Why I’m Thankful for the Power of the Duchenne Community
It makes such a difference to have connections with people who 'get it'
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There is power in community! I’m thankful that my family is part of a big, beautiful community: the parents, professionals, and, of course, those living with Duchenne muscular dystrophy (DMD). They are, in my opinion, the best!
When my three sons — Max, Rowen, and Charlie, ages 16, 13, and 11 — were diagnosed with DMD over a decade ago, I felt utterly alone until I connected with the Duchenne community. Once that happened, I became part of something bigger than myself, bigger than my family. We were connected and immediately began to draw strength from those living similar versions of our life with Duchenne.
It’s a large community spanning the world. Of course, differences exist, but we are united by one cause. As a history buff, it reminds me of old World War I and II movies I’ve seen, in which soldiers from all different parts of the country, with diverse backgrounds and many other differences, live and fight together as one army in the trenches.
I feel like we’re together in the trenches in the DMD community. Our politics and religious beliefs are different. Our interests and hobbies are not the same. But we are united by our own or our family member’s disease. And when we battle, whether it be a health crisis, insurance denials, or other illness-related problems, we have one another’s backs.
That kind of unity creates a feeling of safety. I’m an open book: I publicly share my family’s journey with Duchenne by writing a column for all the world to read. That said, I’d only want to share some things about my life as a caregiver/parent with other caregivers/parents because I know they’ll get it. I don’t know a better way to explain it than that. It’s just good to be around people who get it.
They understand how life-changing the diagnosis process is, and how our boys going off their feet and needing assistance isn’t the end of the world — but all the changes the transition brings make it feel like it’s going to be. They understand precisely when you talk about frustrations, hard cries, and difficult conversations. I could list many other things, but I think you know what I’m saying. They get it because they’ve lived it.
The community is refreshing. When I share within the community, I feel listened to and understood. Community members answer with advice, laughter, hugs, communal tears, and more. I need that. I’m looking ahead to next week when I will travel to Vermont to be with community members for just that reason: to refresh. I need to recharge and be with people who get it for me to be my children’s best caregiver/parent.
Another aspect of the Duchenne community that demonstrates its strength is that many of us have never met in person. The connection is made possible by social media and other online sources, like the forums Muscular Dystrophy News makes available. It’s not like we become best friends with everyone we meet, but I, for one, have met my people, the ones with whom it just clicked.
This week, I’ve seen the power in this as I follow one of the people I’ve found in the community. She has a very sick son. I find myself hanging on to my phone, waiting for progress updates, and sharing them with my family. I have prayed for that family and let my tears join theirs. I hurt for and with them.
The Duchenne community shows up when one of us is in crisis. I’m witnessing my friend as she’s experiencing that this week. Visits, gifts, prayers, and so much love have met her during this crisis.
There is healing power in community. I’m thankful to be a member of the Duchenne community because I need to pull from its strength, and I need its support. And I’m proud to be part of the community, as well.
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.
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