Love is bigger than Duchenne muscular dystrophy

Seasons of joy and sorrow bring perspective to our life with DMD

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by Betty Vertin |

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Duchenne muscular dystrophy (DMD) can be all-consuming. It’s so big that it often takes up all the leftover space in a room. However, we’ve had years where life is bigger than Duchenne. I’m grateful to be experiencing one of them now.

My life often revolves around DMD because three of my sons have it (Max, 17, Rowen, 14, and Charlie, 12), but also because I’m an advocate, constantly working to improve the lives of all of those with DMD. I write this weekly column and share my life openly on social media to raise awareness.

But bigger things are happening in our family right now, and they’re taking the focus off Duchenne.

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Spending more time with my Duchenne MD kids is bittersweet

Seasons of joy and sorrow

My oldest daughter, Lexi, 22, got engaged last weekend! We love her fiancé, and he blessed our family by inviting us to be there when he proposed. We stayed the weekend in Lincoln, Nebraska, where they live, to continue celebrating.

I’m so happy for the newly engaged couple. I know this young man is exactly the person I’ve been praying would come into Lexi’s life. He’s good and kind and makes her happy.

And now we get to plan a wedding, a celebration of love! It’s been fun to have the preliminary conversations. I’m giggling as I write this, but Lexi’s younger siblings have had some strong opinions about the wedding. It’ll be interesting to see which ideas make it to the big day.

As wedding preparations get underway, we’re still celebrating the final year of high school of our oldest son, Max, and enjoying all the privileges and lasts that come with graduation. He has open periods at school each day, which means he’s allowed to leave campus. This week, he’s auditioning for his final fall play, and we scheduled college visits to five schools here in Nebraska.

Max will probably end up living at home, but recently, he’s been more open to considering living on campus with the proper support available. I was once afraid to dream about this kind of future for him, so we’re embracing it!

As a family, we’re in a season where we have much to enjoy and look forward to. Of course, Duchenne will be along for the ride; it never relents. But we’re packed to the brink with joy as we experience life’s precious gifts.

This period is not the only time I’ve been reminded that life is bigger than Duchenne. Several years ago, my husband, Jason, and I each lost a parent — his dad and my mom. My younger sister died in between our parents’ passing. It was an intense year of grief, and Duchenne was in the back seat as our broken hearts found new ways to live without the ones we’d lost.

Gaining perspective

Both a good year and a bad year have put Duchenne in its place: where it’s present, but not running our lives. But as I compare this year with our experience years ago, I realize they aren’t so different. While this year is full of laughter and celebration and the other was full of tears and grief, love was the reason for both.

Love is bigger than Duchenne.

My daughter is in love. We love her fiancé. Jason and I have showered Max with all we have, including love, to help him find success despite Duchenne. My family was together all weekend because we were celebrating love! And when we mourned the ones we lost, we mourned because we loved.

Life gets busy, and Duchenne takes up much space. It’s difficult not to let Duchenne sit in the driver’s seat. I’m no good at it. Partly because I love my sons so much, I’ll fight DMD with all I have to keep loving my boys earthside. But in the end, the thing that beats Duchenne, that’s more significant than Duchenne, is love. I feel so blessed to be reminded of that this year.

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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