Sharing My Perspective on DMD With a Fellow Columnist
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This week’s column is a little different than usual. Hawken Miller, a fellow Muscular Dystrophy News columnist who has Duchenne muscular dystrophy (DMD), reached out to collaborate.
Hawken, who’s also a features writer for BioNews, the parent company of this website, asked me five questions about being the parent of children with Duchenne. In return, I asked him questions about his life with DMD. My responses to his questions are below. On Monday, Hawken’s answers (and my questions) were published in his column, “Hawk’s-Eye View.”
HM: I feel like sometimes I can barely manage my care. How do you manage it for three boys with Duchenne?
BV: It’s not easy, but it’s all I know. I’ve never had just one son with DMD, so as I learned how to care for my boys with DMD, I learned by caring for three sons. It takes more time to give them their medicines and follow the home stretching regimen. The number of appointments and medications and IEPs is triple.
I don’t work outside the home, so that allows me the time necessary to care for the boys. My husband, Jason, is very hands-on. He works from a home office, so he’s physically here to help when we need him. He accompanies me to as many appointments as possible and sometimes takes them solo. I couldn’t do this alone; I’m very thankful for my marriage and the team that Jason and I make.
Your oldest son with Duchenne recently got a summer job. How did he find something that worked for him? Why did you feel getting a job was important for him?
Max works at the local water park. This is his second summer at the job. Last year he worked in the concession stand, but with progression, he found that more difficult because his arm strength had declined. He’s transitioned to admissions and finds that better.
Finding a job was more something that he wanted to pursue rather than his father or I wanting it for him. His younger brother Chance, without DMD, was working and making his own money; it was something Max wanted for himself. As I mentioned in a recent column about summer jobs, Max’s primary motivator for a job was spending money.
What’s the most challenging part of being a parent to three with Duchenne? What’s the most rewarding?
The most challenging part is that there are three. Everything is triple. Three cough assist machines, three boys to stretch, three chairs, etc. Everything takes more time, and everything needs to be bigger. For example, an accessible vehicle must hold three power chairs, not just one. Everything is more expensive because it must be bigger or there needs to be three.
The most rewarding part is that we get them. My husband and I feel very blessed that we have been entrusted with their three beautiful lives and get to witness them. It’s awesome to have a front-row seat to Max, Rowen, and Charlie. In my column “3 Reasons I Love Having 3 Sons With DMD,” I share that we get the fun, the love, the memories, and the laughter three times.
How do they all help each other through changes as a result of the condition?
They are typical brothers in many ways. They fight and are sometimes mean to one another. They compete with and get jealous of one another. But I am thankful I have three sons with DMD because they don’t have to do Duchenne alone. They get to live with someone who understands their muscle weakness and disease progression and gets what they are going through because they are experiencing it, too.
The way they help each other is hard to describe. They have a special bond. Hours they spend together for the medical side of Duchenne have given them a closeness. They support, encourage, and comfort one another.
What makes each of your kids with Duchenne unique?
My three sons with DMD are each very different. Max was born to perform; he loves to be on stage. He is incredibly passionate about musical theater. As he looks ahead to college, he plans to major in theater and education, thinking that someday he may want to teach theater.
Rowen loves sports and has a great memory; he stores so many sports statistics there, much to my amazement. He loves WWE wrestling and “American Ninja Warrior” the most, but also follows professional football, baseball, and basketball. He is also more introverted than his siblings and enjoys his own space and quiet time.
Charlie is joy. He is happy; he rarely goes without a smile on his face. He loves his dad so much and is his mini-me. He can spend hours drawing pictures, takes time to stop and enjoy anything that catches his amusement, and has the best laugh.
Note: Muscular Dystrophy News 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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