May 23rd. Since 2013 I have struggled with this day on the calendar. Diagnosis Day. It was the day everything changed. Every SMA family (or any other family that receives a serious medical diagnosis) remembers the moment that forever changed the trajectory of their family’s life.
I spent the first half of 2013 scared. Bennett wasn’t meeting some physical developmental milestones and I knew something was wrong. He wasn’t sitting, wasn’t crawling. We had gone from specialist to specialist, running tests for months, trying to figure out what was wrong. I remember at one point we thought it was infantile botulism. (Can you imagine HOPING your child had infantile botulism? Well, I did.) Never did I expect the SMA diagnosis. For one thing, I had never heard of it before. But it also wasn’t at the top of the list of the many specialists we went to see. It wasn’t even a second-string possibility. After months and months of testing for radically different conditions, living with not knowing what was wrong had become the status quo. So, on May 23rd, a few short weeks after our baby boy turned one, I wasn’t expecting the phone to ring and destroy life as I knew it forever.
I don’t remember much before or after that moment. I only remember my terror at the words that I couldn’t possibly hear. That couldn’t possibly be true. The one possibility we had discussed that I couldn’t handle. Spinal Muscular Atrophy. The genetic disorder that was the number one killer of children under two. I raced home that afternoon, unable to be away from my precious child one second longer. I needed to hold Bennett in my arms, to feel his physical presence and his light, to wrap him in my love and protection.
I spent a few weeks in a fog of grief and fear and mourning. But a few weeks after the devastating diagnosis, I made a decision—to choose life, to choose joy. To not waste a precious moment with the time we had left. I could spend Bennett’s life, however long it was to be, grieving, or I could spend it living. And I chose the latter.
This picture was taken at Chris Greene Lake. It serves as a reminder for me of the day in early June when I roused myself out of the grief of Bennett’s diagnosis and into life again. This was a day of joy and adventure.
As Bennett continued to grow and thrive and bring laughter and love to those around him, I shifted towards acceptance of our new normal, even as every year brought more medical equipment and therapies and complications. I made the decision day after day to choose joy over fear. Or maybe, to choose joy alongside the fear, in spite of it.
Bennett’s sudden death threatened to change all that again. The fear and terror I thought I was familiar with, the fear of his loss I had spent so many sleepless nights worrying about when he was alive was oh so much worse after his death—unlike many hard things, the reality of living with your child’s loss is so much worse than its anticipation. I no longer have Bennett himself to hold when I am afraid. He himself was often the thing that kept me going in the hardest and scariest of moments. The laughter that he and he and his sister created together, a duet that soothed all that was wrong in my world, I hear now only in my memories and dreams.
Choosing to live rather than mourn all those years ago didn’t guarantee me a Disney ending. It didn’t save my son. After all the care and the miraculous medicine that helped him grow stronger, Bennett still died. Bennett. Still. Died.
But Bennett’s life was about more than his diagnosis or even his death. For Bennett was light and laughter and love and joy and community and mischievousness and wonder and beauty and curiosity and play. He was middle of the night snuggles and mutual adoration between him and his sister. He was an advocate of creatures great and small and lover of rocks. And he was my greatest teacher. He taught me to finally stop living for tomorrow and to start living for today. He taught me that fears for the worst shouldn’t stop you from hoping and fighting for the best. He taught me that one person can transform a community, can change the lens in which we all view the world. He taught me that sorrow and fear and loss can sit side by side with joy and laughter and light. He teaches me still.
And so, on the anniversary of Bennett’s Diagnosis Day, a few days past what should have been his 8th birthday, I continue to choose life—to choose joy. It isn’t easy. Nearly every day, sometimes multiple times a day, I have to claw up through the pain and the grief to find the light again. But as I learned in 2013, I have a choice. I could choose to spend the rest of my life consumed by my grief, or I could use that grief, use my time on this earth, to recognize and relish the possibility of joy. To imagine a place where families like mine, who choose to live in spite of terminal diagnoses, can go for adventures. To build Bennett’s Village, a place where folks of all ages and abilities can come together to laugh and to live and to play. The dream is worth fighting for. Every minute of every day.
Kara (Bennett’s mom)