Finding Hope Through the Seasons of Duchenne MD

The seasons are all special to me and necessary to one another. Each holds its own challenges and wonder. Here in Nebraska, we are fortunate enough to experience all four — winter, spring, summer, and fall. Every time I enter a new season, I think it’s my favorite, but by the time it comes to an end, I find myself looking toward the next.

Reflecting on the seasons reminds me of two Henry David Thoreau quotes:

“Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influence of the earth.”

“You must live in the present, launch yourself on every wave, find your eternity in each moment.”

I often think of Duchenne muscular dystrophy (DMD) in seasons. In my column last week, I wrote about my experience during the diagnosis season. It was hard to accept that three of my sons had Duchenne, and while it seemed to last forever, new seasons came.

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When the boys were little, other than large calf muscles and occasional stroller rides due to tired muscles, they were much like others their age. I knew what was gradually happening to those muscles they innocently used, pushing trucks in the sandbox. During those early days, I often grieved the things I feared my sons would never experience.

But looking back on those years, they were great, too. We found our tribe, the people and families that make up the Duchenne community. We found our support, the family and friends who stepped in and said, “We will be your legs so that you can be theirs.”

Two summers ago, when our middle son with Duchenne, Rowen, broke his leg, we started a new season. We had to learn how to be parents and caregivers to a nonambulatory child. We didn’t know what we were doing, and every day was an adventure.

That led to a season of calm. It’s only been 11 years since we were introduced to DMD, but I’ve learned that after a season of change, such as loss of ambulation, everything kind of settles until something new comes along. I’ve learned to embrace those seasons. It’s when life seems to happen for most for us — in those in-between times.

Living is the best part of life, even the Duchenne kind. As Thoreau said, we must live in each season as it passes. In the early seasons, we harvested so much joy from taking a year off regular school to home-school. We could just go and do and enjoy those days when the boys were less encumbered with muscle weakness.

I haven’t talked about anger yet, but I want to assure you that, at least for me, it’s a normal part of navigating the seasons of Duchenne. In my life, anger and sadness have appeared like a sudden rainstorm — the kind that pops up out of nowhere while you are outside enjoying a perfect summer day. Thankfully, it’s never been a prolonged thing; like a mosquito, it’s more of an irritant amid another season.

Over the weekend, my oldest son with DMD, Max, participated in an event honoring high school musical theater. It would’ve been a great, potentially once-in-a-lifetime activity for anyone, but it seemed even more so for Max. It was my perfect, sunny day. Mom-cruising on Facebook the next morning, I saw pictures of several of his castmates.

I was so happy for them, but at the same time, I felt a little angry that as they have physically progressed as performers over the years, it has only become more difficult for Max. He had to learn how to do everything in a new way when he began to need his wheelchair for performances, and even in just the past year, choreography involving his arms has become more difficult for him. His disease progression makes me angry!

But as summer rainstorms tend to do, my anger cleared up. I focused on what my son had accomplished, against all odds, and was also proud of his peers.

Perhaps I’m the only one who thinks of Duchenne in this way. However, I believe it has been beneficial to me over the years. Knowing that the seasons will continue to change has given me hope. It’s helped me weather the storms.

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.