We Are Writing Our Own Book
There is a wide-reaching support network for those living with SMA, but for our family, that community starts at home. As parents of a child with SMA, we rely on one another to provide Kaysen and his step-brother with the care and love that they deserve.
Our journey to bringing our son Kaysen into the world felt like a roller coaster ride. After experiencing a series of miscarriages, we had decided to put our hopes of having a child on hold to focus on our wedding plans. A month after we put down all of our deposits, we were pregnant again, and this time around, it stuck. It was so special to get married in Jamaica with four-month old Kaysen beside us.
In my wedding vows, I called Mark “the calm to my storm.” That quality couldn’t be more important in a partner raising a child with SMA.
It was shortly after our wedding that we started to notice that Kaysen sounded constantly congested. Our doctor thought that he was just catching cold after cold, but eventually Kaysen was diagnosed with SMA at eight months old, just four months after our wedding. As newlyweds with a young child, our life already felt like a juggling act at times. The news of Kaysen’s diagnosis meant that there were now even more balls to keep up in the air.
I like to say that our family is writing its own book. We can’t know what the next chapter holds, or even what the next page holds, until we’ve written it. In more literal terms, caring for a child with SMA means that we can’t always project ourselves into the distant or even the near future. As someone who likes to think and plan ahead, Mark has struggled with this unpredictability the most. He has always liked to look really far into the future and I often feel that I can’t even project myself a week ahead.
Part of what has helped us face this uncertainty together is accepting that the book that we’re writing might be very different from other families’ stories. What matters is that it’s our book and we’re fortunate to be writing it together.
Kaysen’s diagnosis hasn’t fundamentally changed our relationship, but it has strengthened our support for one another beyond what we could ever have imagined. I deal with a lot of the everyday preoccupations of Kaysen’s care and Mark would say that I am our family’s rock, but the truth is that I get so much of my strength from him. He is an equal part of our family’s foundation. Parenting a child with SMA, especially as an interabled family, is a question of teamwork: we couldn’t do it without each other.