Waking up on Christmas Eve made me scared and anxious

The Christmas decorations are down and tucked into storage for another year. The house is clean, the counters are clear of the holiday sweets, and our routine is again in sync.

However, this holiday season has left lingering fears and sadness quivering in my heart. I share seven children with my husband, Jason: Lexi, 23, Max, 19, Chance, 17, Rowen, 15, Charlie, 13, Mary, 10, and Callie, 2. But I’m more than their mom; I’m also a caregiver to three of our sons, Max, Rowen, and Charlie, who are living with Duchenne muscular dystrophy (DMD).

Lexi and her husband came home for Christmas the night before Christmas Eve. That’s my favorite thing about holidays — having all my kids sleeping under one roof — and this year was no different.

My kids spent Christmas Eve playing board games while Jason and I made soup and rolls. We then went to Mass and enjoyed dinner. It was a lighthearted night, and everyone went to sleep smiling and excited for Christmas morning.

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An unexpected surge of fear

Sleep didn’t last long for me. I woke up suddenly, feeling anxious with my heart beating fast. One thought was running through my mind, and I haven’t even been able to vocalize it — until now, in writing.

I woke up scared because I thought that this Christmas could be the last one when Charlie is able to walk. It shook me. I’m not sure if I was dreaming before I woke up, but I felt as if Charlie’s loss had already happened, and my grief was overwhelming.

I fell back asleep that night and, the next day, enjoyed Christmas with my family. The fear has remained, however, and my hopes that it would fade haven’t come true.

Since Charlie, Rowen, and Max were diagnosed with Duchenne, I’ve tried to live in the present, never wanting to borrow tomorrow’s trouble today. Charlie will be the last of my three DMD sons to lose ambulation. I’ve thought about that, especially during my tough moments as a caregiver to two sons who no longer walk or bear weight. I wonder how hard it’ll be when all three need me that way.

I’ve often brushed off my concerns, telling myself that Charlie’s inability to walk could be years down the road. But the reality is that it’s not that far away anymore. He turns 14 this month, and he starts high school in the fall. Although he walks at home, he prefers to use his wheelchair all the time outside the house.

Beyond his age, I see other clues suggesting that his ambulation will soon be lost. His balance isn’t what it used to be, for instance. At one time, he could lift his foot off the ground and put it through a pants leg without holding on to anything; now he leans against me or the wall or sits to do it. Charlie is also less strong when standing than he used to be. I see it in his face when young Callie hugs him or playfully pushes against him: He’s afraid he’ll fall.

That’s what I fear, too. From the moment I woke up Christmas morning, fearing this Christmas would be Charlie’s last on his feet, I was scared he’d fall. Max and Rowen both lost ambulation after a fall that caused a broken leg. Perhaps it’s silly or wouldn’t make a difference, but I hope that Charlie doesn’t break a leg that causes him to stop walking. For his sake and mine, I think it’d be better if he just woke up one day and couldn’t walk, avoiding the trauma of falling and living in a cast or facing surgery.

I wish I hadn’t realized that Charlie’s walking days could be dwindling. I felt better ignoring the fact. I’m worried about how it’ll happen and how he’ll deal with it. I wish I could protect my children from many things, and this loss is one of them.

Once Max and Rowen could no longer walk, their lives changed. They’ve done well, but their life was not easier. I didn’t want that for them, and I don’t want it for Charlie. I don’t like it for me, either. It’s a hard change, and I’ve already done it twice.

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.