read and play with puppies at the park. He is so obsessed with his iPad that it can be hard to tear him away from it at times.
Most importantly, there are countless ways in which Kaysen is uniquely himself, and as his mother, I wouldn’t change a single thing about him. I have so much hope and positive energy for Kaysen’s future and the phenomenal things it will contain. He’s going to be a doctor someday—if he wants to be! Ultimately, whatever Kaysen chooses to do, I believe that he will be able to do it. He may be in a wheelchair while he does those things, but I don’t see that as a hindrance in his life.