My Heart Is My Most Flexible Muscle
Motherhood was not something I was always sure I wanted. The idea of motherhood scared me. I didn’t think I had what it took. When I think of the word mother, I think of love — and I feared I didn’t have enough to give.
That changed the moment I held my firstborn in my arms. I could feel the swell in my heart, and it grew with love. With every additional child — I now have seven — I could feel more love grow.
Motherhood is beautiful, but it’s full of heartache as well. Each experience, whether fantastic or challenging, has affected my heart. It is my most flexible muscle.
I got my first dose of that heartache when three of my children were diagnosed with Duchenne muscular dystrophy in 2010.
Diagnosis, as a season, was very hard for me. I felt gutted when the doctor first explained to me what the disease would do to my beautiful oldest son, Max, who was 4 at the time. The day he was diagnosed, I held him against my chest and sobbed. In a matter of minutes at a doctor’s office, my world capsized.
I walked into that office with a perfectly healthy son and walked out with one who would succumb to a disease I hadn’t even known about. There was a strong possibility that my sons at home would also face the same future.
During that period of tribulation, I realized how flexible the human heart is. As I sobbed while holding my son against my chest, my heart felt like it would explode from a fiery mixture of fierce, protective love and fear-stricken grief.
It wasn’t long before we visited neuromuscular specialists, had discussions about corticosteroids and clinical trials, came home with prescriptions for ankle and foot orthotics (AFOs), and began a home-stretching regimen.
Much like the AFOs and the stretching program helped expand tight muscles, my heart continued to expand. As my sons began to experience new things to help relieve symptoms and prolong their lives, my heart began to feel and hold on to things it had never lived through.
While the boys began to use their weak muscles and scar tissue began to form, a toughness developed within my heart. It came from one too many blood draws that made the boys cry and beg me not to continue. Yet Mom said it had to happen.
When peers would tease the boys for needing a stroller in kindergarten, my heart would shield itself from the intense pain of seeing my children’s hearts break. It made me stronger, for my boys and me.
As Duchenne has progressed through my sons’ bodies, the range of my heart also has expanded. In the beginning, there was so much fear and grief. I didn’t know what I was doing or what I needed to do for my sons. I was afraid that when they needed me most, I would fail them.
Yet as the years passed, I learned more about the disease and how to help them. When we had our first significant trial after my middle son broke his leg, I knew what to do: I managed it. I learned to find joy again. I learned to laugh and to celebrate, and to be proud!
My heart likes to show muscle when the boys do something successfully, which we were told would never happen. For example, my oldest son now has a summer job.
The heart muscle likes to flex when we start to dream about the future again. At diagnosis, we were told that the boys would need help with all of their activities of daily living as teenagers, and that they would die in their early 20s. We’ve got two teenage boys now, and while it hasn’t been easy or without setbacks, they are navigating the world pretty well with minimal assistance. We are starting to talk about college with our oldest son.
In the Duchenne community, we can’t help but talk about muscles. I wanted to use this column to shine a little light on our heart muscle and all the wonders it is capable of. In my opinion, the heart is our most flexible muscle.
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.
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