As a Duchenne mom, I know I can do hard things

The seasons are changing in central Nebraska. The leaves have turned yellow and orange, a beautiful contrast littered across the green lawns and familiar streets surrounding my home. The mornings are brisk, and I’ve finally pulled out my warmer sweaters and fuzzy socks. I’ve been drinking pumpkin spice coffee for weeks!

However, the weather here in the Midwest is inconsistent and often as hard to predict as Duchenne muscular dystrophy (DMD). I speak from experience, having lived in Nebraska since I was a child and now being a mother to three sons living with DMD: Max, 18, Rowen, 15, and Charlie, 13.

Thus, there are days when fall’s cozy feeling doesn’t last long because Nebraska acts out, or Duchenne throws a wrench in my pumpkin spice delusions of an easy life. Monday was one of those days.

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I left the window open in my room Sunday night, expecting a cool breeze to flow through my curtains all night. Instead, I woke up sweating a little after midnight. The night was warm, and I couldn’t fall back asleep for hours.

Once I did fall asleep, it was a heavy sleep. When my alarm went off, I thought it was a pizza timer; I must have been dreaming about pizza! I was snuggled in and comfy. How I love to wake up on a fall morning.

I could hear my husband making coffee in the kitchen, but I also listened to an impressive exhale of cuss words as he tried to maneuver without hurting his back. He was defeated. My husband hurt his back last week while helping me with a project at home. Late Sunday, however, just as his back was healing, he tried to lift and transfer our son Rowen into the bathroom and hurt it even worse.

Hearing my husband in the kitchen jolted me from my comfortable spot between my blankets. I suddenly remembered I had to get myself and the kids ready for school and work without my husband’s help.

Taking on the task

Getting three young men with Duchenne ready for school in under an hour is possible. However, that normally requires devoted effort by two people; it can’t involve getting yourself or other children ready at the same time. I have five children living at home full time: Rowen and Charlie, plus Chance, 17, Mary, 10, and Callie, 2. Sometimes my son Max is here from college, as was the case Monday morning.

When I woke up that day, I didn’t remember that I’d be the only caregiver readying the boys. I pushed the snooze button too many times. If I’m the only one getting the boys ready in the mornings, I need to wake up much earlier.

Therefore, as you can imagine, I was scrambling. I was sweating and kept glancing at the clock to check the time. I had to text my boss and two co-workers to let them know I’d be late. I texted my mother-in-law to come over and help, and I got my son without DMD, Chance, out of bed early to help, as well. I got the kids to school and made it to work in my classroom just as the bell rang.

At one point that morning, I caught myself saying, “You can do hard things.”

I laughed because the elementary school where I work has signs that say the same thing all over the building.

I can do hard things. It’s a life lesson that’s all too easy to forget when you’re in the middle of something hard. I was sweating and out of breath as I was getting my sons ready.

Each is heavy, and getting them dressed and situated in their wheelchairs takes some muscle. I was going fast to ensure we were all on time for our days. I was swearing under my breath a little as the day’s difficulty seemed to be mounting by the minute.

However, once I told myself, “Betty, you can do hard things,” my morning was suddenly manageable.

I’m a Duchenne mom, and a good one at that. I can do this Duchenne life well because I can do hard things!

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.