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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The unbearable weight of grief that smoothes the jagged edges

I type my columns on Tuesdays, but I write them in my head in the days before. I consider what to write, how to begin, and the words to use to share my life experiences. My family is fun, and my columns often reflect that, to show the lessons I’ve…

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Columns

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…

Columns

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.

Columns

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…

Columns

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…

Columns

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…

Columns

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…

Columns

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…

Columns

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…

Columns

Parenting in a Duchenne Family Is Hard, But What About the Siblings?

It’s tempting to label the siblings of those who have Duchenne muscular dystrophy as the “unaffected siblings.” But I can never seem to get those words out of my mouth. Siblings are indeed affected by Duchenne. In my family, the siblings, Lexi, Chance, and Mary, experience Duchenne daily, even though…

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My Son Is Living a Fuller Life Than We Ever Imagined

My oldest son with Duchenne muscular dystrophy, Max, starts his sophomore year in high school this week. He will be halfway through his high school education by the end of the school year. For a long time, I was afraid to look too far into his future. At diagnosis, a…

Columns

6 Ideas for Back-to-School Success

My kids return to school next week. As always, there is so much to do to get ready. In addition to back-to-school shopping and open house, I have to ensure Max, Rowen, and Charlie, my sons with Duchenne muscular dystrophy (DMD), will be successful and that their school is…

Columns

This Duchenne Muscular Dystrophy Family Lives Life to Its Fullest

A hostess I am not! Planning a child’s birthday party or hosting a team meal is the extent of my party planning skills. I am usually introverted and quiet, and only a few people will hear me talk much. Writing is my favorite way of communicating, and it has led…


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