My Son Is Bigger Than His Duchenne Muscular Dystrophy Diagnosis

If you thought you missed my column last week, it wasn’t you — I didn’t write one. My kids were sick with cold symptoms. One thing you may not know about large families is that germs spread like wildfire, and the entire family gets whatever is going around. There are a lot of us in the family, so it takes days to recover.

That was the last 10 days for us. We kept sharing the germs until everyone had it. But we are finally back in working order. During that time, I exchanged emails with various teachers because my kids were missing their second week of school. The middle school teachers sent me homework for my youngest, Charlie, who is 11 and has Duchenne muscular dystrophy (DMD).

One of Charlie’s assignments was to write three paragraphs explaining to his new teacher what he wanted her to know about him. Because it was early in a new school year, Charlie needed some help getting started on the assignment, so we chatted about ideas. The first thing he wanted to write about was our pool in the backyard. He told his teacher how much he likes to swim.

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The second thing he shared was how big his family is, including how many siblings he has.

He was stuck on the last paragraph, though, so I suggested he write about his DMD. He said no, and after a little more thought, he decided he wanted to write about how much he likes to draw.

Whoa. That got me wondering: Why did I think DMD was one of the three things Charlie would want others to know?

I think Charlie is a beautiful soul. A jolt of joy. He tinkers and takes things apart and loves to tape them back together again. He has a mind full of trivia facts. He makes me laugh when he laughs. Charlie is a friend to everyone he meets. He loves to celebrate and is a foodie. He is happiness wrapped in boy. I’m crazy about him, and I want the world to see all of these things when they meet my boy.

I was upset with myself for suggesting he write about his DMD. While thinking about it, I realized that I’m afraid that when people first see Charlie, or my other two boys with DMD, Max and Rowen, they will see the chair, the gait, the disease, the Duchenne.

I’m afraid that when people see the disease first, it will change how they treat my sons. I’m not naive — I know that it sometimes does, and it breaks my heart. So naturally, I became a plow-horse mom. (I made that phrase up; think helicopter mom, but instead of hovering over the top, I’m out front trying to knock down obstacles.)

I strike first when Max, Rowen, and Charlie start a new school year, meet a new choir director, or try anything new. I email, I have meetings, and I make DMD cheat sheets. I do this because I love them, and I want people to know about Duchenne and how it makes the boys different, so that all their differences don’t make them left out. If I can go first and lay down a foundation of education, I hope the world will see past disease and notice how incredible my sons are.

But I learned something from Charlie when he didn’t feel it was essential to lead with an explanation of his disease. He shook me out of my plow-horse mom funk. Charlie is wonderful. The people who are going to mean the most will see Charlie for who he is, not the chair he’s sitting in. The right people in the right environment will see past his diagnosis.

Betty’s youngest son, Charlie, 11, has a knack for trivia. (Courtesy of Betty Vertin)

Duchenne is not the essential thing about Charlie. It is one little piece. I think what I do is important, but sometimes, I need to settle down with the advocacy, education, and front-running and ensure I’m celebrating all my son’s amazing pieces.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.