Wednesday, April 18, 2012

Week Fifty-two - The One Year Mark.......

It's been a year.  A LONG year - the beginning of many long years to come.  Babygirl's transformation from a normal healthy child  to a Make-A-Wish poster child has been, beyond all doubt, the most challenging year of my life.  It made me examine my parenting, my expectations, my dreams, my retirement plan, my life and my loves.  It made me put my faith into desperate action.  It made me weak.  It made me strong. 

I don't have any profound advice for anyone else.  I look at other parents with profoundly ill children and wonder how they do so well with it.  I look at parents who have lost their children and pray that I never, ever have to go there because I'll never be strong enough.  I hover.  I worry.  I pray.

I occasionally look back at some of the older posts, and wonder why I'm no wiser now than I was then.  Why, when I know there's no going back, it still long to do exactly that.  I want to go back to not believing in germs.  I want to go back to being able to to send her on a field trip without medication.  I want to go back to being able to give her fruit salad.

There are so many things to let go of.  So many things to accept.  No camp this summer unless it's a very faraway kidney camp, or a local day camp.  No mission work next year.  No medication holidays.  No way to ever look at her life without being aware of its limitations and shortened duration. 

Don't get me wrong - it's not that I dwell constantly on the negatives.  The miracle of her transplant and the selflessness of her donor's family still make my heart sing.  Her laughter, her grace in the face of hardship, her never-say-die spirit and her growing sense of herself make me proud.  Her wicked sense of humor, her growing compassion and awareness of the world around her make me try harder to be the best role model I can be. 

But I grieve periodically for what we once thought we had.


1 comment:

  1. I completely understand. She and you guys got a bum rap. You wouldn't wish that on anyone. And the ability to feel carefree and without worry has been taken from you. Blessings to that family who donated and, as we all know they have it far worse, but it's a huge deal for your family and daughter. Life will never be the same. I hope for you all it gets easier and less worrisome. May you all be strong and without further worries.