Fear and pride as my son starts up with high school band

When I think about my son Charlie, I always remember my pregnancy with him. I’d taken a home test and knew I was pregnant, but when I called to make an appointment with my doctor to confirm the good news, I scheduled an appointment for my son Max, who was 4, at the same time. Our family doctor had received a note from Max’s physical therapist and wanted to discuss it with us.

The physical therapist’s note led to a diagnosis of Duchenne muscular dystrophy (DMD) not just for Max, but ultimately for his brothers Rowen and Charlie, too. However, Rowen’s and Charlie’s diagnoses came after my pregnancy with Charlie.

When we learned Max had DMD, I was distraught. I cried for days; sometimes I didn’t want to get out of bed. I was caught off guard that something was wrong with my son, and for months, the sound of the doctor’s voice was on repeat in my head, telling me there was no cure and that someday DMD would cause his death.

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I often tell people that the only thing keeping me afloat during that time was my pregnancy. I decided to wait until the baby was born before testing our other children. Charlie was my light at the end of a dark tunnel. Babies bring joy. My anticipation to meet the son I was carrying was a gift, a hope that was new again each morning.

Charlie has always been a joy; even before I could feel him moving in my swollen belly, months before I could see him or hold him, he brought joy. And I was desperate for it. Without it, I fear I could have drowned in my grief over Max’s diagnosis.

I’m a mother to seven now: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. However, there was a time after Charlie was born and three of my four boys were diagnosed that I never thought we’d have more children. Charlie was my baby. Even after our youngest two girls came, I still thought of Charlie as one of my littles, and he’ll always be my baby boy.

Monday morning, as I dropped him off on his first day of high school band camp, those thoughts caught in my throat as I tried to fight back tears and the desire to go back and get him.

My son’s step forward

He’s my baby, much to his disdain. I can’t fight that feeling. I was scared to drop him off for band camp. He’s little; he’ll be the smallest freshman in his class. He uses a wheelchair; he’ll be the only one at camp to have one. Charlie is my first child to be in band, and I don’t even know what I’m supposed to prepare him for or protect him from.

I was freaking out. I kept waking up the night before the first day, too anxious to sleep. I didn’t want the camp to be too hard; I didn’t want the band director or upperclassmen to be demanding and expect things from Charlie that he wouldn’t be physically capable of doing. I didn’t want Charlie to experience failure. I wanted him to be a joyful toddler again, tucked away in the safe confines of our home.

But that’s not what Charlie wants; he wants to be out in the world, doing his thing and making his mark. Deep down, that’s what I want for him, too, and that’s what my husband, Jason, and I have raised him to be. We just know that marching band will be challenging.

As I drove home on Monday after leaving him at high school for the first time, wiping away the smattering of tears that were making their way down my cheek, I was as proud as I was anxious and scared.

I was proud of Charlie for doing something he was fully aware would be challenging. But Charlie wasn’t scared; he was calm, cool, and collected. His confidence is what told me it was OK to leave him at camp.

I know this step is just the first on our journey with the high school marching band, but at the end of that first day, Charlie was tired but happy.

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.