4 Things I Never Worried About Before Duchenne
Are there curbs or cutouts? How many stairs are there? Is there an elevator? Is there space for multiple power chairs? How big is the bathroom? How far is the parking lot from the entrance? What do all…
Party of 9 — Betty Vertin
Betty Vertin is a mother and writer living in rural Hastings, Nebraska, with her husband and seven children. Betty is a caregiver to three sons, Max, Rowen, and Charlie. Her oldest was diagnosed with Duchenne muscular dystrophy in 2010 at 4 years old. The other boys were diagnosed with the same in the following year. Although Duchenne occasionally crashes the party, it has not kept her large family from celebrating and enjoying life. She writes her column in hopes of sharing her family’s experiences with others on a similar journey.
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Making modifications to curb the exhaustion of high school
Duchenne muscular dystrophy (DMD) is not a one-size-fits-all disease. I have three sons with DMD: Max, 17, Rowen, 14, and Charlie, 12. Each differs vastly from the others, from the speed of disease progression to how their bodies…
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How Duchenne Muscular Dystrophy Influences Our Christmas Traditions
Like many, we have a tradition of buying a real Christmas tree every year during the weekend after Thanksgiving. It just doesn’t feel like Christmas until we have visited our local tree farm to pick out the perfect…
Why I’m Grateful This Thanksgiving as a Duchenne Mom
While I love Christmas, I’m a Thanksgiving girl, too. Decorating for Christmas is one of my favorite things ever. I usually go shopping for vintage Christmas decorations and get at least one tree up before Thanksgiving. But I won’t…
Feeling Thankful for Those Who Make Our Journey Easier
I have three sons with Duchenne muscular dystrophy (DMD). We had little need for durable medical equipment when they were young, but their needs have changed as they’ve aged and their disease has progressed. We have hospital…
A False Alarm Reminded Me of the Importance of Having a Fire Plan
Bleep. Bleep. Fire. Fire. Bleep. Bleep. It was 3 a.m., and my eyes flashed open as I bolted out of bed. The fire alarm was going off. Before I had left the bedroom, my 8-year-old daughter, Mary, was flying…
4 Things I Find Overwhelming as a Duchenne MD Caregiver
As a caregiver to my three sons living with Duchenne muscular dystrophy (DMD), I’ve had a few bad days lately. I’ve generally felt worn out and a little sad, and the parties around here have been pity parties.
Finding Accessible and Companion Seating With Multiple Wheelchairs Is Tricky
My family enjoys attending sports events and theater productions. There aren’t many things we like more than a nice meal out followed by a game or a play. However, seating for families with wheelchair users is…
Years of Hard Work Are Behind My Sons’ Good Start at School
School and Duchenne muscular dystrophy (DMD) don’t always go hand in hand. But of course, they can — and when they do, it’s beautiful. But even then, I doubt it’s come about without an extraordinary amount of work…
How Making Memories Has Benefited My Family
The days are long, but the years are short. I’ve often heard that sentiment from parents whose children seem to grow up too fast. I’ve had several moments myself over the years of parenting my seven children. I had…
The Challenge of Dealing With Grief as a Mother to Children With DMD
Duchenne muscular dystrophy (DMD) is a progressive disease, but for me, the mother of three sons with DMD, things have been more nuanced. The grief I experience from being associated with a rare, chronic disease has been anticipatory,…
3 signs that I need self-care as a caregiver
As a mom to three sons with Duchenne muscular dystrophy, Betty Vertin sometimes feels that she needs to meet their needs at the expense of her own. Recognizing when she needs to take some time away for self-care is vital to her perseverance as a caregiver and her mental health as a mom, she says.
Why I’m Thankful for the Power of the Duchenne Community
There is power in community! I’m thankful that my family is part of a big, beautiful community: the parents, professionals, and, of course, those living with Duchenne muscular dystrophy (DMD). They are, in my opinion, the best! When…
