In choosing a college, my son with DMD is already winning

I am a competitive former college athlete married to a someone who is equally competitive and also was a college athlete. We like to win and try to position ourselves in ways to make it possible. However, when three of our sons, Max, 18, Rowen, 15, and Charlie, 13, were diagnosed with Duchenne muscular dystrophy (DMD), we encountered an opponent that often makes winning feel impossible.

Despite the diagnosis, our competitive nature has remained strong. Our oldest daughter, Lexi, 22, was a star high school athlete in three sports who went on to compete at the highest collegiate level for track and field. Our son who doesn’t have DMD, Chance, 16, is also a great athlete and likely will play baseball in college.

So, even though we have three sons with DMD, our world involves competition.

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Max, our oldest son with DMD, grew up in the bleachers at his sister’s various sporting events. And in his own way, he has found a way to compete. Last year, during his junior year of high school, Max joined the show choir. Duchenne has made it impossible to handle the dancing and choreography, but he can run the lights.

My husband, Jason, and I had never heard of show choir, much less attended a competition. And whoa, are they fun! They are intense and make you want to win.

The first time I attended a competition, I watched Max’s choir and thought they would win. I knew little about show choir requirements and what it takes to succeed, and boy was I wrong. The choir didn’t even make the finals. However, they improved each week and placed third in their final competition last year. This year, they finished first, second, and third in their competitions.

Jason and I hoot and holler, similar to when we are at football or basketball games. We are happy that Max has that, and we put it in the win column over Duchenne.

A tough choice to make

Now that Max is a senior, he is deciding what to do next year but knows it will involve college. He must decide whether to go to a school 90 miles away and live on campus or attend a college in our hometown.

As we go through this process together, I find my competitive self trying to get another win over DMD.

For months, I’ve been pushing for the out-of-town college. It’s probably Max’s best fit, and the campus is incredibly welcoming. College administrators repeatedly followed up and told Max they wanted him to attend there.

Max loves all of those things about the college, too, but he also knows himself well and has a valid concern that his anxiety would make it challenging for him to experience so much change, including learning to depend on other caregivers while being a typical freshman navigating the college experience.

I have continued to push him to consider the out-of-town school. I don’t want him to rule it out because of Duchenne. I don’t mind if he rules it out for any other reason, but not that one.

The reality is that Duchenne and anxiety will make his experience challenging. I’m having a hard time accepting that. I want to win this one. I want to be one of the moms who posts on social media next fall with the hashtag #NotTodayDuchenne because Duchenne didn’t stop him.

But after much thought, I realized that Max doesn’t need to go away to college to win. I had to reframe what winning is with DMD. Winning is a son with stable health who is involved in his school community. It is an 18-year-old son with DMD who can go to college. Winning is that the school at home offered him an excellent scholarship in acting — where he would be the first student in a power wheelchair to attend and perform in their theater program. Winning means Max is happy and loved.

Note: Muscular Dystrophy News Today 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 Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.