How much of an emotional toll does DMD take on me as a mother?

How does Duchenne muscular dystrophy (DMD) affect me as a mom? Am I numb? Have I accepted it? Has DMD killed a piece of my heart? Will it keep taking parts of me?

These questions have been weighing on my heart, but it’s been hard to put them into words.

I have three sons with DMD. My oldest, Max, 18, stopped walking last February after he fell and broke his leg. I was distraught. I cried openly in front of people I didn’t know well. I was angry with specialists who weren’t telling me what I wanted to hear. I was irrational, at best.

My middle son with DMD, Rowen, 14, lost ambulation in May of 2020, when he fell and broke his leg. He’d been growing weaker for months and was my first son to stop walking. We had a power wheelchair, but he was still walking as much as he could — as if he knew his days were limited and he wasn’t ready to give up.

During that time, I was constantly afraid Rowen would fall. Because I was being irrational and living in fear, I lost friendships. It also was a challenging year for my marriage. I was grieving something that hadn’t even happened yet, and I was as miserable toward others as I felt on the inside. No manual tells you how to handle the emotional toll of your child losing the ability to walk — or worse, the fear that loss of ambulation will lead to death even faster.

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My youngest son, Charlie, is 12, and walking makes him tired. He got his first power chair a few weeks ago and wants to use it. He was already taking fewer steps, and now he’s going off his feet. I see it, it’s coming, but I can’t feel it. It’s like I’m watching a horror film, and when everyone else in the theater jumps at the scary part, I sit there unfazed. Why am I not completely freaking out, as I did with Max and Rowen?

Maybe I’ve learned to enjoy our time, or I’m ignoring the fact that Charlie is losing the ability to walk. Perhaps I’m afraid of how hard it’ll be to care for three nonambulatory teenagers with Duchenne, so I’m just not accepting it. Or maybe Duchenne is so horrible that it’s started to kill off pieces of my heart.

Am I losing pieces of myself?

Life was so hard after my sons were diagnosed with DMD. We had to find a new way to live with strollers and doctor appointments, and I spent hours on research, grief, and fear of the unknown. What I didn’t know then was how hard I’d have to work once the disease did all the things to my boys I was afraid it would do. I didn’t realize how much of an emotional toll it’d take on my spirit to try to slow or stop disease progression, only to see it continue.

My sons need me for everything. When Rowen stopped walking, we had to learn overnight how to care for a nonambulatory child. Now I know, but when Charlie stops walking, the challenges will be multiplied again. I’m tired, but that’s not everything.

I no longer have a social life. I have so much to do at home, and I’ve said no to activities so often that no one invites me anymore. I’m introverted to begin with, but add exhaustion, fear, and stress to the mix, and I’m isolated. As thankful as I am for online interactions with other DMD moms, those are all I have. Ultimately, not having a social life works out because I lack time and energy for it. As a mother, I desire to pour all of myself into my family.

I know the scientific Duchenne community has recently begun to study the mothers through caregiver surveys and interviews. Those who are carriers like me may complete MRIs and other tests to learn more about how DMD manifests in us. But how do we measure the emotional toll? Will there be anything left of me once the journey with DMD is complete?

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 or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.