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

When I get overwhelmed by life as a caregiver, I count my joys

Pulling into a parking spot at my oldest son’s high school, I hit a parked car with my van. Thankfully, there was no damage to either vehicle, and the car’s owner, sitting in the front seat when I hit it, was amiable and understanding. I could safely unload my son…

Columns

How I realized I was doing too much for my sons with DMD

I do too much. You might assume I’m talking about caregiving because you’re reading a column written by a caregiver. And in part, you’re right. But mostly, it’s an admission that I’ve been doing things for my three sons with Duchenne muscular dystrophy (DMD) that they can…

Columns

Sometimes living with Duchenne is simply too hard

I love to read, but finding time to sit down with a good book can be challenging in my busy house. As a mom to seven and a primary caregiver to my three sons with Duchenne muscular dystrophy (DMD), quiet time is often interrupted by my children. Occasionally, however,…

Columns

Caregiving for sons with DMD is like being a frog in boiling water

One of my favorite early-summer memories is from when my sons Max and Rowen were younger. Both lovely little boys — one blond-haired and blue-eyed, the other dark-haired and brown-eyed — squealed with laughter upon discovering a frog in our front yard. Max held the frog up in his hands…

Columns

Living with Duchenne muscular dystrophy and our bundle of Joy

There is joy after a diagnosis of Duchenne muscular dystrophy (DMD). There is joy after the loss of ambulation. There is joy in the midst of watching Duchenne slowly work its progressive, muscle-wasting way through my sons Max, 18, Rowen, 14, and Charlie, 12. That may be hard…

Columns

Hope is scary, but important in life with Duchenne MD

I forgot how scary hope can be. There was a time, a few short months, when I realized I was giving up. I accepted that Duchenne muscular dystrophy (DMD) would continue to progress in my sons, and there wasn’t much I could do about it. I hadn’t thrown in…

Columns

Why each stage of DMD progression is uniquely challenging

“The stages of Duchenne.” I remember seeing this heading on many of the websites I obsessively read when I learned that my three sons, Max, 18, Rowen, 14, and Charlie, 12, had Duchenne muscular dystrophy (DMD). The stages of Duchenne are like a timeline of disease progression. Parent…

Columns

3 tips I found helpful when finding accessible hotel rooms

I’m a small-town girl. I love that I can get from one end of my hometown in rural Nebraska to the other in a few short minutes, that there is never traffic, and that the only time I get stuck in a crowd is if I go to the county…

Columns

The timing, choices, and challenges of managing clinical trials

Note: This column describes the author’s sons’ experiences with a trial dose of Translarna (ataluren) in the U.S. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’m a mother to three sons with Duchenne muscular dystrophy (DMD): Max, 18,…

Columns

How much of an emotional toll does DMD take on me as a mother?

How does Duchenne muscular dystrophy (DMD) affect me as a mom? Am I numb? Have I accepted it? Has DMD killed a piece of my heart? Will it keep taking parts of me? These questions have been weighing on my heart, but it’s been hard to put them into…

Columns

Celebrating a new high school experience for our son with DMD

It was almost midnight on a Friday night, and for hours, my husband, Jason, and I hadn’t seen or heard from our oldest son, Max, who has Duchenne muscular dystrophy (DMD). In most situations, we would’ve been out of our minds with fear. But that night, we were smiling.


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