Accepting that I’m sad

Sometimes, when you’re in the thick of it, all you can do is do…and keep doing.

You can’t feel. You can’t stop. There’s no time to slow down.

You just simply…continue on. Like, fight and flight both happening at the same time, both extremes somehow working together to just…help you survive.

Autopilot. Going through the physical motions necessary for survival.

I know I’ve said this, written it and whatever…but…2 of my kids literally almost died these last few weeks, and both of them required separate, back to back hospital stays in order to keep them from literally dying.

I know you probably think I’m exaggerating when I say this, but I’m not. All 3 of my boys have a genetic disorder similar to muscular dystrophy. And their respiratory muscles have taken an enormous hit these last few months.

My 7 year old could not speak more than 1 word at a time before becoming so short of breath that he couldn’t breathe, had to stop, had a coughing fit, and ended up throwing up because he couldn’t breathe.

One word.

He couldn’t walk to the bathroom for an entire week. I had to hold a hospital sized urinal for him about 20 times a day (thank you IV fluids) because all he could do was stand up…and even that, standing up, was enough to completely exhaust him.

My 17 month old couldn’t get his oxygen levels up above the 80s for a good 2 days. Even while being on oxygen.

Between the 2 of them, we spent just shy of 2 full weeks in the hospital, back to back. With zero nights in between.

Today was my first day back of normal. Of our normal routine. Of therapies and school and my husband going to work…it was like our day 1.

And it was that. The…. “normalcy” of our day to day routine, that allowed the immediate crisis to quiet down, and the feelings creep in.

I’ve been fighting the feelings. The emotions and thoughts and all of it. I didn’t have time. And it certainly wasn’t something I wanted to face.

But today, it really hit me.

I’m sad. And I’m scared.

This shit is real. It’s really real. It’s the most real thing I can think of.

And that is terrifying.

This is my reality. My kids could literally, actually die. I should have, but I didn’t see this coming. Yeah, I’m always preparing for the worst in the back of my head…but preparing for something in the abstract, and actually seeing it come to light are two very different things.

I don’t want to have to feel these things. Or experience them.

I’m sad. My body feels shut down, I feel basically incapable of going through the motions of life at this moment, and I am just soul alteringly, life changingly exhausted.

I don’t know how to process the past few weeks that we just had. Or even if I should.

But my body doesn’t feel good. Like, every cell that exists inside of me is just trying to run away, and take me with them.

I feel trapped, but I don’t know what by.

I’ve been pushing these thoughts and feelings and memories away for as long as I could. And today, I think it just hit me.

It hit me hard.

Maybe I’m not supposed to fight it. Maybe that will make it worse.

But accepting that I’m sad…that’s hard too. Feeling this hurts.

Tomorrow won’t be easy. I have to take my oldest son in for an emergency pulmonologist appointment over 2 hours away. They just called me about it today.

I don’t want to hear any more bad news.

But I know his lungs are in significantly worse shape than they were at his last appointment.

And I’m just not strong enough to hear the things that I know he will say.

My heart hurts.

I am tired.

And I am sad.