Diagnosis

I was just looking back through these posts and realized that I had posted a few years ago about how I feared once Seth started school he would notice how much behind he was other kids, or hopefully start to catch up. Well he didn't, and now we finally know why-he has Duchenne's muscular dystrophy. Even typing that seems so weird...I know it's true (I guess nothing is written in stone till the bloodwork comes back but it's a pretty classic case) but I just can't wrap my brain around it. I suppose that's not something that happens overnight.

It just seems so unreal because I honestly didn't even have a clue. We brought him to an orthopedic specialist last week Thursday because he was just still so stiff and still not up to speed. She wanted to do a blood test to rule out MD-I read her dictation from the visit and she honestly was leaning toward cerebral palsy-both of which were surprising to us since we just thought he had stiff muscles, you know? So when his bloodwork came back and showed pretty definitely it was MD, it was a total shock. I did what people do in the computer age-I googled my ass off and it all kept coming back to Duchenne's-the most common and I think the most debilitating with the shortest life expectancy. I didn't want to believe it, but I knew it was true.

So anyway, then we went to the neurologist-she wasn't there at first so the NP was doing all the stuff they need to do and as the visit progressed I could see her face getting more and more serious and the dread in the pit of my stomach just got deeper and deeper. Then the neurologist came (she had been on call at the hospital) and all of a sudden there are three medical professionals in the room, all sitting there with these grave looks on their faces. So in the space of about a week we went from thinking that he just had some muscle stiffness to knowing that he has this horrible disease that is going to kill him. Not tomorrow, but someday, and along the way we will have to watch him slowly deteriorate. How do you even begin to deal with that?

I was just thinking today that as mothers we do so much to protect our kids. We strap them into their five point harnesses, slather them with sunscreen, make them wear bike helmets, try to get them to eat some decent food, etc. But what do you do when it's his own body that is the thing that is going to do him the most harm?