I’m learning to accept that grief is part of my DMD caregiver journey

Last weekend, my husband and I cleaned out our storage unit. My husband loves that unit, while I feel like we need one so that we don’t accumulate too much stuff around the house.

We started renting it two years ago when we were hosting our oldest son’s high school graduation party in the garage. We cleared everything out of the garage, took it to the storage unit, and had a great party!

My husband convinced me to keep it another year for our second son’s graduation party, which we also hosted in the garage.

When we recently cleaned it, we found many unused items from the past two years. We sold or donated most of them and kept only what we needed for the garage.

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I’ll admit, the storage unit has grown on me, so we plan on keeping it indefinitely to store an extra wheelchair, an extra hospital bed, portable ramps, and seasonal things like the snowblower.

With seven children — Lexi, 24, Max, 19, Chance, 18, Rowen, 16, Charlie, 14, Mary, 11, and Callie, 3 — our large family needs more of everything, especially because Max, Rowen, and Charlie are living with Duchenne muscular dystrophy. I try to keep only what’s necessary to avoid clutter.

Letting it all out

Cleaning the storage unit led to clearing the garage and then the basement. Exhausted but satisfied, I expected to fall asleep quickly that night. Instead, my conscience also wanted to declutter. Memories and emotions resurfaced, leaving me restless as I confronted thoughts I’d been avoiding.

I started thinking about Rowen, a junior in high school who’d attended a small private school before transferring to a public school. Rowen is quiet and less involved in extracurricular activities than his brothers, spending most of his free time at home, which I support if it makes him happy. Still, I wonder if he’d be happier in a smaller school environment with his old friends. I grieved that he is no longer close to them.

However, what hurt my heart the most was that his old friends have grown, many of them taller than their parents and teachers. They are strong, and their once small frames now have broad shoulders and muscles that fill out their body.

I have tears in my eyes as I write this, because Rowen is close to the size he was four years ago and no longer walks. He struggles with almost everything. His friends have cars and curfews. They play sports and have social lives. Rowen depends on his dad and me.

It doesn’t seem fair, and it’s heartbreaking. With all of my might, I want to give Rowen everything he doesn’t have, but I can’t.

That night, I allowed myself to deeply grieve, letting in the sorrow I usually avoid. I don’t often allow myself to dwell on the hard parts and grieve. I’d rather ignore them and pretend that everything is fine. But the truth is, it’s not.

I needed that cry, but I was afraid it’d last into the next day. Yet when I woke up, I felt lighter. It was good to let go.

I’ve known all along that I need to let myself feel the hard parts of this disease. I often tell other parents that it’s OK to do that, just don’t allow yourself to live there. Obviously, that advice is easier to give than to practice myself.

I managed it, though. I let the emotions grab me and flow through me. It was uncomfortable and emotional, but it’s what I needed to be a mom and a caregiver who is capable of giving my all to my sons without falling apart.

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.