Celebrating the mothers I’ve met on my journey with Duchenne
Veterans' lessons and the sisterhood of the trenches have helped me and my boys
Every mom I know in the Duchenne muscular dystrophy (DMD) community has a diagnosis story. When I meet a DMD mama, we often share those stories; it’s a way we get to know each other. Part of my diagnosis tale, for example, is that after my three sons were diagnosed, the neurologist told us to take them home and love them. Then when they turned 6, the neurologist said, we could start them on steroids.
My sons’ diagnoses began when my oldest, Max, was 4. No one had to tell me to take my boys home and love them; I’d do that regardless. But I knew nothing else. I’d never heard of Duchenne before the day they said it’s what my sons were living with. Therefore, I had no idea what to do next. Waiting two more years until Max turned 6 didn’t work for me.
But the other DMD mothers did know what to do next, because they were living it. They were years ahead of me and offered practical advice that helped with everything, from getting through the fog of our sons’ diagnoses to helping me make decisions about what neuromuscular clinic to attend and what medicine to start and when.
As for the moms new to Duchenne, like me — well, we were in the trenches together. I often felt like we were back to back, providing enough support for one another to keep us from falling over. We were wading through the same murky waters of a new journey we never expected to be on together. I needed that shared experience.
When Duchenne hit my world like a violent storm and threw me overboard, the moms in the DMD community were my life vest. As we celebrate Mother’s Day this weekend, I’ll reflect on the beautiful blessings of motherhood. And in my extraordinary motherhood as a Duchenne mom, I’ll count among those blessings all the moms I’ve met on my way.
I’m grateful to the Duchenne moms who promised me the heartache I experienced after learning of my sons’ DMD would get better and wouldn’t hurt like that forever. If they hadn’t gone through it, I wouldn’t have permitted myself to hope and believe they were right. But I trusted them because I knew they understood my challenges, and how I might work through them.
I’m thankful for the first Duchenne mom I met in person at my first Parent Project Muscular Dystrophy (PPMD) conference. The diagnoses were still raw, and I was afraid to talk because I knew that with my words, tears would come, too. Then another mom sat next to me. We exchanged a few words and realized we were experiencing the same thing. As we sat together, I felt stronger. And that feeling has recurred as I’ve met and interacted with other moms. We’re all stronger together.
I’m encouraged by the Duchenne moms who told me we’re the experts on our sons. We’ll often know more than emergency room doctors and general practitioners. We’ll often know more about the way our sons learn than their teachers will. The moms have taught me to use my voice to ensure my sons get the care and services they deserve. They taught me how to advocate.
I appreciate the Duchenne moms who watched me cry and sat with me right where I was — the ones who knew the pain and fear I experienced at diagnoses, at the onset of heart medicine, at the loss of ambulation. These moms didn’t get uncomfortable with my pain or try to fix it because they’d felt it with the same intensity. They let me cry, but made sure I didn’t stay there. They were also the first to advise me to make sure I asked this and looked for that. They’ve always been able to help me balance the fear, grief, and anxiety with the practical, as those are all parts of being a Duchenne mom.
No parenting book explains how to mother a child or children with a rare disease. And maybe that’s OK because God made moms. And what I’ve learned from Duchenne moms is that we’re in it together, and that’s better than directions printed on a page. Happy Mother’s Day to all the mothers in the Duchenne community.
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