Meeting the challenges of DMD with laughter, love, and learning
A serious injury threatens to disrupt an important moment in a teenager's life
by |
Life with Duchenne muscular dystrophy (DMD) doesn’t get easier as time goes by, but it’s made better by laughter, love, and everything that’s learned along the way.
Three of my seven children have DMD: Max, 18; Rowen, 15; and Charlie, 13. As you might imagine, my life is busy and challenging.
Recently, Max said someone asked him how he was doing, and I’ve been pondering that question ever since.
Max fell a week ago when we were transferring him into bed, breaking the fibula and tibia in his lower left leg. His legs had given out, and although we were standing right next to him, we couldn’t prevent the fall.
I won’t sugarcoat it: It was devastating.
Max will graduate from high school next weekend after having a beautiful senior year. He earned college scholarships and senior awards, had an important role in his school musical, and even went to prom. It’s the happiest school year he’s ever had, and my heart has been rejoicing with him every step of the way. But Duchenne simply wouldn’t let him win, and that broke my heart.
When we returned from the emergency room that Friday night, the entire family was physically and emotionally exhausted. Max, my husband, Jason, and I didn’t sleep much that night, as Max was uncomfortable, in pain, and angry.
Let love live
I woke up that Saturday morning, shared what had happened on social media, and asked for love and prayers to be sent Max’s way. I also shared that line about Duchenne not letting Max win. Then I posted a photo of him in the ER and set my phone down.
The next time I picked it up, over 500 people had read my post, and more than 200 had commented. That represented much love and many prayers. Knowing that so many people were in Max’s corner made a big difference to us. One of my friends pointed out that the broken leg didn’t mean Duchenne had won; rather, love had won because of the number of people who cared.
When Max woke up Saturday morning, he was in great spirits. I couldn’t stop crying whenever I thought about the situation, but he just smiled and played games. He received several texts and had a few visitors, and on Sunday afternoon, he proclaimed that he’d had a great weekend, except for the broken leg.
This isn’t the first time one of the boys with DMD has had a broken leg. I’ve learned a lot from past experiences and was better prepared this time. I asked the right questions and reached out to experts. We’re hopeful that Max will have a full recovery.
Despite the pain, Max attended senior honors night on Monday. A teacher there asked how he was doing and said he was sorry about the broken leg. Max just smiled, shrugged, and said, “What do you do?”
I think the answer to that question is that you focus on love and the things you’ve learned. And you laugh!
The awards activity was held in the school auditorium, where Max had spent most of his time in high school. The stage has access ramps that he’s used hundreds of times. On that night, however, his leg was in a boot and he had his wheelchair’s foot rest lowered. When he started up the ramp to receive his first award, the foot rest banged into the ramp, making such a loud noise that I’m sure it startled people in the audience.
Max, Jason, and I laughed. What else could you do? It was funny because Max, of everyone in the auditorium, had used those ramps the most, yet he crashed into one of them the last time he’d be on that stage. That’s why I say laughter is an important part of dealing with this challenging disease.
The week was long and stressful, but what do you do? In this house, we love, learn, and laugh.
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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
About the Author
Comments