They say the third time is the charm. However, as a mom to three sons with Duchenne muscular dystrophy (DMD), I don’t find that to be the case.
I share seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have DMD. I consider myself a veteran parent; I’ve been at it for more than 25 years. I’ve been through the baby and toddler stages seven times, and I’ve parented through middle school, high school, and college.
The first time through, I had to figure it out as I went. The next couple of times, I did things differently based on my experience with my first, and I continue to fine-tune my parenting approach with each one as we go.
For the most part, I know what to expect and how to manage the things that surprise me. When it comes to parenting children with Duchenne, however, managing the surprises is more challenging. I know how to care for my sons, but preparing for the emotions that accompany their disease progression doesn’t get easier with experience.
I have learned how to provide care for new phases of disease progression: I can use the Hoyer lift and cough assists, transfer them, shower them, and help with toileting. I understand how to navigate the hospital and insurance systems that guide the medical care my sons receive. I can find and enroll them in a clinical trial. I have learned that as I go.
Still not prepared
When Max was diagnosed in 2010, that started a learning process that has continued like a roller coaster as he has grown into a young man. I know Duchenne. I can care for a young man living with Duchenne. I can even care for three young men living with Duchenne at the same time.
However, as my youngest son, Charlie, enters the final stage of walking, the experience of having gone through it with his older brothers has been more traumatizing than helpful.
Last week was a bad one for Charlie. He fell. Jason and I were just drifting off to sleep when we heard the sound a body makes when it hits the floor. That was followed by screams. Charlie yelled, and Rowen, who had also heard it, started to scream, “Charlie fell! Charlie fell!” as loudly as he could.
As I wrote those words, my heart rate sped up, and tears filled my eyes. I felt it in my stomach, and a heaviness settled in my chest, making it feel as though I couldn’t breathe.
We had all heard that sound before, and even thinking about it makes me feel like it just happened. I knew it could mean a broken bone, loss of ambulation, and worse — a broken bone might lead to fat embolism syndrome, a frightening and life-threatening possibility for someone with Duchenne.
Those thoughts didn’t need to run through my mind; they were felt deeply in the recesses of my memory. My thoughts, as I raced down the hallway to find Charlie on the floor in the bathroom, were, “Oh, my God, Charlie. Please be OK. Charlie, please be OK.”
I have lived through a fall that led to a broken leg and a loss of ambulation twice already — with both Max and Rowen. I don’t know how to explain it other than it’s traumatic stress. But it’s not post-traumatic because I keep reliving it. It feels like continuous stress.
Charlie doesn’t have many days left of walking. He could take his last step before this column publishes. Perhaps someday down the road, once he is done walking, I can focus on the fact that he didn’t get badly injured when he fell. I’m sure I’ll be thankful that he was able to walk for 15 years. It could have been less.
But right now, in the trenches with Charlie, helping him navigate this tremendous loss, I am not comforted by any of that. I am not prepared because I have already done it twice. I’m angry and grieving because this is the first time I’ve done it with Charlie.
The third time is not the charm for me.
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
The post When it comes to raising a child with DMD, the third time is not the charm appeared first on Muscular Dystrophy News.