Every week, we try to organize chaos in our family of 9
An early bit of DMD advice told us, 'Welcome to the life you never expected'
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What’s a typical week as a caregiver of three sons with Duchenne muscular dystrophy (DMD) like? As a primary caregiver to Max, 18, Rowen, 15, and Charlie, 13, my honest answer is that I wish I knew! There is no typical week.
I also have four children who don’t have DMD: Lexi, 23, Chance, 17, Mary, 10, and Callie, 2. Life with seven children is always busy. My best attempt at describing our life together is that it’s organized chaos.
My week starts on Friday after work. That’s when I go into mom mode. I make plans to get the kids to all of their activities, atop my grocery shopping and meal prep to get us through until the next Friday.
Friday night, Chance has football games that we attend. We have Saturday and Sunday (fill this with any activity) because there’s always something happening among our seven kids, be it choir, softball, fundraisers, family time, or something else.
From task to task, all full of feeling
Last Friday, as we drove two-plus hours for a football game, I listened to a voicemail from the cardiology department at our neuromuscular clinic. They needed to send us a heart monitor for our son. We had to call back and ask which son, as the same cardiologist sees all three of my kids with DMD.
The office meant Rowen, we discovered. The cardiologist ordered the heart monitor to follow up on another monitor Rowen had worn three months ago. Neither Jason, my husband, nor I remembered that there’d be a follow-up, but we rolled with the new information. The monitor should arrive by FedEx any day now.
The next day, my oldest daughter, Lexi, and I attended a dinner party sponsored by Cure Duchenne. We’re Nebraskans, and this meeting was in Omaha, two and a half hours away from me, so I’d booked a hotel and looked forward to a rare getaway. It was a lovely night.
However, the meeting had an emotional impact that took me by surprise. I’ve often worried about the carrier status of all three of my daughters. Lexi talked about it openly during our dinner, and hearing her speak about the testing hit me in a new way. For years, the process of finding out her status seemed far away. Now, however, she’s married and wants to have children. I can only pray she’s not a carrier. I don’t want that for her.
After dinner, Lexi drove home to her husband — they live only an hour from Omaha — and I stayed at the hotel alone for coveted time to myself. I expected a great night’s sleep. Instead, after the fresh dinner conversations about clinical trials, carrier status, and our sons’ futures, I tossed and turned all night.
At one point, I experienced a panic attack, worried that I’d made wrong decisions about our family’s choice of clinical trials. It was a restless night, not at all what I’d planned.
That should’ve been enough feelings and stress for one week. But when I got home Sunday from my sleepless night and several hours of softball with Mary at her tournament, Rowen told me he couldn’t feel his leg.
I examined him and did some research. Nothing alarming came up. Another day later, however, he still couldn’t feel his leg, so he asked us to make an appointment to see our doctor. We don’t have answers yet, but we hope to have them soon.
After my sons were diagnosed in 2010, I read a quote at a DMD conference that said, “Welcome to the life you never expected.” Since then, I’ve lived many, many weeks during my journey as a DMD mom and caregiver, and it has often felt the same: Welcome to the week you never expected. But knowing that I need to expect the unexpected helps me feel ready to be flexible for the next thing in my life’s organized chaos.
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.
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