During a busy season, we must take things one day at a time

How I'm facing a hectic summer as a parent and DMD caregiver

Betty Vertin avatar

by Betty Vertin |

banner for Betty Vertin's

I feel relaxed — refreshed, even. We’ve had almost two weeks at home without any appointments or travel. The kids are complaining of boredom, but I’m letting boredom reign!

It’s a beautiful but rare occurrence for my family of nine. My husband, Jason, and I have seven children: Lexi, 23, Max, 18, Chance, 17, Rowen, 15, Charlie, 13, Mary, 9, and Callie, 2. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD), which makes Jason and me caregivers in addition to parents to our large crew. Our children are very busy, so we don’t typically have downtime.

Admittedly, having so much free time when you’re used to a hectic schedule can be challenging, but I fought against any urges to schedule something. I embraced the break and focused on rest and rejuvenation.

It was actually difficult to think of a column topic because nothing significant happened last week. However, for every quiet moment we’ve experienced lately, I know a chaotic flutter of activity is coming. We need to buckle up and hold on.

Recommended Reading
A boy in a wheelchair wearing goggles is being pushed along by a man wearing a cape.

Study highlights psychological, social challenges of having DMD

A slice of chaos

Starting June 13, we will be going in different directions for as many reasons as there are people in the family, and it will continue at full steam ahead until we can tear June out of the calendar.

The only clear way to explain is to invite you into our chaos. I will share it here and hope it doesn’t make you as dizzy as it makes me!

Max was in a musical this spring, and the cast has been selected to perform in a showcase for Nebraska high school theater programs. On June 13, they will perform a song in Omaha, at the most famed theater in the state.

At the same time, Chance will be in Arkansas with a teammate for a baseball tournament. Jason will stick with Max, who will need help getting into his suit for the fancy parts of the day and into his costume for the performance parts of the day. I’ll get the rest of the crew to Omaha.

Once Max performs, Jason will follow Chance to Arkansas, and I’ll return home with the other kids for a day of laundry and recovery. On Saturday, Mary plays in a softball tournament in Fairbury, Nebraska. I’ll have help that day, which will allow Max, Rowen, and Charlie to stay home. That’s important because, on Sunday, I leave with the boys for a three-day clinical trial visit in Denver.

I’m also taking the little girls, because Jason won’t get home from Arkansas until after I need to leave. It will work for Mary; she’s been excellent at her brothers’ all-day appointments since birth. Callie, on the other hand, would prefer to scale the walls — and she will try! The reward for making it this far will be a trip to the Denver Zoo after the boys’ infusions.

I will get home on Wednesday with the kids, and we’ll spend a day and a half together as a family. On Friday, Chance will leave for an important football camp in North Dakota. This time, we’re sending him alone, dropping him off at the airport, and trusting football coaches we’ve never met to pick him up and get him safely to camp and back to the airport.

Neither Jason nor I can attend because, on Saturday, we are hosting a shower for Lexi and her fiancé, who are getting married in August.

We will have to take a deep breath that night, because Jason is taking Rowen and Charlie to the Muscular Dystrophy Association Summer Camp in Iowa the following day. Before that, I must find time to do laundry and pack their things.

I’ll pick them up the following Friday. That same day, Jason will fly to Florida for a panel presentation at the Parent Project Muscular Dystrophy annual conference. To keep things interesting, Mary also starts state softball that day.

We will finish this crazy part of summer and be home for a Jason and Betty Vertin family favorite: the Fourth of July. That celebration with family and friends is our finish line. I know there will be tears, muttered curse words, arguments, lack of sleep, and stress-induced everything in the days beforehand, especially for Jason and me.

It seems impossible to accomplish everything that needs to be done in the next few weeks, but we don’t want to miss any of our kids’ events. So, just like we’ve done with everything DMD-related, we will take things one day at a time, together.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


Leave a comment

Fill in the required fields to post. Your email address will not be published.