The Duchenne Community Is My Safety Net When I Feel Lonely
I set aside time every week just for me. Every Monday for an hour, I sit in a small chapel at my church. I use the time to read, pray, reflect, or sit in silence.
This hour of power fuels my week.
I’m currently reading the book “The Return of the Prodigal Son: A Story of a Homecoming” by Henri J.M. Nouwen during my hour of power. I only read it once a week so I can take it in slowly and reflect on what I read. This week, I can’t stop thinking about the passages about loneliness. As a mom of three children with a rare disease, I have experienced this feeling.
In the book, Nouwen says that loneliness happens when you have nothing in common and share nothing with those around you. The idea resonates with me. I am one of very few people with three sons with Duchenne muscular dystrophy (DMD). I know of others, but they live very far away, and I rarely see them in person.
Instead, I spend time at my children’s schools, either in the bleachers watching my kids without Duchenne — Mary, Chance, and Lexi — play sports, or in the theater watching my oldest son with DMD, Max, perform.
The people I share these spaces with do not have children with DMD. We do not have lots in common. There is common ground, but we have different lives. Sometimes, seeing those differences up close makes me feel lonely.
These are good, well-meaning people. They ask about the boys and wish us well. But when they ask how the boys are doing, I end up saying, “As good as can be expected.”
Or yesterday, I heard myself say, “OK. No tragedies, just disease progression. But their hearts and lungs are good.”
What does that even mean?
It’s such an odd answer, but it was the best way to describe how the boys were right then. If a Duchenne mom asked me how the boys were, the conversation would be so different, and the two of us would be speaking the same language developed through our similar experiences.
My husband is the only Duchenne parent I spend lots of time with, and I am beyond thankful to have someone to share my journey with daily. But sometimes I feel lonely. I want mom friends with families that live Duchenne and also have typically developing children.
I start to feel the loneliness of being a mom of rare children set in, but then I remember I’m not alone. The community of people parenting children with DMD is active, vocal, and outstanding.
I don’t get to spend time with them in person very often, but at annual conferences I do, and I cherish those days. If my hours alone each week are my power hours, then the days spent with my Duchenne community are like the reset button that allows me to start again fresh.
There is also social media.
I know many things on social media are not good, and as a mom of teenagers, I am constantly monitoring what my kids have access to and their screen time. But some pieces of social media are refreshing, and for me, access to the Duchenne community is the best part.
Social media allows me to be in a virtual space with parents living Duchenne who get it. Parents who live in the moment and grieve a future that looks nothing like we thought it would. Parents who understand the exhaustion of clinic days, the heartbreak of watching our children grow weaker and more dependent while peers grow stronger and more independent — but knowing our children still have the capacity to celebrate the little, everyday victories.
I could go on and on about the things that parents in that virtual space understand. Sharing our experiences makes us all experts in our child’s health, and that makes every member so valuable to me.
At times, I wish I had a Duchenne mom in my living room to sip coffee with while we talk about our kids. I have times when I wallow and feel alone. But my people, the people I’ve met in person and online, have been a safety net. They have saved me from drowning in loneliness.
I am very thankful to be part of the Duchenne community. If loneliness comes from having nothing in common with those around you, then even having a condition like Duchenne makes you part of something, and when you are part of something, you are not alone.
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