Sometimes for a few blissful minutes, I forget that Charley has DMD. To you that might seem impossible, since we’re constantly faced with daily reminders of Charley’s disease. Every evening we follow a rigorous routine of supplements and stretching. Since long walks are challenging, we often have to break out our handicap parking placard. And while Charley’s brother and sister juggle soccer games and karate lessons, we always have to make sure Charley occupies himself with ping pong, board games and other less strenuous “substitute” activities.
Yet despite the significant accommodations we make for Charley on a daily basis, we still sometimes get lulled into feeling like he’s just a typical kid. He has such a passion for sports and outdoor play, and he’s such an energetic little bugger. He is just not the type to sit inside and mope about DMD.
This week, we got a harsh reminder of how fragile Charley is. During a recess soccer game at school, Charley was playing goalie. He almost always plays goalie because running up and down the field is way too exhausting for him. He blocked a kick with his hands and the ball bent his handbackward at the wrist, breaking the bone. After a few minutes of rest and ice, Charley got back in goal to finish the game. But back in the classroom, his teacher could tell Charley wasn’t himself. She called to say, “For a kid who doesn’t generally complain about aches and pains, I can tell something was wrong.”
So to the ER we headed, and sure enough the xray revealed a buckle fracture of the left wrist.
The hardest part is that we just don’t know how to be the best possible parents. We want him to play outside; we want to encourage his “nothing can stop me” spirit…but we don’t want him to break another bone. Charley’s bones are fragile due to chronic steroid treatment, so he is more susceptible to fractures than other kids. At his age, a broken leg could mean the end of ambulation. So it’s pretty scary to give him the leeway to play outside with his friends and wrestle with his brother and participate fully in whatever recess activity he wants to do.
Charley has already started arguing with us about how long he has to lay off the sports. I hate to limit him…I want so badly for his exuberant spirit to prevail. But the broken wrist incident knocked the wind out of my sails, I must admit. With these new therapies so close, I know we have to do everything we can to keep Charley on his feet for as long as possible. The responsibilty of keeping him safe and sound has never felt so weighty.
DMD is heavy duty, and I know the thoughts I express here can be pretty depressing. But you know I will always end on a positive note…We’re lucky that as far as broken bones go, this was a minor fracture. And it was his left arm, thank goodness (he’s a righty)! And two of his 18 cousins also happen to have broken arms this week…so Charley’s in good company. He can’t wait to compare blue casts with his cousin Izzy to see who has more signatures!