My sons with Duchenne are each other’s best friends, and that’s OK
I have long worried about my boys' social lives, but am trying not to
Moms worry about their children. As a mother of seven — Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 11; and Callie, 3 — I know firsthand what it’s like to be anxious and concerned about kids.
My children’s ages span 20 years — another thing to worry about. Some are navigating adulthood while one is starting preschool, making my concerns wide-ranging ones. For me, the most anxiety-inducing part about being a mother is that my sons Max, Rowen, and Charlie all live with Duchenne muscular dystrophy.
Duchenne brings constant worry into my life. I stress daily about its effects on my boys — their heart health, lung health, life expectancy, insurance, equipment, accessibility, and mobility.
I worry about the boys’ social lives
I also stress about their social lives. I worry about my sons having friends and hanging out.
When Max, Rowen, and Charlie were little, despite struggling with their large motor skills, they still resembled their peers. They walked and could manage a couple of steps to get into someone’s house without needing a ramp. They were often invited to birthday parties and to hang out or have a sleepover. They went to the movies with their friends, and Max even played paintball once.
Invitations to social events nearly stopped around the time they transitioned into wheelchairs, however, except for the occasional school dance. While they participate in extracurricular activities and interact with their peers, they don’t have many close friends. I worry about that. I want them to have their own people and to make memories with other young people.
Max has struggled with anxiety for years. I’ve encouraged him to talk to his classmates, ask someone to hang out, or go to a movie. Last year, he was at college during the Super Bowl and remained in his dorm room while a group of students watched the game in the lobby close by.
‘I have my brothers’
A few weeks ago, Max and I sat in a hospital waiting room as one of his brothers finished an appointment. Suddenly, he said, “Mom, I know you want me to have more friends, but I don’t really need any because I have my brothers.”
I didn’t know what to say. Max, Rowen, and Charlie do share a rare bond and I feel deep gratitude that they have each other. Facing challenges together eases any sense of isolation they might experience.
Rowen and Charlie haven’t said anything about this, but I can see it. Homecoming was last week and Rowen didn’t want to go. He had tried it the previous year and found it wasn’t for him — too loud and overstimulating — and he called us to take him home early. But Charlie wanted to try to go this year. However, on the day of the dance, he was in a parade with the marching band. It was hot and long, and by the time he got home, he no longer wanted to attend the dance. He told me, “It will be more fun to stay home and watch wrestling with Max and Rowen.”
The boys know I worry about them. When I told them that’s what I was writing about this week, they nodded.
As I recall what Max told me in the waiting room and Charlie’s decision to stay home during homecoming, I realize my focus needs to shift. Rather than worrying about my sons’ social lives, I should appreciate the strong bond they share with each other. Despite their challenges with Duchenne, they have found a close friendship and support in each other. That’s something I deeply cherish.
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.
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