Skip to main content

Messy Moments

By May 31, 2019Tracy's Blog

Charley and the ladies — Spring Break 2019.

WARNING: Typically I sit down to write a blog post when a particular moment or experience strikes me as meaningful in some way, and I want to share that observation. But today, there’s no possible way I can write a succinct post, let alone impart a pithy message. Today, this week, this month, my brain and my heart are inundated with diverse emotions swinging wildly every which way. And it’s all coming to a head this weekend, with its major milestone events. I’m all over the place, and so is this post.

Prom. It’s tonight. The prom has long loomed as a source of anxiety, ever since Charley was very young and we were coming to terms with his diagnosis. In our devastated state, the high school prom was a potent symbol of a life our son was “supposed” to have, a life Duchenne would never allow him to have. As I write this, Charley is sleeping. He’s determined to stay in bed until noon so he can enjoy tonight’s prom and after-party into the wee hours of the morning. He’s going to the prom with the date of his choice, an amazing – and beautiful — friend who has been by his side for nearly 10 years since they met in fourth grade. And he will do the “walk-in,” the red carpet-style entrance that our whole small town turns out to watch. It will take a lot out of him and the wheelchair will be waiting for him at the end, but he will walk that red carpet. I would try to explain the feelings that accompany this experience, but I know I’ll fumble it so badly. There is just no way to express the cacophony of relief, gratitude, sadness, and joy jumbling inside me.

Graduation. It’s on Sunday. I am proud and I am scared. I am happy and I am sad. I am grateful and I am freaked out. I think of Adam, a boy I know with Duchenne who lost his ability to walk when he was 8 years old. I think of Nash, who died just two weeks shy of his 18th birthday and never got to experience graduation. At the same time, I think of my friends from my “normal” life whose kids are competing on teams and traveling abroad and dancing at music festivals. That unleashes a crazy range of feelings from deeply grateful to utterly brokenhearted. But even if I resist the tendency to compare our situation to others, I’m still a bundle of conflicting emotions. Thoughts of the small-town community that has supported and nurtured Charley throughout his childhood collide with fears of my vulnerable boy making his way in the big city. “Getting into college is so exciting,” Charley observed last week. “But when you actually have to go it’s kind of scary.”

Unauthorized party. It was last weekend. Last weekend, Charley hosted an unauthorized party with no adult supervision at my parents’ house on the lake. We were furious. How could he be so disrespectful? How could he be so foolhardy? We were shocked and dismayed by Charley’s irresponsible behavior. But I’d be lying if I didn’t admit to a competing emotion, the polar opposite of anger and disappointment. He has so many friends. He loves parties. He’s doing typical teenage shenanigans. I’m filled with gratitude for this tsuris I never thought I’d have the privilege to experience.

So there it is, in all its messy glory. I’m not even making an attempt to tie it all up in a tidy bow. There is no clear point, no take home message. I’m just recording life as it unfolds.