We shout, ‘Not today, Duchenne!’ and Duchenne whispers back
My son Max turns 20 this month, reminding me of a long-ago prognosis
My oldest son, Max, was diagnosed with Duchenne muscular dystrophy (DMD) in 2010, when he was 4. The doctor told us to expect that he’d need help with all of his activities of daily living in his teens and that he would die in his early 20s.
Max turns 20 on Nov. 9.
The doctor’s disclosure was hard for me to accept. I grieved for months after Max’s diagnosis, which was followed by my sons Rowen, 16, and Charlie, 14, also being diagnosed with DMD. Those months were the hardest I’ve experienced as a parent, and I have never accepted that 20 years was all I would have with my sons.
Since their diagnoses, I’ve worked hard to remain in the present, focusing on the time I do have with them and trying not to think about the time I might not get with them.
Celebrating everything, large and small
We live a very full life. Along with Max, Rowen, and Charlie, we have four other children: Lexi, 24; Chance, 18; Mary, 11; and Callie, 3. My husband, Jason, and I only have one hobby, really, and that is following our kids. Whatever they are doing in their lives becomes our new favorite thing to do.
Being busy following seven kids to band, theater, choir, softball, basketball, baseball, and spending time with them at home watching movies, swimming in our pool, and working together in the garden and yard helps keep our minds off the complex parts of Duchenne — its progression, the loss of abilities and independence, clinical appointments and clinical trials. Not giving in to grief and anger, and the feeling of losing control that comes from watching our sons slowly slip away, one muscle fiber at a time, can be challenging.
We are always aware of DMD’s presence in our life, and as a family, my husband and I have developed our own response to what the doctor told us. We celebrate both the little victories and the big accomplishments, and everything in between, and we love to say, “Not today, Duchenne, not today!”
When Max was still walking and began middle school, we celebrated and said, “Not today, Duchenne.” Max no longer walks, but for one of his high school senior pictures, he stood up. He now attends college.
When Rowen stopped walking, but still wanted to get on the giant jumping pillow at the pumpkin patch, we lifted him up, rolled and bounced with him until he was delirious with laughter, and Jason and I said, “Not today, Duchenne!”
The summer before Charlie started high school, he decided he wanted to be a member of the marching band. It took a lot of planning and a grant to purchase new equipment for his wheelchair, but as Charlie rolled down our town’s main street with the Marching Tigers during every parade of the season, we said, “Not today, Duchenne!”
When our family figures out how to beat Duchenne, we celebrate.
But my oldest son turns 20 very soon and I am feeling the weight of that. As Max’s birthday approaches, what the doctor told me years ago repeats like a whisper in my ear and resonates just a little louder than our own refrain, “Not today, Duchenne.”
Note: Muscular Dystrophy News Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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