were the first words my younger son asked me when I told him about his big brother’s diagnosis. You get about 2.3 seconds to process the question, freak out in your head and heart, and formulate a response. You send every good intention up and out to anyone, anything who might have an ear, and plead with the universe that you get this right. It went something like this:
Yes, he is. We all are going to die eventually, but he’s not going to die from MD today. Or tomorrow. And probably not for a very long time. We’re not sure how this is going to affect your brother, and that’s really all we know right now.
There may be times when your brother moves more slowly and there will be things that will be harder for him to do. He might have some pain sometimes.
Like growing pains?
Maybe, but not exactly like. And they won’t stop even when he’s done growing.
Which will be like when we’re in college.
Yep. Probably by the time you graduate college, you’ll be full-grown. I don’t have a whole lot of answers about this disease yet. Your brother goes for more tests in a couple months.
Will he be in a wheelchair?
Don’t know that either. Maybe. Hopefully not for a very long time. But there is no way to predict just yet. I wish I knew more. Do you have any other questions?
No, not really.
Exhale. Wipe your eyes. Inhale. Wipe your eyes again. You realize that this disease hasn’t hit only one of your children.