May is ALS Awareness Month. An estimated 30,000 Americans are living with ALS right now, and we still don’t know why. What we do know is what it takes — slowly, and without mercy. My grandma was diagnosed in 2004. She passed on April 10, 2007. This is for her.
The Christmas tree took up nearly half the living room, its branches brushing against you as you walked by, like it needed you to notice it. We put it up weeks before Christmas every year, always together, always the same routine. It was one of those traditions that never had to be discussed, it just happened.
A stuffed Rudolph sat somewhere near the bottom, tucked between presents or propped against the wall. Every time someone walked past, it would start to sing, Rudolph the Red-Nosed Reindeer, had a very shiny nose…
The song played so often it blended into everything else. It became part of the background — laughter, footsteps, wrapping paper, voices overlapping. At the time, it felt like it would always sound that way.
It used to be such a happy time.
On Christmas evening, we gathered for dinner before moving into the living room, where presents covered the floor so completely you had to step carefully just to cross it. My grandma would sit nearby, watching everything, ready to call someone out if they even joked about opening gifts early. She had that kind of presence — firm, playful, alive. I always stayed close, helping Papaw pass out presents, feeling like I had some small but important role in the whole thing.
I didn’t know those moments were already becoming something I would miss.
When things started to change, it didn’t feel like anything serious. It felt small. A kink in her neck. Something stiff. Something temporary.
Three years before she passed, she couldn’t hold her head up.
I wasn’t worried. I was a kid. To me, it was the kind of thing that happened when you slept wrong or pushed yourself too hard. Something you laughed off and waited out. I didn’t understand that something was already beginning, something none of us could stop.
She waited a month before going to the doctor. That was who she was — stubborn, independent, not one to make a big deal out of anything. When she finally went, they told her it was arthritis. They gave her a shot and sent her home.
Nothing changed.
Months passed, and her neck didn’t get better. It got worse. Then her voice started to shift. At the time, I didn’t have the words for it. I would have said it sounded robotic, maybe strained. Now I know it was something else entirely. It was fragile, like every word had to fight its way out.
She went from doctor to doctor after that. One said arthritis. Another said stroke. Each appointment came with a new guess, a new explanation, and still no real answers. Just more waiting. More uncertainty.
By the time her voice became difficult to understand, I started avoiding her calls. I didn’t want to ask her to repeat herself over and over. I didn’t want to sit in that discomfort.
Now, that’s one of the things I wish I could undo the most.
Eventually, she was sent to a neurologist. There were more tests, more scans, more waiting. When the results came back, they told my grandpa she had suffered a stroke.
For twelve hours, that was the truth we lived in.
Then it changed.
It wasn’t a stroke.
It was Amyotrophic Lateral Sclerosis.
I didn’t understand what that meant. I didn’t know anything about motor neurons or progression or timelines. All I could see was what was happening right in front of me — that her body was slowly stopping, piece by piece, like the connection between her and everything around her was fading.
By the time they had a name for it, it had already taken so much.
She passed away on April 10, 2007. Two days after Easter.
I remember exactly where I was when I found out. I was outside, running around the yard with my best friend and my dog, completely caught up in a game we had made up on the spot. We were laughing, chasing each other between the fire pit, the swings, the stairs to my clubhouse. It was one of those moments where nothing else existed.
Then my mom opened the gate.
“Carly, come inside. I need to talk to you.”
I asked if I could stay out a little longer. Just a few more minutes. I didn’t want to stop what we were doing.
“If you still feel like it after we talk, you can go back,” she said.
I went inside and sat down on the black sectional, grass still on my jeans, my heart not yet aware that anything had changed.
“Mamaw passed away this evening.”
Her voice was steady, but her eyes weren’t. They were heavy, like they were holding something she couldn’t quite say out loud. I had seen my mom upset before, but this felt different. Quieter. Deeper.
I didn’t cry.
I didn’t understand.
That would come later.
I never went back outside that night. And in a way, I never really went back to the version of things that existed before that moment.
After she was gone, everything shifted. Not all at once, but enough that you could feel it. My family started to drift. My parents divorced. The big gatherings became smaller, then less frequent, then something we had to plan instead of something that just happened.
Holidays changed the most. What used to feel full, loud, crowded, overlapping — became quieter. More spaced out. More aware of what wasn’t there anymore.
Now, years later, we still try. We gather when we can. We hold onto what’s left of those traditions, even when they feel different than they used to. Some holidays are better than others.
Still, nothing really disappears.
Sometimes, in the quiet moments, I can almost hear it again — the faint, tinny sound of that Rudolph singing from the corner of the room, like everything is still in its place.
Like it always was.
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