Alan Heiber

On the closing day of the 2022 CureDuchenne FUTURES Conference, I took in a session called “Community of Caregivers.” The speakers were mothers of children and an adult with Duchenne muscular dystrophy (DMD). A theme that caught my eye was how each family has gone through a variety of peaks and valleys when facing the unique challenges the disease can present.

I enjoyed all of the speakers, but Marissa Penrod’s presentation resonated most with my experience. She is the mother of 19-year-old Joseph, who is currently a student at Michigan State. Additionally, she is the cofounder of a nonprofit in her son’s name called Team Joseph and hosts a podcast titled “Making Our Way,” where she interviews individuals with a connection to DMD.

Penrod gave an account of when she received the news of her son’s diagnosis. She talked about how there was a sense of devastation when first hearing this. In my experience, I’ve witnessed a few moments when I could tell one of my parents was distressed at a noticeable level.

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My mother recently shared a notebook with me that had several entries in it from 2005, when I was in the process of getting spinal surgery and recovering afterward. When she heard the news that I should have the procedure, it sent her into what was probably a panic attack. Post-surgery, I was getting an X-ray done, and I was obviously in discomfort. This was again an upsetting event for my mom to observe.

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A number of years ago my father went to a conference similar to this one hosted by the Duchenne Parent Project. He recalls a session by a researcher when there was an apparent tension in the room because some families had only recently gotten a diagnosis and were hoping the speaker would have more extensive treatments to discuss.

Penrod told a more hopeful story about a time when her son was younger, and they were visiting relatives. They were walking to get ice cream somewhere, and Joseph was going at a steady pace. He then pointed out to his mother a ladybug that grabbed his attention. She used this anecdote to demonstrate how caring for someone with DMD might mean doing things in life at a slower speed but that this can provide opportunities to maybe cherish it a little more.

The above story makes me think of how small moments of joy with my parents are priceless for us to collectively lighten hardships that might be weighing on our minds. On a typical evening, we watch an episode of a television show or movie. I find this gives each of us something to look forward to every day, even on some particularly stressful ones. It might seem like a minuscule thing, but this routine can move waves for us.

Below are some words from my mother on how she is able to cope when facing bumps in the road brought on by DMD.

“We all have a struggle in this life, and it’s how we deal with it that makes all the difference. I make a conscious decision to focus on the positives and work through the negatives with a lot of communication,” she said. “Supporting each other, being honest with each other, valuing our time here, and making the most of it will get us through.”

My father: “My son’s needs have increased over the years. For example, he came to the realization that he’d have to use a wheelchair. This was upsetting for both of us. As a parent though, I reassured him it was OK and didn’t overshare my own fears.”

Penrod concluded by saying how we live with the cards we’ve been dealt in life makes all the difference. I feel that my parents are a model example of this notion.