A brand new year always brings with it new possibilities in our lives and the hope of potential new treatments for DMD. But, as Gus’ mom, I just see one more year that has passed without a cure – one year closer to him losing the ability to walk, to use his hands, to hug us, and eventually, to breathe. A new year carries with it the same bittersweet quality as each of Gus’ birthdays. We throw a big party for him and he loves it. We make him whatever he wants for dinner, and get him a new “Wildlife Ecologist” toy, but underneath it all, our hearts break because we know what age brings for a boy with DMD.
This winter is proving to be particularly difficult. While Gus wants to be more independent at age 8 ½ , he is starting to need more assistance. He is a true NH boy who loves the snow, even though dressing up in snow gear is challenging. It’s also hard for him to move well in snow pants and boots, as they are an extra strain on his muscles, but we bundle him up and take him out. He has to be pulled up the sledding hill, of course, and he often falls off the sled because he doesn’t have the strength to hold on. Last weekend, Steve and the boys were invited to a sledding party. Gus was so excited, he could barely stand it! When they arrived home, though, Steve looked completely deflated. “It was just another instance where Gus is so clearly unable to keep up with the other kids,” he said. He then told me that when Gus fell down, he couldn’t get up. This is new this year, one small step in Gus’ decline. When he fell and Steve ran up to him, “Are you ok, buddy?” He responded with the look of death and said, “Dad, go away!”
Even as he insisted on sledding alone, resulting in one crash into a tree and one complete flip over, Steve tried to always stay by his side, invisible, but there. Steve knew and I know that he probably shouldn’t be sledding at all. The steroids he takes can cause his bones to be brittle. But, while he can still walk, how can we deny him this little bit of normalcy?
Clearly, this was all much harder on Steve than Gus. Gus is used to being a little slower and trying a little harder. He came home saying that he had a great time. But even that is heartbreaking; it’s only a matter of time before sledding will be a thing of the past for him.
I asked Gus that night if sledding was hard for him. He responded, “Not really, why?” I said, “Well, because your muscular dystrophy sometimes makes it hard to walk up the hill, doesn’t it?” He gave me the most incredulous look and then he snickered, “Why are you talking about THAT, Mommy?” In his mind, it was just a normal day. What we wouldn’t give to stop time right now.
Last night, when I was putting him to bed, Gus asked, “Wouldn’t it be terrible if I broke my arm? “ I told him yes, but a doctor would put a cast on to make it heal. He said, “But I wouldn’t be able to write, or play with cars, or eat my food or anything!”
Of course I explained that it would only be for a short time. But the panic in my heart and mind was intense. How will we ever explain to him that Duchenne muscular dystrophy will also take these skills away from him and he will never get them back? How can we celebrate the New Year and new opportunities and growth, when our son has a progressive and deadly disease?
But we do. We do it for him…and for our other children…and for ourselves, really. Because it is impossible to push forward if we continually think about what the future holds. We constantly walk the tightrope between being hopeful that we might find a cure or effective treatment, and being in denial. Maybe this is the year when everything changes.
Happy New Year – and please hug your healthy children close and be thankful!