It struck me years ago during a meeting at Gus ’school. He was in kindergarten at the time, and already having some difficulties due to his weakening muscles. He struggled to hold a pencil correctly, to cut a straight line, even to keep his gaze on one spot for an extended time. The teacher suggested that we “create some goals” to “move Gus forward.”
“It will help us know if Gus is progressing,” his teacher said innocently. There was a long pause.
“Duchenne muscular dystrophy is degenerative,” Tonya said. “This may be as strong as he gets. If he doesn’t get weaker – if these things don’t get worse – that’s progress.”
“Well,” the teacher replied patiently, “We need to track progress in the conventional way…”
Every parent of a child with Duchenne muscular dystrophy remembers the moment they heard the diagnosis. Inevitably they asked, “What can we do?” The simple and unthinkable answer? “Nothing.” When we first heard it, however, most of us don’t understand how profound that ‘nothing’ is. A Duchenne patient cannot exercise to get stronger. He can’t “work harder to battle the disease…” It won’t “get better with time.” Nothing we expect is true. We are raised to believe that we can surmount any obstacle if we work hard enough. The challenge of this diagnosis is that ‘working,’ in the way we often think of it, speeds the disease.
One of Gus’ doctors tells the story of a dad who was in the Marines. He was in denial about his son’s illness and insisted on exercising his son’s muscles – unable to accept the idea that exercise would not make his boy stronger. We all know the end of that story: Through exercise the dad actually accelerated the muscle degeneration and, by implication, brought on his own son’s death sooner. That harsh, upside down and backwards truth impacts every moment that we spend with our sons.
When I’m asked how Gus is doing these days, I often respond, “OK, he still walks, but he is in his wheelchair a lot of the time” In one sense, I am excited and happy that he can still walk at all; on the other hand, I hate it every time he does because I know that every step is a risked a fall that would make that step his last.
Then there are birthdays – we celebrate the fact that we’ve been blessed with another year with Gus, and we mourn the fact that another of the too few precious years that Gus will be alive has passed.
A friend of mine once said of his so with Duchenne, “It’s as if he is a perfect ice sculpture of himself and I desperately want to stop him from melting…” We both knew, however, to complete the metaphor, that we can’t simply put our sons on ice – they are boys who want to play in the sun. We let them, and find joy in their vibrancy and life. They are magic, like Frosty the Snowman. And like that mythical character, they won’t be held back. “And he said, let’s run and we’ll have some fun now before I melt away…” So we watch our sons melt because we love them too much not to let them.
Gus’ well-meaning teacher simply didn’t understand. In the world of duchenne, the words “conventional progress” make no sense. In fact, when it comes to duchenne, the only ‘progress’ we can depend upon is the steady ‘progress’ of the disease – which is no progress at all. It is, of course, the exact opposite, the ongoing regression of a boy’s physical abilities. It may be that hard reality – coupled with the fact that our boys can’t work to stop this disease, that we, their parents, their community, are driven to work so hard.
As I have often said at fund-raisers, our boys keep us up at night and they get us up in the morning. We create foundations, hold fundraisers and collaborate. We write letters, lobby the FDA, meet with scientists and try through it all to be the best parents we can be. It’s about our sons but it is contingent on us, the parents to find vibrancy and energy and excitement and the subsequent funding that will continue to move research forward. Our time is short. Gus is 14, we are in a race against time to challenge the nonsense world of duchenne with what seems an equally impossible premise – that we can beat time and save our boys. We will do it, and when we do, progress will mean progress for our children, goals will be possible and we all can dream of their full lives ahead.