June is a quiet month here in rural Nebraska. Most days, only neighbors drive on the street outside our home, and you can hear the wind moving through the plains. That may sound boring to some of you from the big cities, but here it is supposed to be relaxing and serene.
My children have been on their summer vacation for a month already and I had been looking forward to things slowing down, as they usually do. But the first month of summer break has been filled with trips and activities that have just about broken me, and I was heading toward burnout. I wasn’t sleeping well and was skipping showers, losing focus, and snapping at the kids. Clearly it wasn’t the best version of myself.
I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie, who have Duchenne muscular dystrophy (DMD), all had overnight clinical trial appointments in Denver. The next week, Rowen and Charlie had an appointment with a new doctor we’re adding to their care team. Jason handled one set of appointments, and I handled the other, but the drive is exhausting when we have to make it often.
Our youngest is taking swimming lessons and going to dance classes. Mary is playing travel softball and practicing with a travel basketball team that will start competing as soon as softball ends. Rowen is playing in a baseball league that meets once a week, and Chance is on a college summer team that is playing 50 games in 60 days. On top of all that, both Max and Chance have decided to transfer colleges next fall. Oh, we are also house shopping.
I continually strive to balance caregiving and self-care, but the constant activity and not having enough time at home to decompress have been too much. I was so busy managing schedules, diagnoses, and appointments while trying to squeeze in time to run the dishwasher and fold laundry that I forgot to have fun. I felt it coming on early last week, and missed a baseball game. The next day, I recruited my mother-in-law to take Callie to her swimming lesson and cover one of my church responsibilities.
These breaks helped, but I still needed something to recharge and refresh me so I could tackle the next few weeks of summer break. Enter the Savannah Bananas, a popular exhibition baseball team.
We already had tickets to the game, and even though we were tired, Jason and I decided to give the kids that experience. Games like that don’t come to Nebraska very often, after all, and everything aligned. We managed to exchange our tickets so our entire family could sit together in handicap seating. We watched the game, sang along, laughed, and enjoyed each other’s company. There was nowhere to rush off to and no one we needed to pick up. It was just us, all together.
The next day, I felt so light and happy! As I reflected on what had been different, it was the having fun part. That was an important lesson for me, and from here on out, I plan to look for more ways we can experience that kind of lightheartedness as a family.
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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