"That's what dogs do!"

"Well that's a shitty way to wake up!" After being woken in the hospital before sunrise for another blood draw.

"I'm naming my IV pole Mary schmutz!"

"Go ask Bill, he'll know!"

"I learned about the Dust Bowl today in class!"

"This kid is driving me nuts because he won't stop singing "Little Shop of Horrors" just to annoy me!"

The beautiful clouds at sunset streaked pink and orange with rays of white light streaming down: "That's there just for us Mom!"

In no particular order, these are things she would say:

I'm FINE!!!  

That's disgusting

Bill and I and Ethan and Zoe went to a reunion in a Chicago suburb for Bill’s sister and brother-in-law’s family. Zoe was ill but wanted to go. Ethan met his four step-cousins - Leo,who was his exact age, was born on the same day.  The girls, Carmela and Aurelia, were so sweet and helpful and tried to make Zoe and Ethan feel comfortable.  Rocco was a sweetheart little boy.  The photo below is what Carmela wrote on her instagram when she heard that Zoe had died.  

She got a few of the particulars incorrect (Zoe had kidney cancer and liver failure as a result of the radiation she had been given 9 years earlier - not stomach cancer)  but her tribute is beautiful and meant so,so much to me.  

Her Uncle, my husband,Bill, was later found to be a perfect match for a live liver transplant at Northwestern’s Lurie Children’s Hospital in Chicago.  The transplant is best done before the patient has gotten so ill it’s harder to recover.  Zoe was in poor health and suffering- but she was not high enough in terms of a PELD score (Pediatric end stage liver disease) to get a cadavaric liver.  

A live liver is something else, and if you find a match, you go for it, you don’t wait. Live liver donations account for only 5 percent of all liver transplants.  Over 20% of those waiting without a live donation die before a cadavaric liver is available.   There are way more people on the wait list for a liver than there are cadavaric livers, so if you find a live liver donor, it’s incredible.  Zoe had that opportunity, but she did not get Bill’s liver due to opposition from “family’ members who opposed it because it went against a narrative they were using during a custody modification.   

Instead, Zoe was patched up twice, and in the 5 years that passed became more and more ill. She died on June 15, 2018, just shy of her 16th birthday during a cadavaric liver transplant.  Her portal vein was just too cut up, worn and patched to salvage and reattach a new vein.  
 
This photo of an instagram message is from Zoe’s cousin who only got to meet her once, but it’s one of the most beautiful tributes, and I’m forever grateful for Carmela and her family, who have now become mine.  I’m so very lucky.

Lips bloody and cracked, holding fast to a bowl that collected the night's and morning's vomit because the doctors didn't know what to do (all it took was the elimination of one substance in her formula), head lolling about,  looking like she had just had enough but never once complaining.  Then she started hearing her stepfather (father really) reading the Very Special Book: The Bunny Planet.  Perked her up like rain drenching a brave wildflower that had been holding out in a desert just to prove it could survive despite the bad odds and all.  In a minute or a second, because time stood still, she was far beyond the moon and stars, twenty light years south of Mars, imagining the day that should have been, and could have been, if only everyone would have gotten put of her way and let her have the liver segment she and her donor wanted her to have.  She held onto that book like it was a wooden plank and she was a drowning  sailor   Squeezed the juice of the message right from the pages and drank it into her heart.  But for interference, Zoe would be with us here and now on this Earth, rather than on the Bunny Planet where now she lives, and thrives, and loves, and awaits our arrival on the joyful day we are reunited.  God bless you, brave, sweet girl.  You taught courage and genuine love--agape--and I thank God for the chance to know you, love you, and hold you.  See you when it's time, my daughter.