Duchenne MD is all-consuming and painful, but beautiful, too
Unexpected gifts come along while living with Duchenne MD
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As I’ve tried to decide what part of Duchenne muscular dystrophy (DMD) to write about this week, I can’t seem to come up with the amount of focus necessary to do so. Instead, Duchenne is always there, all the time. Does that happen to anyone else?
Duchenne can take over a day or an entire week of our lives, just like that, and without warning.
This week, I participated in a parent advisory board meeting via Zoom, sharing my experiences as a parent of three sons with DMD. As an introvert, it always takes a little extra out of me to socialize. Even though it was a virtual meeting, I still talked and interacted more than I’m used to.
I’ve gone to two of four pool therapy sessions scheduled for this week for my three sons. While I love our physical therapy office, after several weeks of appointments, I can’t wait for summer. We utilize our outdoor pool in the summer and take a couple months off for more appointments.
This week is also the start of tech week for my oldest son, Max, who is 17. Max is very involved in his theater department at school, and tech week is the last week of intense rehearsals before an upcoming show. Tech rehearsals last for hours, until things are ready for the performance.
We’ve learned over the years how to help Max manage his fatigue during tech week, but it’s all hands on deck. That means less rest for Mom and Dad, and more than a bit of caffeine for Max. It also requires Mom or Dad to get him into costume and do his makeup before we drop him off at rehearsal. Of course, it’s his preference that we help him.
The theater director picked his costume so that the audience would see Max and not his chair. He actually said that. I wanted to share that here for those who understand its beautiful significance.
It’s time
Duchenne isn’t always about big, significant events. Sometimes it’s what I’ve mentioned: appointment management and the small extra things we do for our sons that most people don’t think about.
But they can also be significant things. Tomorrow morning, for example, I’m helping my oldest daughter, Lexi, 21, begin the process of finding out if she, like me, is a carrier of Duchenne.
We could’ve found out years ago and were encouraged to do so. But we didn’t want Lexi to live with the knowledge of being a carrier during her formative years. Being a carrier is a heavy burden, and we didn’t want her to worry about things like having to tell potential boyfriends or deciding not to have children because she was afraid. Instead, we wanted her to be well-informed and ready to make her own decisions when she felt she was ready, and that time is now.
We did decide to monitor her heart, though, because she was an athlete, and carriers can sometimes have heart issues.
Being a caregiver and carrier of Duchenne is the hardest thing I’ve ever had to do. But it has also shown me the most beautiful side of people and life. It has blessed me more than it has burdened me. I have experienced love, gratitude, and generosity beyond my greatest expectations.
I want my daughter — and all my children — to have all of the beautiful pieces without any of the hard parts. But, of course, I know better than that. Through this process with Duchenne, I know that to see the beautiful parts, we must also experience the painful things.
As a caregiver, that’s the all-consuming bit of this. I will have to watch the children suffer at times, but I will never stop praying that the suffering they endure, no matter what it is, will act as a polish to make the beautiful parts shine.
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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