The Challenge of Dealing With Grief as a Mother to Children With DMD

Duchenne muscular dystrophy (DMD) is a progressive disease, but for me, the mother of three sons with DMD, things have been more nuanced. The grief I experience from being associated with a rare, chronic disease has been anticipatory, erratic, and constantly cyclical. It did not start small and grow as the condition progressed in my sons, but rather was prominent from the get-go.

Over the years, I’ve learned to constantly live with grief. I often ignore it, sometimes accept it, and occasionally dive right into it to feel the feelings and move on in a healing direction.

I once wrote a blog post titled “Grief is Not Stable.” While that was a few years ago, many of the sentiments are the same today. As I’ve recently shared, my oldest son with Duchenne, 16-year-old Max, is not stable, either. His heart and lungs are doing well, but his strength and function are rapidly changing.

I notice the changes, and he, his dad, Jason, and I are learning new ways to do things. Jason and I are also learning how to better help Max. But until recently, I had been ignoring the grief that was gnawing away at me. Then I went away for a couple of days of respite, and in that quiet space, it hit me.

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Growing more fragile

At times like this, I wonder if having three sons with DMD is a good thing because I’ve been through this before and I have experience. I walked with my younger son, Rowen, 13, during his final steps, for example, and helped him transition full time into a wheelchair. Or is it actually harder to have three sons with DMD because I’ve already helped one son off his feet, and to do so again, and possibly a third time, will repeatedly break my heart?

Max is different from Rowen, who was always weaker and found walking exhausting. Rowen eventually fell and broke his leg, permanently ending his ability to walk. Rowen is a bigger guy, and aside from weak bones caused by years of corticosteroid use, he is hardy. I use my strength when I lift or transfer him, and we laugh and joke while helping him. It feels normal.

However, it seems like Max is growing more fragile as he weakens. As of a couple months ago, he is no longer able to get up from a seated position on his own. He calls for help, but I have to lift him slowly and carefully, because holding on to him in the wrong place or going too fast causes him pain. And although he has gained some weight this year, he seems smaller, as if there were less of him.

It feels like Duchenne is taking more than just his strength, and that makes me feel so sad.

Max is OK with it. He loves theater and music and is involved in both at his high school. However, the choreography and physical demands are changing his level of involvement. He loves show choir, for example, but the choreography has always been too strenuous. Instead, he is learning to do lights and sound and is the student manager. He loves his new role, but I’m over here grieving. I love his involvement and excitement, too, but I wish he could dance.

Sometimes I see Max struggle with grief, but he has been great at finding ways to replace what he has lost due to the disease’s progression. I need to work on embracing that. But the constant, slight loss of ability makes me think ahead. When I do, I not only grieve the loss he is experiencing, but also the future ones, and the eventual loss of my son. I’m so afraid to imagine life without him that I put it out of my mind and do my best to stay in the present moment.

Duchenne is a progression of losses. Grief is ever-present, and as the mom of three boys with Duchenne, it is hard for me to deal with.

Note: Muscular Dystrophy News 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.