I Carry Duchenne Muscular Dystrophy, Which Was Hard to Accept
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I think all moms need strong shoulders and extra arms. We carry purses, diaper bags, backpacks, and discarded jackets. Duchenne moms carry more, including sometimes our kids and their equipment, although I’ll admit that power wheelchairs are great for carrying bags without tipping over, unlike manual chairs and strollers.
However, when I talk about the things I carry, I’m also talking about the things no one else can see. I carry Duchenne muscular dystrophy.
I found out I was a carrier of a genetic mutation that causes the disease when my youngest son, Charlie, was diagnosed with Duchenne. Doctors confirmed my carrier status then, but it was suspected as soon as my second son, Rowen, was diagnosed before that. We waited to test my carrier status until Charlie was born, because I was pregnant with him when we first learned that Duchenne would be part of our family’s future.
Knowing that I was a carrier and passed the disease to my sons was a hard truth for me to accept. I know that knowledge is power, but this piece of knowledge felt like a blow that took out my knees, knocked me to the ground, and took my breath away.
I remember days of darkness spent in bed crying. It felt like a death or a prison sentence, like my life was over and all I could do was grieve. It took me a couple years — yes, years — to come to terms with it. I felt guilty, as if being a carrier was my fault. I know it wasn’t, though, and there was nothing I could have done to change that.
However, while I felt guilty, not every carrier will feel the same. There is no right or wrong way to feel about it. Everyone needs to process it on their own and reach their own conclusions.
Of course, if given the choice, I wouldn’t have chosen to be a carrier of a fatal, muscle-wasting disease. But I didn’t have a choice, and it is part of me. But I’ve learned over the years that it is only one part of me, just as Duchenne is only one part of my boys’ identities.
Life with Duchenne is not horrible, as I had feared it would be. At the beginning of this journey, the only thing I could imagine was a slow and painful future for my sons and, therefore, me. I couldn’t imagine a life of watching my children — my own flesh and blood — wither away in front of me.
Time helped. As it marched on, so did our lives. My sons grew up and found their own interests. They are now becoming young men. Although they aren’t perfect, and they sometimes struggle with their diagnoses and loss of abilities, they are happy and well-adjusted. They have found purpose, meaning, and a zest for life.
My family has accepted Duchenne as a part of us, and we have learned to live life to the fullest. We spend time pursuing the things that make us happy and whole. We love and enjoy one another and our time together. So, when all eight of us — and soon to be nine — are in a room together, it feels like we have everything we need.
I carry so much more than Duchenne. I carry the love I have for my children and my husband everywhere I go. I carry a faith that is my buoy during hard times, and that ignites my joy and hope during good times. These are more significant than any X-linked disease.
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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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