4 Reasons to Celebrate as My Sons Grow Older With Duchenne
Living in the present can ease anxiety about the future
Birthdays can be challenging for parents of children with Duchenne muscular dystrophy (DMD). When our children were diagnosed, we were given a life expectancy. And as our children turn a year older, it’s a reminder that we’re closer to the number doctors told us when they said that Duchenne is fatal.
I’ll be the first to admit that I’ve let a few of my sons’ birthdays get the best of me. I allowed them to seize me with fear that we were one year closer to fulfilling their life expectancy.
Over the years, though, I’ve been able to change the way I think. Of course, there will always be grief for what my boys are experiencing and the future they’ll face. There will always be parts of it that scare me.
However, I’ve found some things that help to keep me in the present so that I don’t let the future steal my joy on my sons’ birthdays.
How to stay in the present
First, if I remember that we’re doing things for the boys that have never been done before, it’s easy to celebrate. Our actions could help change the outcome of the disease, improve the quality of life that older boys and young men experience, and increase life expectancy. That’s worth celebrating.
My three sons have been in a clinical trial for eight years. We travel to an excellent comprehensive neuromuscular clinic and see high-quality medical providers. Additionally, we’re proactive with drug therapies. Knowing we’re doing all that’s in our power as best as we can helps me stay in the present and not focus so much on my fears of the future.
Second, I don’t know what the future holds. I have thoughts and ideas about it. I know what the doctors have said, and I know about the disease’s progression, but that doesn’t mean I know what’s going to happen. So reminding myself that I don’t know what’s ahead or how it’ll occur helps keep me in the present and stops me from getting too far ahead.
Third, my sons are happy. They get frustrated with their disease and its effects on their bodies. They have fears and anxiety as well. But they like their lives. They’re happy. They like their rooms and gaming systems, their schools, and their activities. They have dreams. I’m so glad they’re happy, which is a reason to celebrate.
Finally, their lives have purpose and meaning — every year they live that out is worth celebrating. And it’s easy if I follow their lead!
I don’t mean this as a list of accomplishments, but my youngest son, Charlie, who turns 12 today, had a great year. He got confirmed, graduated elementary school and started middle school, began learning to play the drums in the school band, and had a great summer poolside. If you asked him, he’d tell you life was pretty great.
Rowen, my middle son with DMD, turns 14 on Saturday. I know he won’t read this, so I’ll share that he’s getting tickets to a live WWE event. He’ll be ecstatic, as he is every Monday and Friday when wrestling is on TV. He wants to be a broadcaster someday and loves how the commentators on those shows interact with the wrestlers. Next year, he wants to be part of the high school sports broadcasting group. If you asked him, he’d tell you that he can’t wait for the future.
And my oldest, Max, who turned 17 in November, spent the night of his birthday at a fancy theater watching a musical! His smile lasted a week. He loves all things theater; every spring, he performs in the school musical and is also a member of the high school show choir.
He went to his first show choir competition last weekend and repeatedly told me that he had so much fun. If you asked him, he’d say that DMD has yet to cause him to miss out on anything he’s wanted to do.
I’m going to sign off here, as Charlie will be home in an hour and we’ll celebrate all night long. I won’t be surprised if we have a kitchen dance party!
Duchenne is so hard — every aspect of it. It takes intention and determination to not let it get the best of me. According to the diagnosis, I stand to lose a lot to the disease, so I don’t plan to let it take the happiness of celebrating my sons’ birthdays anymore.
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.
Vikki A. Stefans
MDA doc here. I advise future docs NOT to give out numbers!!! First of all, we don't know what the future of therapies will be and we've already gone way beyond the teenager life expectancy we used to have in the bad old days before corticosteroids and optimal preventive care. I tell new families that when their son turns 21 we'll start seeing them over in the adult MDA clinic. SO happy to hear from a justifiably proud mom whose sons are happy accomplishing things and enjoying themselves!!
❤️ My heart is with you. You are an amazing woman and mom. Your sons are very blessed.
David, our son turns 30 next month! We were told the same things about life being cut way short. Actually, he did die at Hershey Medical a few years ago. Doc tracheid him and Jesus sent him back. He met Jesus and HE told him to return back to his father saying that it wasn't his time yet. He came home and wrote a book. Then another book, and another and another. Turns out he was gifted writing Angels who assist him in writing these books. As of yesterday 1/25/2023, he has 123 books published on Amazon ! He sits at his desk and writes all day every day Its truly amazing.