Party of 9 — Betty Vertin

A banner for Betty Vertin's "Party of 9" that depicts a large family walking across a field at sunset..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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Transitioning my son from pediatric to adult DMD care is scary

Last week, I traveled with my sons Max, Rowen, and Charlie to Colorado for their multidisciplinary neuromuscular clinic visit at a children’s hospital. My husband and I typically don’t both travel with the boys, so one of us can stay home with our younger daughters. This time, it was…

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What It’s Like Having Children as a Duchenne MD Carrier

I didn’t think we would ever have more children after I found out 10 years ago that I was a carrier of Duchenne muscular dystrophy. But here I am in the homestretch again, in the last trimester of pregnancy. The weeks have been flying by, but my pregnancy…

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Moms Can Do It All, but That Doesn’t Mean We Should

The title of this column comes from a meme I saw this week. Its message found me at a time when I needed to hear it. My three sons with Duchenne muscular dystrophy have appointments at Children’s Hospital Colorado the first week of December. (Yes, we must take three…

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A Look Back at a Halloween Filled With More Treats Than Tricks

Halloween is over, and I’m happy to say we all got through it. While it was one of my favorite holidays when I was a kid, celebrating it with children with Duchenne muscular dystrophy has made trick-or-treating challenging in ways I never dreamed of. This week, I’ll be writing…

Columns

It’s Never Just a Cold

I have shared many times in this column that I have three sons with Duchenne muscular dystrophy. People sometimes think I’m an expert on the subject. But the truth is that my boys are unique, and Duchenne has affected each of them differently. Their disease progression and weakening muscles…

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Making Friends, Having Friends With Duchenne MD

On a Facebook page that documents our family’s journey with Duchenne muscular dystrophy, I recently posted about how invitations to birthday parties and friends’ houses are not typical for my three boys with Duchenne, especially with them using chairs full time. However, the post celebrated the fact that my…

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I Carry Duchenne Muscular Dystrophy, Which Was Hard to Accept

I think all moms need strong shoulders and extra arms. We carry purses, diaper bags, backpacks, and discarded jackets. Duchenne moms carry more, including sometimes our kids and their equipment, although I’ll admit that power wheelchairs are great for carrying bags without tipping over, unlike manual chairs and strollers.

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Meeting My Children’s Needs With Good School Relationships

I have a decorative sign hanging on a wall that says, “Life starts all over again when it gets crisp in the fall.” The fall reminds me that we need to begin to prepare for school. Every fall, my husband, Jason, and I attend individualized education program (IEP) meetings…

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Preparing to Be Caregivers for Adults With Duchenne MD

Three of my boys were diagnosed with Duchenne muscular dystrophy when they were small. We’ve spent many years preparing to be caregivers for them as adults with Duchenne. We remodeled our home, added ramps to the front and back of our house, and upgraded to a wheelchair-accessible van. The…

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Why I Love the Ordinary Moments of Motherhood

I love the everyday, ordinary moments of motherhood. Maybe I’m crazy, but the laundry (no matter how never-ending), groceries, menu planning, and chauffeuring of kids all bring me so much joy! Duchenne muscular dystrophy can be a thief of that joy. Duchenne is hard to plan for, and because…

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My Sons Decide Whether to Attend the Homecoming Dance

It’s homecoming week here in Nebraska. Our local high school has its homecoming football game today, and the dance is tomorrow. I love homecoming. It’s a time of fun and excitement. The crowd at the football game always seems full of extra energy. The kids get dressed up and…

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When Mom Is Tired, Caregiving Is Hard

I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have identified with anything more today. If you haven’t guessed it yet, I am exhausted. I was a single caregiver and…

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What I’ve Learned About Anxiety and Duchenne Muscular Dystrophy

Our family has encountered many challenges in our journey with Duchenne muscular dystrophy, and there will be more to come. If I were to ask the question, “What is the hardest part of Duchenne?” in a room full of parents whose children have the condition, there likely would be as…


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