A bloody poignant day

Sasha is bleeding again. We have seen swirls of blood in the ostomy bag and a few small bleeds over the last two weeks but yesterday and today's output with clots again puts her close to how she was in hospital.

So today was precious time together and we started with the kind of email we love from one of the core nursing team at 4D:

"I just wanted to take the opportunity to thank you both so much for creating Sasha's website. It has become a part of my day, to check in a see how everyone is doing and I want to thank you for giving me a way to do that. The photos taken by Heather are absolutely beautiful. Thank you for sharing them. Sasha is in my thoughts everyday. I am so happy that she has been able to spend this time at home with such wonderful, loving parents. My love to all of you...Lauren"

So are we, thank you! Sasha wore her beautiful new red dress from Auntie Jess as we went with Sam for a walk and met Momma Adelle in the alley short cut to St. Clair. Momma is a spry 81 but doesn't look a day over 74 and she came up to me slowly and said, You have the dog, can I take the girl. Momentarily I felt like the father in the Blues Brother scene How much for the girl, the little girl but then the moment passed and Momma and Sasha and Sam and I sashayed down the alley and chatted about her impossible condition. She told me where she lives and beamed when I congratulated her on her rock garden. She has 12 grand children and is recovering from a stroke, just back from rehab. I told her Sasha had two strokes. We all connected on the neighborhood cosmic string of life. She turned to walk home on the next block and turned back and said, Its all in God's hands...

An idylic day, weather-wise, the perfect temp and a smidgin' of cooling breeze. Matt dropped by on his way to tennis with Dad in Barrie. Sasha took a sleep while Mom picked up some pasta. On her return I walked to Urban Fare to get some some tasty treats. Calea Pharmacy guys dropped off 10 more TPN bags and then 6 more metoclopramide IV bags proscribed to curb Sasha's nausea/vomiting and Irene the CCAC nurse came by to do a cap change. Then Granny took Sasha for another walk, we love that Granny and Grampy walk regularly with Sasha as its her favorite thing and we get 25 mins to hang together. We paged Dr Goldman to update him. Pam got the TPN setup by 7pm, we hooked her up first to the meto and then it was sleepy time.

A lovely day except for the peeks under our daughter's beautiful red skirt to see how much of her life energy has drained away.

Pammy is convinced Sasha will pass as she goes into labour. Its her biggest fear. And it is really hard to see how long she can continue growing varices, bursting varices, bleeding... And Pammy's real due date is three weeks away but they think she will be a week or two early. So here we are living and dying at the same time. One way I cope is by talking a lot about it with people. And if Dom or Chris or Paul or mom or dad or Kenny or Lorna arent available I will talk to myself. Its one of those bad habits I picked up while thinking too much. I like to prep my radio interview or academic presentation or client meeting out loud even when there are no radio interviews, you just never know.

I did call in to a radio show a few weeks ago for the first time as the host was casting aspersions about our very good Mayor and I was going to offer my observations that he is a really genuine hard working problem solver who doesnt hug the limelight like our previous embarrassment of a developer's mayor and then I swore in the first sentence and just heard dead air as I was cut off two words later. Left hanging.

So we are similarly waiting, checking under her hood, hoping, our only solace that she is smiling between her whining. We always could say she wasn't in pain, but she was uncomfortable tonight. She woke after a few hours and then again was tossing and turning around 11.30. Another of those firsts I mentioned earlier was that over the last three weeks she has relearned to roll onto her side, hanging her legs out like a weight. Now is rolling 3/4 onto her tummy which is her favorite position with her one leg pulled tightly into her tummy and the bag of browny red fluid sitting between her legs, under the brown summer dress because she doesn't really fit into onesies any more and we want to keep her little fingers away from the raw skin around her bag.

Tonight she played my fingers like an instrument. She has the most amazing fingers which we noticed when at a very young age she started to fan the thin thin paper in the phone book. She loves drums and xylaphones and puts a finger out to be touched. Tonight she ran the edge of her fingers over my fingers, with the touch of a feather. Another new thing over the last few weeks is that she flicks her eyes open and shut like a little game between us.

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