The life I had is gone. The life I thought I was going to have will never happen.
When Luther got sick, I questioned whether I'd be able to live up to this illness.
Tonight, I don't know if I can.
Tomorrow, I will, but tonight, I don't know what to say, what to do to make this any better. How do I make Luther feel better?
I got in to bed with Luther tonight, his little twin hospital bed and put my arms around him. I started to cry and then realized he couldn't turn over to face me.
He couldn't even reach down to touch my hand so I had to stop crying so he wouldn't feel any worse.
I get it, I understand that aren't any guarantees. I know there are people worse off than us. The world doesn't stop because Luther's sick.
We have a zillion decisions to make. Some are financial. Some are very personal. Some we can't make alone and some we don't want to share. Much of this hinges on the future -- a future that is cloudy and uncertain. A future I want to be bright and happy and full of things crossed of the bucket list. How do we balance financial stuff and bucket lists?
Plus I can't cook. That's been on my mind. How do I keep Luther fat, staving off more muscle degeneration if I can't figure out how to menu plan. Popcorn for dinner is ok with me. It's like sudoku or quantum physics. My fridge becomes a big black hole. I've been trying to make slow cooker chicken and dumplings for a week but I have to time it just right to be home an hour before it's done so I can throw in the dumplings. Just typing that made my brain freeze.
That was a stupid sidebar, I'm trying to take my brain off this emotional tsunami. Ugh.
What I realize the most is how much my life is changing. How much I have to change. How much I have to take on in order to create a good life for Luther. Tonight I bugged him, I nagged him, I brought up some really tough issues. Stuff we are both responsible for but I put it on him. It wasn't fair but I did it out of being scared, feeling insecure.
I think it's time to get under the covers. Just for tonight. Pull them over my head and hope to keep the ALS demons at bay.
Tomorrow's a new day.
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