Monday, October 27, 2014

Overwhelmed, under the covers...

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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