How it’s gonna be

Today I took 3 naps and got a few little things done.  Yesterday I had 2 doctors appointments, slept an hour each way for one of them and then came home and slept some more.  I was nauseous and just felt blah all over, but that's how it's been lately.

One of my appointments was with my liver specialist, Dr. Hupertz.  When going over my consistent symptoms and inability to do much of anything, I told her that I'm to the point where I'm bored out of my mind.  I want to do so much, but my body just won't let me.  She told me that was normal, and while sympathizing with me, she pretty much told me that this is how it's going to be.  This is progressing liver disease.  Frustrating, random, painful, exhausting.  This is my life.  This is how it's going to be until I get a new liver.

Then on my way out, Dr. Hupertz reminded me to call her after hours anytime I was beginning to show one of the things I know to look for, and to call 9-1-1 if I come up with a few major symptomatic events that I again know all too well to watch for.  (Most of which involve Life Flight, surgery, and all that good stuff.)  I told her not to worry - we were already good at being cautious, and anyways, my mom is way too scared to let something just slide by.  I was surprised when she looked at me, paused, and said, "Well I don't blame her."  

It's wonderful to have a doctor who is a mom, too.

So with that, I was reminded of the movie My Sister's Keeper.  I asked if she had seen it, and she hadn't, so I told her about it.  I explained how it painted a moving picture of exactly how a child's illness can ravage a family.  I told her how well it shows how the family unit grows, copes, and hurts.  She asked if the movie ruins the book, and I told her how I was scared of that but was pleasantly surprised what the producers did with the material.  She said she's going to go see it.

In another pile are her baby pictures - all taken when she was three, or younger.  Gap-toothed a grinning, backlit by a sloe-eyed sun, unaware of what was to come.  "I don't remember being her," Kate says quietly, and these first words make a bridge of glass, one that shifts beneaath my feet as I step into the room.

I put my hand beside hers, at the edge of one photo.  Bent at a corner, it shows Kate as a toddler being tossed into the air by Brian, her hair flying behind her, her arms and legs starfish-splayed, certain beyond a doubt that when she fell to earth again, there would be a safe landing, sure that she deserved nothing less.

"She was beautiful," Kate adds, and with her pinky she strokes the glossy vivid cheek of the girl none of us ever got to know.

          Sara, p322, My Sister's Keeper, Jodi Picoult

There's nothing in the world like a doctor who cares, a doctor who hurts inside when she has to tell a patient, "This is how life is going to be.  You are going to be bored, frustrated, achey, and in pain sometimes.  This is normal for you now.  This is all your liver," with the words "I'm sorry" radiating from her eyes.

It feels good to find a reason for this exhausted life I'm living, but it also frustrates me even more because even though I know the cause, there's nothing in the world I can do about it.

Father God,

Give me peace and strength, gratitude and understanding.  
Use this time to teach me, guide me, and reveal your light.  
Let me be an instrument to bless others,
to show them of your mercy and grace.
 
Help me to get through another day.