Let’s face it. Life with Duchenne Muscular Dystrophy (or DMD for short) is tough. Now imagine that you live in a world outside building codes and handicap accessibility. I mean we still have them but just in town (and our hometown is small).
Life on a farm is like that. We don’t have tall buildings and paved streets. We have gravel, big equipment and lots of chores. Outside and inside chores. Lots of places that make it very hard for a boy with DMD to navigate.
DMD is a progressive muscular disorder that is 100% fatal. It affects mostly boys and there is no cure for it. Pretty hard and depressing facts, huh?
Breaking it down even further than that simplified version is this. DMD is progressive. That means it will never get better but will continue to get worse.
Duchenne’s is a muscular disorder. The first noticeable affected muscles are the legs and the upper arms/shoulders. Eventually all muscles will be affected.
Because all muscles eventually become affected, DMD is 100% fatal. There is currently no cure. In fact, treatment for DMD is limited. This is part of the reason that awareness is necessary. The more awareness raised, the better the opportunity for finding a cure.
Cade’s symptoms are constant. They don’t go away. He doesn’t have flare ups. It’s just always there. He doesn’t wake up after a great night’s sleep and have “fresh” muscles. He wakes up every morning with his muscles beginning the day like he already had a 2 hour work out.
This is why we focus on energy conservation. Anyway that we can manage to space things out for Cade, we do. Our everyday life doesn’t always allow for that however. When you are dependent upon the weather and plants and animals, your time schedule is not always an option.
So we do the best we can and realize that some days are going to be hard. Like I do not have the energy to deal with the meltdown that is about to take place, but have to. I also have to remember that when I think it is hard and I have no energy left, Cade really doesn’t.
Cade’s body uses a ton of his energy just to perform everyday functions like breathing and movements. He doesn’t always have the energy necessary to stop the BIG emotions that are about to come out of him. Does that mean that he gets away with bad behavior? No. But my response needs to take into account his energy levels.
This is HARD, but I know that by God’s grace, I will try my best.
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