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"Each of us must come to care about everyone else's children. We must recognize that the well being of our own children is intimately linked to the well being of all other people's children. After all, when one of our children needs life-saving surgery, someone else's child will perform it. When one of our children is harmed by violence, someone else's child will commit it. The good life for our own children can be secured only if it is also secured for all other people's children. But to work for the well being of all children is not just a practical matter-- it is also right!" - Lilian G. Katz, Phd.

Saturday, February 7, 2009

With all my love and my sorrow

I am at a 2 day training this morning, sitting in a lonely hotel with just the TV for company while my companions partake of the meager offerings of the continental breakfast.  We were in the basement of a hospital all day yesterday, so this morning I checked my phone messages.
The message I received was expected, and yet it still took my breath away.  My Uncle, who fills my memories with light and love from the time I was small, is being taken off of everything but his ventilator and being moved to a hospice center today.
We were hoping he could go home, but I guess that is not the case.  I know he chose this, and he needs the peace, but I am not ready.  I don't think any of us are.  Like my other Uncle, he is still all there mentally.  He is still my pun-cracking, super intelligent, wonderful uncle who puts up with my political leanings and has always been there. I am so much closer to Jay than I was to Rusty.  I remember riding around town on the back of his wheelchair and taking him to school for show and tell in Kindergarten.  He is a part of who I am.
His kidneys, however, have failed him.  Now his heart is taking his kidneys' lead.  He has not been home since last June, being shifted between ICU, speciality hospital and long term care.  He was on a feeding tube, vent, and dialysis.  He is missing his grandson growing up.  He is in pain and so very tired.  I just wish he could come home, although I don't know what was involved in the decision-making yesterday.
Finding hospice that would take him was another issue.  Like my other uncle, Jay is unable to breath without a vent thanks to Muscular Dystrophy taking his lungs.  Hospice providers classify the ventilator as extradorniary life-saving measures, but if we take him off, we are instantly letting a very cognizant man die.  I don't know about you, but I can't do that.  When they move him, they will be leaving the vent in, but stopping the dialysis and the feeding tube.  
We will probably loose him within the week.
The grief is already starting and we haven't even lost him yet.  I didn't even realize that I was holding out the hope that he would pull out of this latest medical crisis again.  I know it is inevitable, and that we have had far more time than we were "supposed to" have with him, but I am just not ready.  None of us are, except for Jay.  And he is the one that counts.

From Christmas