I spent way too much time trying to find the actual statistic. Let’s just say it’s rare enough and so specific that no one knows. So let’s go with 1 in 200,000. Let’s say that this is so rare that you probably don’t know anyone else with it. Rare, but for us real. For us it is no longer uncommon. When we found out there were only 263 registered cases in the world, it did not lessen the magnitude of shock in our home.
Our daughter is so much more than her diagnosis. But because of her diagnosis, life is made sweeter. Every small, but giant, step we take together is measured by not the length of the step or the time it took to get there; but rather that it is even happening at all.
Merosin Deficient Muscular Dystrophy.
Phew, the four word cuss word.
MDC1A. CMD. LAMA2.
What does it mean? It means Elliot’s successes are just that more precious and meaningful. It means that she requires us to see the joy in odd nooks and crannies. She has allowed us the privilege of slowing down to join her in her world through her perspective.
The nitty gritty: It means that she will have to work harder, try longer, and be braver than anyone I know. And I get to be her mom for that. I GET TO. I am allowed the honor of doing life with her.
Some day she may read this. And what I want her to know that to me, she is undefinable. To me she is immeasurable, unstatistic-able, she is rare because she is wonderful. She is 1 in 1,000,000. She is ours. And that is all I need to know.