I am always learning more about life with Duchenne
The learning curve is steep for a mom of 3 boys with DMD
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When three of my sons — Max, 18, Rowen, 15, and Charlie, 13 — were diagnosed with Duchenne muscular dystrophy between July 2010 and August 2011, my learning curve was practically a vertical line. When the diagnosing doctor first said “Duchenne,” it was the first time I had heard it. My initial question was how to spell it, and my questions haven’t stopped since.
There is always something to learn. When my sons were younger, I needed to know what medicines they required, what the different neuromuscular clinics offered, what specialists the boys had to see, and what a clinical trial was.
Now that my sons are young men beginning to engage in the adult world, I’m asking new questions. Max graduated from high school last month, registered for college courses this summer, and will move into a dorm in August. He wants to have a hospital bed at college, but I knew insurance wouldn’t pay for another one for him. How would we afford a second hospital bed for Max?
I follow a social media page about taking Duchenne to college, so I posted the question, “What did you do for a bed in the dorm room?” Within minutes, there were several responses: You can buy a new one, rent one, buy a used one, or try to find one from a lending closet.
Those answers made me realize that if I posted in my Nebraska Duchenne group, surely another member would know where to find a used hospital bed. As it turned out, one person said they had a bed sitting in storage that they were happy to part with. We now have a bed for Max’s dorm room!
I am always learning, and Max attending college has introduced me to a whole new chapter on living with Duchenne.
Another learning opportunity
My learning isn’t limited to college, though. Rowen will be a high school sophomore this fall and is now starting his first summer job. He will work as a gatekeeper at our local softball complex during weekend tournaments, as part of a two-person team. One person will collect the money, and the other will put wristbands on the people who pay admission.
However, I’ve been to the complex several times and know that the shed where they collect the money isn’t accessible. The person who puts on the bracelets always sits outside the shed for easy access to the patrons’ arms, which could work for Rowen. But because it’s difficult for him to lift his arms high or often, I worry he’ll be unable to put on the wristbands.
My gut reaction is to contact Rowen’s manager and solve these potential issues before his first workday. But I’m learning that problem-solving isn’t always my job. I want my sons to have as much independence as possible, and if I solve everything for them, they won’t develop that necessary skill.
When Rowen was younger, it was appropriate for me to advocate on his behalf. But I’ve also worked hard all these years to teach him to advocate for himself. This is one of those times where I have to keep quiet and let him figure it out and talk it through with his supervisor.
In the end, the job might not work out. But maybe everyone involved will surprise me and find a way for Rowen to be on the staff. Either way, it will be another learning opportunity.
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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