September 30 is Limb-Girdle Muscular Dystrophy Awareness Day. Now you’re aware.
Because we haven’t opened our son up for a muscle biopsy, a diagnosis of LGMD is merely a hypothesis. It’s consistent with his grandfather’s diagnosis, but its most frequently occurring subtypes–there are more than thirty–did not show up in a DNA screen when our son was first diagnosed. Limb-Girdle MD is the front-runner for official diagnosis. When we became a member of the MD “family,” (yes, quotes around family, because you know I wish my son had other relatives, like maybe MENSA or the MLB or any of the thousands of organizations NOT borne of medical necessity) I was very much in favor of medical testing in any or all of its forms.
I wanted to know the name of the bastard attacking my son. I wanted to look it in the eye, stare that monster down. I wanted to know everything so I could arm myself with data, facts, and the predictive information every mama bear needs to clutch to.
Instead, my husband dug in his heels. Dug in passively, anyway, he’s not so much the stand taker than I am. He did not want or need specific data points to be my kid’s dad. He plodded along, blissfully unaware (my phrase, not his), just being the same ol’ dad guy he’d always been. He did not support a surgical biopsy. The diagnosis would not change anything for our son, he believed, all it would do is provide a place to hang our hats. It’s not the only point on which we disagree(d), but elective surgery is kind of a big deal, and not a 50% kind of deal, you know?
Over time, together WE decided that if and when our son wanted a diagnosis, we’d support him in that, and by “support,” of course I mean pay for the procedure if that time falls when he’s still under our insurance. It’s a day surgery. We came to agreement that if our son got a point where his curiosity about his own health status or medical or treatment necessity came into play, the biopsy would serve its purpose then. For him.
My boy was eleven when diagnosed; it’s hard to believe he’ll be fifteen in a few weeks. So much has changed, but not his diagnosis.
Today is LGMD Awareness Day. Click here to learn about LGMD, to heighten your awareness, as it were. It seemed absurd to me that an awareness day was a thing back in what I now think of as my “early days” of the MD ride. But as I find myself staring down high school physical education class with abject terror for my son, I would love for his gym teacher to be aware, you bet your booty.
My niece is running the Chicago Marathon next Sunday, a member of Team Momentum, the Muscular Dystrophy Association‘s fund raising and awareness squad. Y’all, the girl is running a marathon for my boy, for her camper, for her grandfather. She’s a remarkable young woman, whose bravery and commitment brings me to tears every time I think about it. Go, Lauren! We love you. Aaaaand, yeah, I’ve got the tears. . .