Little Deaths

Living inside a diagnosis that doesn't stay still.

My son called out to me early one morning last week. Since he typically calls or texts when he needs something, I immediately knew something was wrong.

I heard the fear in his voice before I even realized I was running to his room.

I got to his room, and there he was, flat on his back, staring at the ceiling. He was trying to move just enough to make eye contact with me, but his body wouldn’t cooperate. His head had rolled off his pillow, and he couldn’t lift it back up. He couldn’t roll over to reach his phone or his smartwatch, which were on the charger on the nightstand right next to him. All he had was his voice, which is also getting weaker these days.

Thank God I heard him.

I was gutted. Internally, I could feel my own fear rising, but I pushed it down. That moment was about him, not about what I was feeling. So I kept my face steady and my voice calm, and I helped him.

Later, once he was situated and had a chance to express how that made him feel, I retreated to my room and cried. I called my husband. I called my sister. I cried. I cussed out Duchenne. My husband and sister cussed out Duchenne. Then, I got back to doing all of the daily tasks that don’t wait for you to feel more regulated emotionally.

What We Call “Little Deaths”

In the Duchenne world, the phrase “little deaths” is used by parents and caregivers exactly for moments like this one.

I admit that that phrase sounds dramatic. But it’s not if you’ve ever lived it. Duchenne muscular dystrophy is progressive. That means it doesn’t stay the same. It takes a little more each year, sometimes each month. Climbing stairs. Walking. Lifting your arms. Rolling over in bed. Each one of those is a small piece of his independence. Most of the time, once it’s gone, it’s gone for good, but not always right away. Sometimes it’s just a warning shot, a sign that the real change is coming, just not quite yet. You never know which one you’re looking at until time tells you.

So we call them little deaths, because that’s what they feel like. They’re a string of small losses, spread out over years, each one asking you to grieve all over again.

I’ve already watched my son stop walking. That was its own little death, several years ago. We got through it, and we adjusted. We have found a new normal.

Now I’m watching him lose the ability to hug me.

His arms don’t lift the way they used to. What used to be an easy, automatic thing between a mother and her son now takes effort, timing, and sometimes help from me to make it happen. I’m watching it happen in real time, a little more each week.

The Question Nobody Can Answer

Here’s the part that sits with me the longest, longer than the moment itself. I don’t know if what happened that morning is going to stick.

Was that morning just one bad night? Maybe he was extra tired. Maybe he’d overdone it the day before, and his body was worn out. Or was that morning the line? The moment his body quietly decided, without asking him, that rolling over on his own is no longer something it does.

With Duchenne, you don’t get a warning label. You don’t get a schedule that says which ability goes next or when. You just wake up one day, and something that used to work doesn’t. And you’re left standing there trying to figure out if this is a bad day or a new reality.

That not knowing is its own kind of exhausting. It sometimes feels like a waiting room without chairs, no company, no distractions, and no end time.

And if that wasn’t hard enough, it’s not just that we don’t know when his abilities will go. It’s that we can’t really plan for it either.

Sure, we’ve made adjustments over the years. We’ve done what we could, when we could. But until something actually changes, we have to wait.

We wait because if we had planned for all of this years ago, the technology would already be outdated. And because you can’t get most services or devices until you can prove the function is already gone.

So we wait. We’ve made peace with that part. Well, mostly. What’s hardest isn’t the waiting itself. It’s reminding myself, over and over and over again, to wait patiently.

That’s a lot to carry at once. Not knowing if a loss is permanent. Not being able to get ahead of it even if we tried. All of that was already sitting on my chest the morning I found him staring at the ceiling, trying to be brave for me.

That Day, I Let Myself Feel It

I didn’t reach for hope right away. I sat in the grief. I sat in the fear and the anger. I wanted to scream at how unfair the whole thing is. I didn’t want to be polite or uplifting either. I didn’t want to search for the silver lining in it all. I needed just to be angry, and sad, and human.

That part matters as much as the hope does. I don’t believe in pretending everything is fine when it isn’t. Some days are simply hard, and pretending otherwise doesn’t help my son, and it doesn’t help me.

So I let myself feel it, fully and for as long as I needed to. I took solace in my husband knowing exactly how I was feeling even if I didn’t have to explain. I felt better when my sister and I creatively cussed out Duchenne like it was an aggressive driver who needed to be taught a verbal lesson.

Today, Tomorrow, and the Space Between

Tomorrow, I’ll do the practical thing. I’ll go buy the equipment we knew we’d need somewhere down the road.

Tomorrow, I’ll cling to hope again. It might be small. It might be nothing more than a good laugh with my son or a peaceful moment where nothing hurts. But I’ll find it, because that’s what I do, and because looking for the light doesn’t mean I’m ignoring the dark.

Tomorrow isn’t here yet, though.

Today, I’m still standing in the little death of a morning where my son couldn’t lift his own head. Today, I’m sitting with the fear in my son’s eyes where he didn’t know if he would ever lift his head again. Today, I’m letting myself feel whatever it is that needs to be felt, without rushing myself past it.

That’s the truth of this life. Grief and hope don’t take turns waiting politely in line. They show up together, tangled up in the same morning, the same room, the same breath. Some days you get both at once and you just have to let them sit there, side by side, until you’re ready to move.

Tomorrow’s another day. Today, this is the one I’ve got.