We’ve definitely entered a new phase in terms of Charley’s awareness of his disease. We are transitioning out of the “honeymoon phase,” when the limitations of DMD haven’t really set in. Until recently, we could kinda sorta blend in with the crowd. Our evening routine has always been tough: In addition to the usual bedtime routines Charley has to take 14 pills with a powdered mixture and then the “yucky drink”, a soy-based food supplement from China that smells and tastes pretty much like sewage. We also have to stretch him for 15 minutes every evening. And in the mornings before school — amidst the mayhem of frozen waffles and unruly bedheads and socks that don’t match — we throw in 12 pills plus a morning dose (2 oz) of the yucky drink. So while these rituals that start and end the day have always been intense, in between we have been lucky enough to function almost like a typical family. Charley is mainstreamed at school, and for the most part he enjoys the same activities as other kids. He has to limit his sodium and sugar intake and he has to rest when he gets tired, but other than that he has been keeping up great.
Over the past few months, however, Charley and his brother have been developing more of an awareness of Charley’s limitations. Just the other day, they were playing with a soccer ball in our backyard. Sam had to retrieve the ball for the 10th time, and in frustration he yelled “I hate this!” Thankfully he quickly clarified his outburst. “I don’t hate YOU, Charley,” he explained. “I love you. I just hate your condition.” It took a while for Sam to understand his feelings of anger, and in fact it is still a “process.” Sometimes his anger is directed at Charley himself, and that is really hard for everyone.
Charley has always been less of an intense personality than his older brother Sam. If he is angry about having DMD, that anger has yet to surface. He does express sadness, and that is very hard for me to bear. This winter he was devastated that he could not ski. One Saturday, I made the idiotic mistake of bringing him with me to the ski shop to buy a new pair of gloves, as we were on our way to go sledding and he had lost his umpteenth glove of the season. We ran into a family we know, and all three kids were booted up, clearly on their way to the local ski mountain. Then a friendly young salesman said, “Hey buddy, are you ready to hit the slopes?” Charley just stared at him, and when we left the store he burst into tears.
We adapt with the times, though, and as soon as the weather improved we bought Charley a bright red electric Razor scooter so he can keep up on the bike trails. Charley’s new ride has brought back the smiles, at least for now. On a recent trip to the Franklin Park Zoo, he had more fun zooming around the crowded walkways than he did looking at the animals. The highlight of this outing for Charley was practically taking out three toddlers as he zipped past them at top speed. The fact that scooters are not allowed in the park – only he was allowed — made it all the more exciting.
I’ve got lots of adventures planned for this summer…elderly ladies and toddlers beware…Charley is on the loose!