The brothers of Duchenne: Watching my son begin to understand what DMD will mean

“What am I going to do when Matthew is in a wheelchair?”

There was desperation and fear dripping from these words. His eyes were brimming with tears and I knew that he was experiencing the sense of loss that I had experienced 5 years ago when Matthew was diagnosed.  

My son, Owen, is 9. He is old enough to grasp the difficulties that Duchenne brings, but young enough to process it in very selfish terms. He saw how the changes in his brother’s abilities were going to affect him. He cried as he mourned not being able to wrestle on the floor with his brother, the days when they would no longer chase each other, taunt each other and behave in the rough way that brothers do.  He got a glimpse into the future and it horrified him.  

I remember that feeling.

When Owen, Bobby and I talked about it, we did not sugar coat the effects of Duchenne, but did stress the honest hope that we feel. When we talked about the research, he perked up and said, “I bet those doctors can figure this out.”  I told them that I was sure that they would, but it takes time and a lot of teamwork.  

We talked about the race (www.parentprojectmd.org/milesformatthew) and he said that was one fun thing that has come out of Matthew having Duchenne. I cherish this response because I always want my children to see the glass half full. Finding something good in every situation is so powerful and it keeps us strong.

Duchenne does not just disable its victim; it disables and disarms all who love him. There is, however, some relief in sharing this burden with our son, however painful it is. It is not a secret, it is not unspeakable, and it is not taboo. It is part of what defines and drives our family and we embrace it in the sense that we all must own it. 

Nine-year-old boys are not often known for their empathy. This moment of pause, reflection and emotional outpouring was truly beautiful, to be treasured, because it is the greatest show of love and concern that a person of that age can give. 

So here is the glass half full: In a moment of painful realization came a connection between parents and child and a new outlook on family for our son. I believe Owen grew up a little last night. This is a gift to cherish.

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, a wife and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy.