In the wake of trauma, I’m finding joy in what I can give
Setting aside painful emotions to better care for my son and his mobility issues
The past week has been difficult. Our oldest son with Duchenne muscular dystrophy, Max, fell last week and hurt his leg. In the past several days, we’ve figured out how to dress him and help him in the shower and restroom. He was doing these tasks independently or with minimal assistance before his fall, but now that he can’t bear weight as his leg heals, we’re relearning it all.
Max is not our first son with Duchenne to go through a fall and have difficulty bearing weight; my 14-year-old son, Rowen, fell and broke his leg three years ago, so I thought I’d be prepared for it a second time. But my children are unique individuals with different strengths, weaknesses, and personalities. Helping Max is nothing like helping Rowen.
Falls are one of the scariest parts of Duchenne for me. It seems so unfair that the lives of my three sons with Duchenne can change in a second because of a fall. Every time, it’s like a loss-of-mobility alarm screeching in our ears. If one fall doesn’t take mobility from my son, the next one could. The end stages of frequent falling and a loss of ambulation are heartbreaking.
Part of me is angry, and part of me is sad and grieving. At the same time, I knew that a struggle for ambulation would happen eventually, and thus I feel my emotions should be in check. I experienced that injury and loss of ambulation with Rowen and lived through it, my thinking goes, and since he’s happy, my emotions should be under control.
My emotions are valid; I know it. But there is a truth flowing through the statements above. And as the days have passed, my feelings have given way to more practical concerns, like caring for him as he recovers from his injury and preparing for the next stage of ambulation.
I lean on something other than my understanding. Life with Duchenne is complicated and full of heartbreak; I’ll never understand it all. So I rely on my faith. And as I looked back through a journal I keep, I found the following note: “Her joy lay in what she could give.” That refers to sisters Mary and Martha from the Bible and Mary’s joy in washing the feet of Jesus because that was all she could offer.
Navigating this tough week since Max fell, I’ve had to force myself not to lead with my emotions because they interfere with my son’s care during this transition. As parents of children with a rare disease, we often must swallow our feelings or risk drowning in them. We put our kids first and feel the feelings later.
Therefore, I’m following Mary’s lead and finding joy in what I can give. Unfortunately, I can’t take the Duchenne from Max’s body — although if I had a superpower, it’d be to draw disease out of the human body with touch.
I take care of my son. I can be patient as he adjusts to needing Mom more. For a 17-year-old, needing a mom can be a little awkward; I can understand that and assure him we’ll figure out how to make it less uncomfortable.
I can ask other moms for advice. I can let Dad take charge of a few areas of care. I can explain to his siblings what’s happening. I can communicate with doctors and the school when it’s difficult for Max. I can care for my son. I’m thankful I have that. I’m also thankful that my husband works long hours so I can be my son’s primary caregiver.
I do find joy in what I can do. Of course, I’ll always wish I could do more to make his life easier or otherwise better. But I can help him: That’s where my joy lies, and that’s one emotion I can focus on during this time.
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Thanks Betty! I found that transitioning from walking to a chair full time was one of the hardest times in our journey with Duchenne. At 27 and 25 Ben and Sam are living full, productive lives. And like you, we walk by faith not by sight and we find joy if what we can do!