We Are In A Race Against Time...

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 hear 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.

Birthdays may be the most obvious example of this. We celebrate the fact that we’ve been blessed with another year with Trenten, and we mourn the fact that another of the too few precious years that Trenten will be alive has passed.

It’s as if my son is a perfect ice sculpture of himself and I desperately want to stop him from melting… I know, however, to complete the metaphor, that I can’t simply put my son on ice – he is a boy who wants to play in the sun. So I let him, and I find joy in his vibrancy and life.  Trenten is magic, like Frosty the Snowman. And like that mythical character, he won’t be held back. “And he said, let’s run and we’ll have some fun now before I melt away…” So I watch my son melt because I love them too much not to let him.

In the world of DMD, the words “conventional progress” make no sense.  In fact, when it comes to DMD, 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 Trenten's physical abilities.  It may be that hard reality – coupled with the fact that Trenten can’t work to stop this disease, that we, his parents, his community, are driven to work so hard.

But our time is short. At 12 years old, it is possible that my son has just 6 years.  We are in a race against time, time is not our friend, and I am scared we won't have enough time...

Until next time

~Jeri