walking the line

(from Wednesday) Once again i am snuggled into Ellie's room with both my girls sleeping peacefully.  sigh.  We have had a funderful day filled with visitors--Betsy C is here from Chicago, Karly took the day off to spend with us, Ms Zwart read to ellie for a couple of hours (and brought gorgeous snowflake cookies) and Esther played dragons with Ben (and brought a huge box of gail ambrosious chocolates). 

Everything has happened, it seems very quickly.  We had another care meeting at the hospital.  This time there was no Dr. Iskandar to rush in with a burst of frustration and hope.  Basically, everyone agreed that Ellie's body is shutting down.  She is now having more trouble filling her lungs with air and swallowing.  She is occassionally awake, but not often talking.  The doctors do not really know how long she has left in this physical form, no one is denying that everything is on the decline.  The general belief is that either her hypothalamus is so damaged it can no longer support her or her brain stem is shutting down. 

This morning (Thursday) Ellie was a bit more alert and interactive.  Better able to communicate, mostly in response to a question than a spontaneous elaboration, albeit in a whisper.  She ate FOUR chocolate chip cookies provided by our superhero, Karly.  She told me she raced to the parking lot of Willy Street Co-op on 2 wheels, securing the valuables for us.  As Ellie ate her favorite food, she just looked incredibly blissful, savoring every single morsal.  We were worried about giving her more to eat and whether or not her stomache would be up for it, however after we took the cookie crumbs away, she continued to try to eat the teddy bears and quilt on her bed.  (She is a bit disoriented and has also been saying that she cannot see.)   

What do I want for this time--to fill Ellie's hours with the people she adores.  A parade of love.  So Tuesday night when we were still in the PICU my brother-in-law, Ghany phoned.  He told me he was feeling like it was time to stop chasing the numbers, time to get Ellie home in her own bed with her own pjs and have her snuggled down. Thom thought that was the best idea he'd heard all day.  He thought if we could do birth at home, surely we could do death here too.  That's where we are at, walking the line between life and death.  While it is filled at times with anguish, grief, disappointment and despair, it is also filled with appreciation, clarity, love, and peace.