Found this journal I used to write in with these notes:
Remembering how hopeful I was when I took Megan to Wisconsin.  She seemed so normal compared to what she is now - even though she wasn't.
Looking at another girl who was I believe 7 at the time - and thinking how lucky we were that Megan was not as disabled as her.  It old Pat theose exact words.  I thought how skinny her legs and arms were  and how pale her complexion seemed with a kind of dazed look in her eyes.  I didn't realize that it was only a matter of time and would be looking at Megan who would appear so much like this little girl eventually.

Knowing it is a matter of time until she is taken home.  Bittersweet to know that she will be able to run and play and feel no pain - no more suffering.  I will  not be with her and my very being will feel destroyed by the loss.  The selfishness is human nature but how to overcome that is the real question.  If I let go like that psychic eluded to - Megan has not crossed because of my pull on her spirituality.

Next entry:

There is never enough time in the day.  Always feel like a pressure cooker about to erupt. I got angry at myself for feeling like this because I know I can't control time on the nature of my life.  I still can't help feeling like I am being held underwater.  The anxiety is what is going to destroy me if I don't handle it.  And everyone I love too.  But why is all of this my problem?  Really - it is an unrealistic expcectation and inhuman amount of stress for one person to feel responsible for every one.  And the guuilt I have thinking if I fail.  I want to shut the world away sometimes.  Even to get some personal solitude is not feasible.  All these people in and out of my house. Asking, wanting, needing.  God forbid I am not on my A game for all of these people here to help "us".  It is comical when you think about it but utterly overwhelming to me.  I am tired of all of the different personalities - nurses, etc.  and having to adapt to THEM.

Wow - thats a lot of angst.