Giving thanks that my 3 sons with DMD have one another

Summer vacation in the Midwest typically begins in mid-May, and kids return to school by mid-August. Here in Nebraska, that puts us halfway through summer break already.

Like most moms, I’m feeling a mix of emotions: grief as I anticipate the end of these few precious weeks home with my children, and slight relief to have a break from sibling arguments and nonstop streams of dirty dishes from snacks snuck from the kitchen and extra wet towels that have sopped up the footprints from our above-ground pool in the backyard down the hall to the bathroom.

In many ways, this summer has been like all of our others. We’ve swum, attended a lot of baseball and softball games, slept late, and eaten lots of ice cream. However, the differences between this summer and several of our past summers have been plenty.

I’m a mom to seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD). Life in general is busy at my house, and summer is no exception.

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This year, however, Max, Rowen, and Charlie have taken a more laid-back approach to their summer holiday, and I find myself with mixed emotions again. I appreciate the way they advocated for themselves to get it, given that my family had a very full year. Our oldest daughter got married, and within 12 months, our two oldest sons both graduated from high school. I also worked full time outside the home for the first time in over a decade. It was more than any of us had bargained for.

I know that I needed a reprieve, so I’m proud of my sons with DMD for voicing their need for one as well. They told me no to church, band (outside of what’s required, as Charlie will be in high school marching band), and the Muscular Dystrophy Association camp; they’ve also told me no to several of Chance’s baseball games. Max, Rowen, and Charlie, for the most part, are pleased to stay home out of the heat and do the things they enjoy, such as watching movies and playing video games.

I also feel sad that they’re not out there doing the things that Lexi and Chance did at their ages. Lexi played basketball, worked at a snow cone booth, and babysat, in addition to playing on a co-ed summer softball team. She was always spending time with friends and out of the house. Similarly, Chance plays baseball, works at a restaurant, and is often found at the golf course with his buddies or spending time with his girlfriend.

I want that for Max, Rowen, and Charlie. I want them to be busy with their friends and have girlfriends. I’d love it if they could play on a co-ed team or go golfing with the guys. I don’t grieve that as I used to, but I’d be lying if I told you that it didn’t creep up on me sometimes.

Those feelings never last long. Instead, I feel bountiful thanksgiving that my three beautiful sons have one another as they journey through the ugliness of Duchenne.

I was rushing through the house late last week. Mary had a softball tournament to prepare for, so she filled her water bottle and packed some snacks. Callie was tired and crying out for me. As I walked down the hallway outside Max’s bedroom, I could hear him, Rowen, and Charlie laughing together. In that moment, I praised God, thanking him for the gift that my three sons are to one another as brothers and friends.

Max, Rowen, and Charlie have social lives that look different from those of their siblings. However, they also have lives that look different from those living with Duchenne who don’t share the diagnosis with a sibling. No matter what my sons do, they do it together, and knowing that they have one another brings me peace and joy. I know they’re having a wonderful summer, doing what they’ve chosen to do, together.

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.