Staying Busy Sometimes Numbs Me to the Realities of Duchenne MD

There is a busyness to parenting. Children of all ages need their parents for many reasons. And perhaps because my husband, Jason, and I have seven children ranging from 7 months to 21 years old, we feel every ounce of that busyness.

I read memes and articles about the glorification of staying busy. My family is guilty of this, sometimes wearing it like a badge for winning something.

Honestly, though, I don’t like to be busy constantly. I don’t want to be rushed, and I enjoy taking the time to savor a glass of wine, read a good book, write in my journal, and most significantly, tinker in my garden. We also live in the Midwest, where the pace of living is slower than in other parts of the U.S. And yet, we are busy all the time.

I realize that having three children with Duchenne muscular dystrophy (DMD) adds to our schedule. And I’m not talking only about the medical and therapy appointments, though there are plenty, trust me. I’m also including the time we spend caring for our sons. Assisting them with bathing, toileting, and taking medications all take up part of the day. Add a couple of extracurricular activities, and it starts to feel like there’s something going on at every hour of the day.

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Finding time to pause and reflect

One way I try to slow down amid the demands of our schedule and nurture my faith at the same time is to participate in weekly Eucharistic adoration at my church. I sit in the chapel for an hour with the Eucharist, which as a Catholic I believe is Jesus. Therefore, I often refer to this hour each week as my date with Jesus.

For years I have had an hour every Monday. I am part of a network of adorers. The person before me can’t leave until I get there, and I can’t leave until the person after me comes. I am held accountable, and no matter the demands of my schedule, I go. In the last year, I have signed up for two more hours because I feel like the quiet hour is the fuel I desperately need.

I was sitting in one of my hours last week following a day of back-to-school meetings for my middle son with DMD, Rowen. It’s hard for me to do back-to-school sessions because it often feels like we spend hours discussing all the things he can’t do and all the things that are hard for him, and are constantly recreating a school plan that works for him. It saddens me, as it’s the opposite of how we prepare to send our typically developing kids back to school.

I had not been at adoration long when tears stung my eyes. It was the first time I had stopped moving, caring, meeting, and talking all day. The few minutes of quiet I had experienced at that point were enough for my heart and head to catch up with the rest of me, and the feelings and grief bubbled over.

I was surprised at the way my body had deceived me. I had been owning my busy schedule all day, and rather than realize I was overwhelmed and tired, I was applauding myself for going to all the places and doing all the things, even though they were taking everything I had to give. Staying busy had made me numb. I had spent the day going through the motions.

And about as fast as the tears had sprung up, so did my realization that I sometimes use busyness like an anesthetic. I can easily stay busy — too busy to recognize when life is getting difficult.

As a mother, DMD has been hard on me. I try to be joyful and grateful, but there are seasons when it’s challenging to do that. It’s also hard to deal with the reality of what DMD is doing to my sons. I don’t appreciate watching the disease progress. I realized I was guilty of using my busyness to numb me from the depths of heartache I was experiencing.

It made me very thankful for that quiet hour. I was being sincere when I said I needed it. I have to deal with my feelings and learn to take time for myself to be the best mom and caregiver possible. I like how the adoration program holds me accountable for my time and emotions. It makes me better on this extraordinary parenting journey.

Note: Muscular Dystrophy News 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.