Monday, February 4, 2013

the story

Our reverand said, a while back, that even if John continues to live and do well, my sadness is not a betrayal of him.  I am mourning the story we would  have made together.

Two weeks ago, John started having a hard time moving his left side.  It started small but moved fast.  He can barely lift his arm and his leg drags, catches on things, and generally gets in the way.

This weekend, I had different people talk with me about what will happen when he dies.  About being prepared for it- financially and functionally.

Today he got his MRI.  Wednesday we have clinic where we find out why these things are happening.  John's entire being is focused on it being only due to swelling that is left behind as the drugs work on the tumor.  My whole being is focused on not thinking about it.  He didn't hear when the NIH doc's said it was unlikely that he would get any of these things back.  His left side vision is so off, Sokka has started trying to steal from his dinner plate on his left side because John can't see him.  Crafty dog...

I have to help him into the shower, get his underwear and pants on, lift his left arm through his sleeve, help him down and up the steps outside.  He can't help with any of the little things going on as the kids careen through the house, so I find myself in constant motion...

My smile comes less often than it ever has before.  I am getting better at faking it for my kids, though.  I wonder about my life after he dies.  It is so hard to think about.  It messes me up so profoundly, thinking of my coming years without him.  I think I need to find another coach to date or marry so they have access to those types of resources, to that way of thinking.  But really, it isn't the coaching, it is him.  So I tried to reach out to his good friend.  I made suggestions of ways he could stay in touch, but he bristled at each one, saying that he would do things differently than I was suggesting.  It just made me realize I can't force familial relationships.  We never see him now, so why would that change after John is gone?

I don't want to date again.  I was never very good at it.  How can I expect to be better with three kids and all this damn cancer baggage?!

So I just stop thinking about it because I can't control that anyway.  And we have no idea how long John will stick around.  He is one hell of a stubborn bastard, so he could surprise us all.