I “celebrated” six years on WordPress this week. Somehow I’ve written 347 posts prior to this one. Writing provided the cheapest form of therapy I never wanted to need. You don’t get to pick whether or not your child inherits a progressive neurological disease, and trust me, NO parent would pick that. Six years ago, that doctor looked me in the eye and told me that my son has muscular dystrophy. I thought I’d never recover from that shock, but here I am six years and 348 little stories later.
Today was my son’s last annual neurology check-in and check-up as a chronological child. His doctor today reminded me that should my son choose, I may not even be invited to this appointment next year! I can still see his eleven-year-old face as he underwent the first of those strength and resistance tests. I can see him sitting beside me, asking why my face looked funny, contorted in my futile attempt not to cry. I can see his little face, and brother’s even littler one, each asking if muscular dystrophy meant he was going to die soon.
Today, he is stable, and in this unstable world of ours, that is a celebration.
He keeps his diagnosis close. Since the first days post-diagnosis when he told a few of his middle school buddies, he’s told no one. No one. He rarely talks about it even to his dad or me, and I worry that the weight he carries inside takes a toll. Keeping a secret is exhausting work, but I don’t know his MD story; I can only know mine.
He shared with me that he “came out” to one of his closest friends this week, and relief is the only word I know to capture how I felt. Letting even one new person in, a person he trusts to keep his secret safe, is in line with an Everest summit bid. Maybe to you it seems like one step, but from my view, yeah, it’s that big a step for him.
Though today’s was a good one as they go, I hate these visits. As you’ve learned about me over these six years, I don’t manage anniversaries well. In my twisted, little mind, every significant calendar space is highlighted and circled, underlined and in bold with lights flashing around the date, and today felt no different to me. It hurts, still, just having to be there, knowing that something in the way my DNA combined with his dad’s at that burst of a microsecond in time resulted in my son having this rotten disease. Fate, genetics? Whatever it is, the story always ends with guilt.
Turns out, this kid is stronger than me.