Sometimes living with Duchenne is simply too hard
Between caregiving and parenting, I often have nothing left over
I love to read, but finding time to sit down with a good book can be challenging in my busy house. As a mom to seven and a primary caregiver to my three sons with Duchenne muscular dystrophy (DMD), quiet time is often interrupted by my children.
Occasionally, however, I find a book I can’t put down and will read late into the night. It’s probably not in my best interest, as my days never start later or get quieter or less busy. However, I recently read the book “Montana 1948” by Larry Watson. I enjoyed and would recommend it, especially if you appreciated the drama series “Yellowstone.”
At the story’s beginning, the narrator describes the harshness of the land and the weather at his home in northeast Montana: “Life was simply too hard, and so much of your attention and energy went into keeping not only yourself but also your family, your crops, and your cattle alive, that nothing was left over.”
I don’t have crops or cattle, of course, but that line resonated with me. I thought to myself, yes, that is living with Duchenne. Life is hard, and so much of my attention goes toward caring for my family that it often feels like I have nothing left over.
I do take time for things unrelated to Duchenne, but even then, the disease touches it all. I always have to consider caregiving, the boys’ health, and accessibility. Who will care for the boys if I need to be somewhere? Are they physically up for the activities we have planned? Can they get to where we’re going?
And it’s more than caregiving. Some days, it’s carrying the weight of watching three of my children battle a rare, progressive, fatal disease. For example, I was at the neuromuscular clinic last week with my three sons with DMD. My oldest, Max, turned 18 in November — something we celebrated and are thankful for. But turning 18 with a chronic disease means setting up a medical power of attorney. This was new for us.
Max selected my husband and I to speak on his behalf, should he become unable to do so himself, and so the social worker recommended we talk to Max about his end-of-life wishes. She kept speaking, but I immediately retreated into my imagination where I saw my son in the hospital at the end of his life. My husband and I were scared and sad and making impossible decisions.
I nodded along, but I don’t think I heard anything else the social worker said.
Duchenne is more than enough
That is why the quote about life being “simply too hard” resonated with me. Max is the one who should plan on outliving me and his dad. He should need us to sign some paper that gives him authority at the end of our lives.
It’s unfair, and it absorbs a lot of me. I’m sure this affects Duchenne parents differently, but for me, it means I don’t have much outside of caregiving, parenting, and family life. For instance, all the friends I once had are acquaintances now. Of course, I have friendly neighbors, and there’s always someone to chat with in the pickup line at school or in the bleachers at a ball game. But I don’t have the energy or bandwidth it takes to be a friend.
I used to beat myself up for this; I never thought I was enough. The truth is Duchenne is enough for anyone.
It’s worrying about my sons, wondering what terrible thing the disease is doing inside their bodies that I can’t see. It’s grieving with them, and for them, every time they have a setback (a fall that breaks their leg) or lose another ability (they can no longer reach their heads to wash their hair independently). It’s constant fear and grief, and it’s exhausting.
And when I think I’m doing OK and have a little extra I could give, we have medical appointments or a difficult conversation.
With Duchenne, there’s always something.
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