Reflecting on the beauty in life with Duchenne muscular dystrophy

I have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. While caregiving and parenting three young men with Duchenne is full of the challenges and heartaches I often share in this column, they do not outweigh the beautiful moments.

Joy and suffering coexist with Duchenne, much as they do apart from DMD. It’s easy to concentrate on the hard parts and want to scream about them so the world might understand what we’re going through. But today, I want to reflect on the beauty so that the world can know about it.

Finding the joy

The first thing I say to families that have a child newly diagnosed with DMD is, yes, this is a hard life, but it’s a beautiful one, too. I believe and live it.

Often when people from the Duchenne community meet me for the first time, they’re overwhelmed by the fact that I have three sons with the condition. They know how hard the DMD life can be, so imagining the hard part multiplied by three gives them pause.

However, I hope they’ll soon realize that I also experience the beauty and wonder three times over. The greatest compliment I’ve ever received was from a mom whose son had recently been diagnosed. I met her at a local conference for families living with Duchenne. She said she was surprised to see how happy we seemed when rolling into the room.

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Much of our laughter and joy stem from Max, Rowen, and Charlie, purely because they are hilarious! They are so funny, and they feed off one another. They know when they’re being watched — admittedly, the three of them stand out when they’re together — and they know how to put on a show.

I can’t tell you how many belly laughs have brought tears to my eyes and me to my knees in a waiting room, elevator, doctor’s office, or some other place. Most recently, I was sitting with all three of them in the cardiology exam room, waiting for the doctor to arrive to talk to us.

Charlie was trying to say the word “monitor,” but he couldn’t pronounce it, no matter how much we tried to help him say it right. We were dying of laughter and had the most challenging time pulling ourselves together as the doctor walked in.

As I reflect on that day, I am so proud of us. We are facing a fatal disease that is slowly robbing my sons of their physical abilities, and someday, it will rob them of their lives. And yet, we can laugh. We laughed so hard we couldn’t contain our joy. I imagine the doctor often finds families in other states of emotion. I’m glad she found us in a fit of laughter.

Beauty in simplicity

But it’s more than our laughter and my sons’ fun nature. The beauty also lies in the tender and soft moments of caregiving.

I was awakened late Sunday night by Charlie standing over me with tears in his eyes. He couldn’t sleep. He needed me. I got him comfortable on the couch because he didn’t want to return to bed. All he needed was a little assurance, and he dozed off.

Then my phone rang at 3:15 a.m. It was Max calling from his room because he needed to use the restroom. As I walked down the hall from Max’s room, Rowen called my name. He could hear me. Rowen usually asks Charlie to get his dad or me if he needs something, but Charlie was on the couch, so Rowen was calling for me. It was so soft that I wouldn’t have heard it had I not been in the hallway.

He needed me to set him up and readjust his sheets. I remember sitting on the floor at the foot of his bed, waiting to make sure he would go back to sleep.

I was so thankful for that moment — to be his mom and there when he needed me. If I hadn’t been there, the boys would’ve had to wait to go to the bathroom or lie awake uncomfortably. I may be unable to give my children the world or cure them. But I can relieve their fears and discomfort and be their legs and arms when their own have grown too weak. Giving to my children in that way is beyond rewarding and beautiful in its simplicity.

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.