Page 11 of Tell Me I'm Enough

She lightly squeezes my hand and tries to smile.

I hate this. I hate what this disease has swept in and taken from her, from us. I barely recognize her anymore. She’s a completely different person than she was two years ago.

They told us that after ALS is diagnosed, patients usually have two to five years left. Why couldn’t she get five? Why couldn’t she get four? Dammit…why couldn’t she just have gotten more?

I know this is it. We all know this is it. It won’t be long. Everything inside her is shutting down. If it’s not today, then it will be in the next couple of days.

I can’t do this. I can’t stand watching it happen. I can’t wrap my head around any of it.

Whymymom?

I still haven’t accepted it. Even after all this time, after years of watching her get worse.

The worst part is knowing she understands it all. She’s fully in there. Her brain works perfectly. It’s her body that’s failing her.

I know she knows how much this is affecting me. I can see it in her eyes. It’s like she’s pleading with me to be okay, even when that’s impossible. Becauseshe’snot okay. So how can I be?

She raises a shaky hand to my face, and I take it, holding it there so she doesn’t have to use any more strength.

“I…love you.”

“Shhh, Mom. This isn’t goodbye yet.”

I know it’s selfish, but I just need a little more time. Then maybe I can accept all of this.

I don’t think I’m going to get that, though. Not with how weak she’s getting. Not with how fast the end is coming.

We stay in the room all day with her, and eventually, I get up on the bed and wrap myself around her, needing to be closer to her. I don’t even move when the nurse comes in for vitals and meds, or when my dad tells me to get up and stop acting like this.

“You can’t hold her here.”

But I can try.I can try, can’t I?

The sun is going down, and I’ve barely eaten today. I can’t pull myself away from this room. I’ve found every reason to stay near her. I’ve been cleaning, feeding her, making her comfortable, trying to make her smile, reading her favorite book to her, anything to keep her here for a little while longer.

Something in me knows this is the end, even if I won’t let myself think about it for too long or say it out loud.

I kneel down beside the bed and point out of the window at the sunset. It’s beautiful, probably the most beautiful sunset I’ve ever seen come through these windows. The whole sky is pink, glowing brighter than normal, turning everything into a glow of soft pink and orange shades.

She turns her head slowly and smiles. I see a tear slip from her eye, and I quickly wipe it. Her breathing is so slow, even with the oxygen up as high as it can go.

“It looks like you out there,” I tell her.

My dad is behind us, pacing the room. His normal, annoyed expression is a little softened today.

She taps my hand lightly, and I look down at her as she mouthsI love youto me.

I shake my head. “I love you too, Mom…but it’s not time yet. Just a little longer, okay?”

“That’s not how this works, son,” Dad says, stopping at the end of the bed.

I feel my face getting tight, but I don’t look up at him. I hate that he can’t just let me feel things. He wants to box everything up, like that makes you more of a man or something. I think it makes him pathetic. And I don’t want to be pathetic like him, never showing people that I care or have feelings.

“Proud…of you,” she breathes out.

The sound of her struggling breaks my heart. It feels like she’s using her last breaths on me, and I hate that thought, hate that she knows, hate that I can’t do anything to stop it.

What am I supposed to do without my mom? Without the one person in the world who truly sees me. Who never told me to change. Who always made me feel like I was enough…just as I was.