“I wish I didn’t have special muscles,” Brendan said to me as I struggled to pull both him and his younger brother through the Farmers Market, with those damn wheels that don’t turn. “I can’t run like Owen can. I can’t jump off things or climb things either. I wish I didn’t have special muscles, Dad.” Maybe he has been putting things together for some time now and after seeing Owen for a few weeks at gymnastics club, all the people walking past him while he was in the wagon finally drove it home. He also had the C.A.R.E. Day event last week for kids with special abilities. Whatever the factors, this was the first time he ever said this and it has been with me for days.
Buddy, I wish you didn’t have special muscles, either. I wish this wasn’t the hand you were dealt. You didn’t ask for this and neither did we. I know I said right away that it’s true, you can’t do all those things… but there is so much you can do. Reading, playing board games, your art, your singing. We can do these things together, and it’s true, you are so good at these things… but truthfully, I haven’t figured out how to give you what you need and give Owen what he needs at the same time. I’m trying to figure this all out, too. How can I be the Dad you need?
I think I might have said to you that sometimes we have things that make life more difficult and we just have to work with what we’ve got. Sometimes, we are given really really shitty luck. This won’t be the only difficult thing you have to deal with. I wish I could see it all as a gift. I say I see everything as a gift, but some gifts I want to give back, that’s for sure… and your DMD is definitely one I would return if I could.
I don’t know what goes on in your little (or big…) mind. Your brother, either. This has to be so hard for you guys to navigate and some days, when I have enough compassion, I can recognize your tantrums, screaming, breaking things, and aggression as a cry for help. You don’t have the years of getting through tough stuff to know that there is more to life than this. This IS your life. It’s your whole life, and I’m sure there are many times you just don’t know what to do with it. Well, I’m lucky I get to go through it with you. I’m lucky I get to be the one to hold your hand when you cross the street so you don’t trip and fall in front of traffic. I’m lucky to be able to help you get your pants on or to lift you into and out of the car every time. I am lucky to pull you to school in your wagon, to play board games with you, and to take you fishing even though you get tired after holding the pole for five minutes. Our futures are tied together for the time being and I’m glad for that. God goes with us, the land will hold us up, and whatever life we have and receive together can be full and abundant with joy and love.
Yesterday, when we were late for school, I told you that we were not likely going to beat your buddy, Oscar, to the classroom. “It’s okay, Dad,” you said. “We don’t have to beat Oscar every day. Sometimes it’s okay to go slow.” Wow… I don’t know that you knew all you were saying in that, but it’s true, buddy. You can go slow, and often you will see more when you do. And I’ll be there to go slow with you.