My 3-year-old is realizing her older brothers with DMD are different
Callie, my youngest, is already starting to worry about her brothers' health
“Mommy, hold me. Mommy, hold me.” These were the words I heard repeatedly from my 3-year-old daughter, Callie, during the four days we spent in the neuromuscular clinic with her older brothers last week.
It wasn’t normal for her to want to be held. I’ve never traveled with a stroller for her because she prefers to ride on the footrests of her brothers’ power wheelchairs. Max, 19, Rowen, 16, and Charlie, 14, are all living with Duchenne muscular dystrophy (DMD) and regularly give her rides wherever we go.
But last week, she wanted to be carried and held by me or my husband. She would cry when we put her down. The strange thing is that right up until we entered the hospital, and as soon as we left it, she would walk or ride with her brothers. My husband said that perhaps she was afraid of the hospital. At first, I thought he was right. She’d watched her brothers get poked for blood draws and IVs, and maybe she felt that someone would do the same to her.
However, as the week passed and we returned home, she said a few things that made me realize she was figuring out that her brothers weren’t the same as other people — including her. Was it the enormity of this realization that was causing her fear?
‘Something is wrong with the boys’
We had to travel from our home in Nebraska to Denver for clinic appointments with Max, Rowen, and Charlie, and, because it was spring break, we brought our youngest daughters, Mary, 10, and Callie. It had been six months since Callie last went to the clinic, and at that point, she was only 2. Her awareness and understanding of the world around her have matured.
When Callie was born, Rowen had already stopped walking. She has never known Rowen out of his wheelchair. Max stopped walking before she turned 2, so I’m sure she doesn’t remember him on his feet. Charlie is ambulatory but uses his wheelchair for school and long distances.
Her first three years of life have been centered around family, and Duchenne is ever-present in ours. The condition has been a part of her life since she was born. It’s the only way she’s known Max, Rowen, and Charlie. Suddenly, however, she seems to be noticing their differences.
One night last week, Callie, Mary, and I were sitting in the hotel after a clinic day. Callie said, “Charlie walks like us. Max and Rowen don’t walk.”
The statement spurred a simple conversation in which I explained Duchenne to her like I did with her brothers when they were young: “That’s right. The boys have special muscles that get tired, and that makes it hard to walk. The chairs help them get around.”
She accepted my explanation and didn’t ask anything else.
A day or so later, when we got home, our son Chance, 17, who had stayed back for baseball practice, was very excited to see Callie. When he greeted her, she said, “Something is wrong with the boys. They had to see all the doctors.”
That’s the comment that got me. I’m tearing up as I share it. It kills me that, at age 3, Callie is already worried about Max, Rowen, and Charlie. She will carry this knowledge with her for the rest of her life. Its weight will get heavier as she gets older and understands more.
I have seen how Callie’s healthy siblings — Mary, Chance, and Lexi, 23 — have been affected by the awareness of what Duchenne is doing to their brothers. That knowledge is like a knife, whittling away little pieces of their innocence and childhood. And its wielder, Duchenne, works far too quickly.
This experience has made my children resilient and brave, but it costs too much. They grew up too fast. I wasn’t ready for Callie to start that process yet.
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.
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