The Waiting Game Can Be Tough to Play
My family has had a hectic week. It started out lovely; the entire family, all nine of us, spent a beautiful, springlike day together at the zoo. By Sunday evening, however, we had kids…
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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Couch shopping awakened me to a focus on my children with DMD
I think about things deeply, rolling ideas around in my head until they make sense. My creative side, the writer, likes to wonder in this way. And as an introvert who naturally tends to…
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Who Are the Rarest of the Rare?
The adjective “rare” refers to an event, situation, or condition not occurring very often, not found in large numbers, and consequently of interest. For example, Duchenne muscular dystrophy (DMD) is a rare disease affecting…
The Chance of Having Only One Son Without Duchenne MD
My husband and I have four sons, but I spend most of my energy in this column writing about the three who have Duchenne muscular dystrophy (DMD). I often wonder what the chances are…
Learning to Balance Caregiving and a New Baby
Living with a rare disease like Duchenne muscular dystrophy is more than doctors’ appointments, medicines, and wheelchairs. It affects every aspect of my family’s life. When I started writing this column, I was afraid…
My Sons’ Birthdays Stir Up My Emotions
January is birthday month at our house. We have four birthdays in January. That’s almost half of our family celebrating their arrivals on the planet in the same month. Our newest addition, our 3-week-old…
Duchenne Gave Us a License to Live Our Own Way
My family stands out. I’ve shared that with you before. The sheer number of children is enough to make us different. But three boys with Duchenne muscular dystrophy (DMD), often seen in…
What We’ve Learned About Marriage as DMD Parents
My marriage is one of the most important things in my life. Shortly after my sons were diagnosed with Duchenne muscular dystrophy (DMD), I heard a staggering statistic about the divorce rate among DMD…
3 Reasons I Love Having 3 Sons With DMD
Before COVID-19, I used to travel a lot and participate in several in-person meetings and conferences related to Duchenne muscular dystrophy (DMD). Unfortunately, having three sons with DMD is somewhat rare, so I was…
What I’ve Learned About Adaptive Skiing and Duchenne
In a previous column, I mentioned that my family would be skiing in Winter Park, Colorado, over Christmas break. My sons Max, Rowen, and Charlie, who have Duchenne muscular dystrophy, tried adaptive skiing…
Coping With the Stress of Caregiving
Being the mother and caregiver of three sons living with Duchenne muscular dystrophy brings a lot of stress. Much of it is everyday stress that I have learned to live with and don’t always…
Holiday Gift Ideas for Loved Ones With DMD
I often see posts in Facebook groups and other places asking about what holiday gift ideas people might have for sons with Duchenne muscular dystrophy (DMD). Duchenne can affect different muscle groups, and…
Taking a Break During Clinic Week, Feeling a Little Guilty
My husband, Jason, and my three sons with Duchenne muscular dystrophy — Max, Rowen, and Charlie — just pulled out of the driveway. They are headed to Denver for neuromuscular appointments that start…
