A Rare Opportunity
It’s easy to feel unlucky when your child is diagnosed with a rare disease like Duchenne. Out of 3,500-5,000 families (depends who you ask), ours was the one it found, the one called to conquer this climb. I sometimes imagine Charlie’s gene coming together, broken where it should be whole, and wonder at the randomness of it all. “Why Charlie?” is a natural question, though I try not to allow it to unpack and stay a while when it shows up.
I’m not one to believe that everything is preordained, that Charlie’s diagnosis was fate, nor do I think God wanted Charlie to have Duchenne any more than we did. But I do believe that good often emerges from really hard things, in a way that can make the circumstance feel meant to be. Something sad, hard and scary can come with the rare opportunity to feel held up by the humanity that surrounds you. How many times in life do you have a chance to experience the grace of people, those you know and others you don’t, willing to do whatever they can to take some sliver of the burden off your back, mobilized all at once? I suppose you can count yourself lucky if you don’t ever need that, but if you do, it feels assuredly fortunate.
Just months into this fight, our catalogue of graceful moments is many pages long. There are the besties who showed up just after diagnosis and sat with me in my backyard, helping a desperate mama feel like she could breathe a minute, laugh even. There’s the incredible rector at our church who has checked in with inspired words. The friend who ran 18 miles for Charlie and the outpouring of early support that yielded from the community. Business partners who have joined the fight with me and helped share our story (here and here today). The walks, the calls, the texts, connections made, offers of help put permanently on the table. How about the editor of the local newspaper who not only helped us share Charlie’s story but chose to put it on the front page for maximum awareness? The photographer who captured our Charlie boy and our family so beautifully—and offered to do that for free? Family members who have made this their cause, too, and every single one of our Charlie’s Cure contributors (thank you!)—it all keeps us strong for Charlie.
Another mom in this disease community (who, it must be said, had me in tears with laughter, an instant friendship-maker) started our recent conversation by saying, “I’m sorry to meet you,” and now I’ve adopted it, too. None of us wants to be in this awful club—the food’s always cold and the service is terrible. But there’s nothing like being in a trench together, and the relationships I’ve already built offer an unexpected gift. Whatever strength our boys lack has somehow been ignited in multitudes within us, and I am so relieved to find the take-no-prisoners people I need to fight with me, side-by-side. That’s pretty lucky, if you ask me.