Feeling thankful despite a busy schedule and disappointing news
Living with Duchenne muscular dystrophy is hard but rewarding
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I’m looking out our patio doors at our backyard. I can hear the not-so-gentle Nebraska gales blowing around the wind chimes this morning as I watch leaves drift through the air.
I’ve just come in from a fast-paced walk; sweat is sticking to my neck, and my heart rate is still slowing down. The endorphins have kicked in, and I’m relaxed and less stressed. I feel like I can breathe. I’m not a runner anymore, but I still experience runner’s high.
The past few weeks have felt like a whirlwind marathon for my husband, Jason, our seven kids, and me. Football, softball, theater, choir, band, school, and the strains of having three children with Duchenne muscular dystrophy (DMD) have made it nearly impossible to slow down and take a deep breath.
In addition to our regular schedule, last week, we found out that our three boys with DMD will not have an opportunity to participate in the ENVISION clinical trial we wanted them to be in. The gene therapy study will evaluate the safety and efficacy of delandistrogene moxeparvovec in nonambulatory and ambulatory boys and men with DMD. The drug was approved last June under the brand name Elevidys for ambulatory children with DMD ages 4 to 5.
Max, 17, Rowen, 14, and Charlie, 12, had discontinued a different trial drug, Translarna (ataluren), hoping to participate in the gene therapy study. We are crushed.
Buoyed by the small moments
But we’ve had just enough breaks to be able to keep going at our fast pace this fall. I’m so thankful we had Thursday evening free last week. The kids had no after-school activities or appointments, and Jason was off work on time, so we each just did our thing. I wanted to tear out the remainder of the garden before it turned cold, and Jason was tinkering in the garage, cleaning it up. Our two younger daughters were playing in the yard, and we planned to grill dinner on the deck and enjoy it together.
That would have been enough, but at one point, I was on our back deck and just happened to look through our patio doors. What I saw melted my heart. Max was reading at the table, Charlie was sitting next to him, drawing pictures, and Rowen was a few feet away on the couch watching one of his favorite wrestling shows.
I’m smiling again at the thought of that moment. It was everything. Having seven children is a lot of work, but living with Duchenne muscular dystrophy drives us to work hard at everything we do. My husband keeps his work travel schedule, we attend multiple therapies and appointments, and we try to give equal attention to our children with and without DMD.
When I used to run half-marathons, there was always a point in the race, usually around mile nine, where I didn’t think I could continue and wanted to walk. I always felt gutted, having given the race everything I could.
I experience that feeling at least once daily now, usually after school. Rowen wants to sit down, my youngest is playing in the dog water, Max wants me to put the grab bars down in the bathroom, and Charlie has asked a dozen times for a pickle. Then Rowen needs a snack, I need to start supper, and it’s time to take someone to pool therapy. It lasts about an hour. I always push through, care for the kids, and eventually sit down, drink water, and am ready to go again.
But I keep pushing because I want all my kids to feel how my three boys must have felt when I looked through the window. I want them to have a place where they feel loved, safe, and cared for. I want them to be cozy and have access to everything they need. And I never want them to feel alone.
I was the only one who noticed that moment, but it was exactly what Jason and I have worked for. Max, Rowen, and Charlie were relaxed and had everything they needed. They chatted and laughed with one another, feeling happy, loved, and safe. I will always want more for them, including the best medical care and treatment possible. I want opportunities that don’t yet exist for young men with Duchenne. But until then, I can live with myself, knowing they have everything else.
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.
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