8 Things I Wish I Knew When My Sons Were Diagnosed With Duchenne

My oldest son, Max, was diagnosed with Duchenne muscular dystrophy (DMD) on July 10, 2010. During the following year, my sons Rowen and Charlie were also diagnosed with DMD.

In a few days, it will be the 12th anniversary of Max’s diagnosis. But for me, July 10 serves as the diagnosis anniversary for all three of my boys with DMD, because at that point, we realized there was a chance our younger sons would be affected, too.

For many years, I treated the day as an anniversary of a death. I mourned everything, from how I thought life would look like for my children, to the hard things they had to endure.

I’d spend the day angry because I could only envision a future where they lost the ability to walk and didn’t have a healthy heart or strong lungs. I couldn’t think about all they could still accomplish. Not because I didn’t believe in my sons, but because I was scared to dream about something that Duchenne might not allow.

Recommended Reading

June 10, 2022 Columns by Betty Vertin

Finding Hope Through the Seasons of Duchenne MD

In recent years, however, the day has passed without much thought. The first year that happened, I was surprised. But then I realized that growth had taken place. I had begun to intentionally focus on the joy around me, preaching that when I added up all the little joys I experienced, the sum was greater than Duchenne.

I wanted to be more grateful and didn’t want Duchenne to be the worst thing to ever happen to me.

When I intentionally started focusing on the good, it wasn’t because I wanted to change my response to the diagnosis anniversary. Still, it happened, and I’m so glad it did.

Along the way, I started to notice all the good that Duchenne had brought into our lives. So today, I want to share some things I know now that I would have loved to tell myself 12 years ago when I was struggling to see anything but the challenges before my sons and me.

The boys will still have a good life. They will be boys. They will find the things they love to do, and they will do them well. They will encounter challenges, but they will have many more good days than bad. And all the while, they will tell fart jokes and talk about poop, until they are teenagers and get even raunchier! You will still be a #BoyMom.

It’s not your fault. Yes, you are a Duchenne carrier, but you didn’t know. If you had to do it all over again, you would still choose your boys because they are your boys! They are precisely the children God always knew they would be. That is what you prayed for.

Don’t be afraid to dream. Max loves theater. He performed on the most famous stage in Nebraska. He knows what he wants to be when he grows up, and you are planning for college. He’s good. Rowen is so bright and loves to broadcast. You will work to get him involved in a high school broadcasting program, and a career is possible. Charlie is sweet and kind, and I don’t know what he’ll be yet, but sweet and kind is a beautiful place to start.

You have friends and family who have your back. They will be with you at every step and ensure the boys have everything they need. You are not alone.

The Duchenne community is fantastic. Don’t wait three years to get connected. They are your tribe and will help you on this journey more than they ever know.

Get a pool. The boys love water and will be standing in the pool long after they stop walking on land. Swimming is a perfect family activity and ensures that they have memory-filled summers.

Your family is not done growing yet. Don’t mourn the fact that you don’t think you will have more children.

There will be adventures. Go on them. Be creative. Find a way. Make memories. Please don’t say no because it’s not accessible. Say yes because you can.

This list is not exhaustive. Duchenne is different for every family. There are tough days and challenging obstacles. Take time to feel, mourn, and process them. But I believe every Duchenne family can have peace and joy and live a full life.

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.