90 days of grief, love and absence

Sasha died 90 days ago and the time has passed very slowly, full of sweet memories, salty tears, shared stories, the blessing of Sasha's lovely little sister Mia, and our groping attempts to learn how we can honour Sasha's life in our lives.

Sash, sweet peach, you are in so many our hearts and minds. You inspire us in so many ways, as Granny wrote: "We are thinking of you all today and have extra special thoughts and memories of Sashie. She is a huge inspiration for me whenever anything is tough or requires extra strength I think of her courage and tenacity. Her example motivates me to do what is needed however hard that may be. It is amazing how much she taught us all." Tonight Gramps told us he saw someone he had briefly met and didnt wish to disturb while waiting in line for his coffee - instead this aquaintance came up to him to share how touched she was by your life, her words accompanied by tears.

Kim, one of Sasha's nurses, wrote us today: "I was thinking of you today (like many other days) realizing that it has been 3 months today since Sasha died. Her sweet smile reminds me often to keep a smile on my own face during challenging days. We all miss her on 4D."

For all those who knew and loved you Peach, some happy moments to bring a smile.

First, The Happy Wall Walker. Sasha LOVED to walk hand over hand. Video taken November 18, 2005.

And one in a series of our all time favourites, Sasha doing The Sasha Dance to Stevie Wonder. Her crib dances after her bath were some of our most cherished memories. Video taken November 20, 2005.

And happy moments, amongst sad times: the night of Sasha's second birthday celebrated two weeks after she returned home. Sasha had two positions, sitting and lying down and she could not lift herself from lying to sitting. She was tired and quiet at her party but perked up with her mama after her nap. Bedtimes and waking up were the special times when she was often most perky. June 6, 2006 near midnight.

Sasha loved her toothbrush and watermelon toothpaste. We loved being at home with her on a bed that all three of us could lie on.

Sweet dreams princess.

Heartfelt thanks to HSC palliative care and Temmy Letner Centre

It was a comfort to see Sasha's bravery and the Hospital for Sick Kids' efforts described in The Toronto Star and in addition to the doctors and nurses and specialists at HSC we do wish to add a very important thank you. We read the article several times with friends the day it was published and right away I wished there had been mention of the palliative care teams who helped us come home and enjoy a very special five weeks with our dying daughter.

Here was our Letter To The Editor, which unfortunately did not get published:
"Thank you for celebrating Sasha Bella's short, eventful life and all the dedicated doctors, nurses and specialists at Sick Kids hospital in "Sasha Bella, 2: Palliative Care Fighter". As the article highlights Sasha's final return home we add our thanks to Sick Kids Palliative Care, The Temmy Latner Centre at Mount Sinai Hospital and the Toronto Community Care Access Network who offered our sweet peach paediatric palliative medical, nursing and psycho-social support at home and helped us learn to nurse Sasha to lessen their interventions. We also thank Heather Rivlin and Now I Lay Me Down To Sleep for a palliative care photo session that continues to help us heal and grieve. In your planned giving, please consider supporting paediatric palliative care professionals to expand comfort to more families facing such unexpected and potentially devastating loss."

The article was titled "Sasha Bella, 2: Palliative care fighter: Babies can also be palliative patients, Fund aims to aid parents and staff" and ends with quotes about the need for more palliative supports for nurses and parents. While the heading emphasizes the fund for Sasha without mentioning the palliative care programs and professionals who support those who are dying and help those who are grieving.

Maria Rugg of Sick Kids Palliative Care had the incredibly difficult task of first discussions with two very tired parents who were absolutely not ready to think of their daughter dying. Maria was the gentle hand opening a very scary door. She supports kids and parents through death and bereavement and educates doctors and nurses on the importance of bringing palliative care considerations to the patient or parent as early as possible to allow for informed decisions about surgical plans and quality of life.

Dr Christine Newman works both at Sick Kids Palliative and the Temmy Latner Palliative Care Centre at Mount Sinai Hospital, the only centre currently caring for children dying at home. Chris worked behind the scenes to get us home after we contacted Dr. Larry Librach.

Stephen Jenkinson, the psycho-social director of the Temmy Letner Centre, met us while Sasha was not under his care and for that we are grateful. Steve lead us to our worst fears and helped us face the fact that Sasha was diminished with each daily blood transfusion. He disabused us of selfish hope and then waded into our grief with us, even as Sasha was alive. Steve connects death and life and grieving as constant life forces and believes that 'hope' can remove you from the present during the last months, weeks or hours of your loved one's time. I wish I listened closer and spent more of her final hours by her side rather than adding material to her website. Tim Wilson's GriefWalker is a striking documentary on Stephen's deep exploration of the grief cycle.

Dr. Russell Goldman, Sasha's physician on the Temmy Latner team, was in the picture from the first palliative care family meeting through to the final visit. He proscribed medicines, guided us as we struggled mentally with the last days and was a gentle and calming presence, accessible through a long weekend as he had precious time with his family and late into the evenings. His were the last doctor's hands to touch Sasha as he removed her PICC line. His smile lifted our spirits.

The nurses of Toronto Community Care Access Network, including Marg, Irena and Soritsa (excuse my spelling) who were scheduled to visit us 2-3 times a day and kindly supported us as we took on more duties so they only had to visit a couple times a week. We appreciate their gentleness and humor and graceful support as we worked to minimize their visits.

Palliative Care and Temmy Latner and Toronto Community Care Access Network might say they just did their jobs but they did it sensitively and positively and immeasurably added to Sasha's quality of life in her final days. Sasha stopped bleeding a day or two after we came home and I am convinced that was because she was happier and that the palliative professionials helped her decide to be with us for an extra precious five weeks outside the hospital.

In the article, Sasha is a "palliative care fighter". She was that but she was first and foremost our very sweet first daughter who we were blessed to know and who taught us to treasure and celebrate life.

There are a couple small mis-statements, completely understandable with such a complex history: Sasha did in fact crawl and then started to walk after much focused work in our home by Lisa, her first occupational therapist. Lisa had returned to Sick Kids while Sasha was living at Sick Kids after her second surgery and then she started to visit Sasha at home after our return a couple times a week after a long day of work at Sick Kids - amazing; and the internal bleeding that lead to Sasha's death was not caused by a paucity of bile ducts (the liver condition common to kids with Alagille Syndrome) but rather suspected portal hypertension and bleeding varices that developed as a result of the damaged liver.

We thank Catherine Dunphy of the Toronto Star for her keen interest in Sasha's life and the family experience of pediatric medicine and palliative and bereavement care.

What Christal saw

Tonight a neighbour who faces us across the street told me that one day his little niece Christal visiting from Italy suddenly ran down from their porch, crossed the street, stood before the two pathways leading to us and our neighbour's door and then walked up our steps to the porch. As this was something Christal had never done before, they were shocked and happy there was no car. Without a reason to explain her bolt across the street, the family thinks Christal saw something and not a dog or cat in the window or a fluttering propeller by the stairs. "I think babies can see things we adults can't see".

Mike and his partner Tammy described Christal as more willfull than elder kids, if you asked her to do something she might just say no, she didn't feel like it, spoken to in Italian and English, small for her age and acting more grown up than they expect from a child of less than 3 years. Christal connotes "clear and bright" or "anointed" as a follower of a prophet. Mike and Tammy were not there when Christal ran to our porch, they relayed the story from their family. So I asked some questions. Maybe she was excited by the dog. No, she had a dog, she wouldnt have been so excited.

I remembered after H's shiva for his father that we read together some questions from 'The Jewish Book of Why'. He had taken the book to read by his father's body at the hospital morturary since his death on shabbat meant they could not find someone to watch the guard. So he acted as his father's shomer. So as we sat around the table I opened to the section on death and a question discussed was, where should the shiva should be held? The answer was the shiva should be held where the soul would return to view its earthly home.

I remembered their family sitting on the porch playing dominoes or cards or chit chatting or eating, even as our friends arrived for visits and prayers: shiva and the neighbourhood watch. I wondered when Christal ran across to our porch and Mike thought it was after 'the people had gone, though some people still visited' and he was sure we were not home and that Sasha had died. Four or so hours after Sasha's death, as we tried to sleep for the first time in the same bed, Mia told us she was coming and we sped down to Mount Sinai Hospital. We were there almost the minimum time, three days, burning to get home. So for three days the house was empty but for dog and cat. The funeral was 4 days after we returned. The shiva then followed by seven days.

So our lovely Italian neighbours across the street believe Christal ran across the street upon seeing Sasha's spirit when we in hospital with Mia or after the shiva when we were out one day. Or perhaps a wind caught Sasha's shiny propeller that spins beside our walkup to the porch; maybe Christal has pets but not a Sasha propeller. Or perhaps Christal saw one of our animals wiggle the curtains and appear in the big window then disappear back to sleep.

Boo and Uncle Lew

Louis Klar and Sasha, July 3, 2005, Sick Kids Hospital
Sasha's great uncle Lewis and auntie Irene always visited when they where in town, and too often this meant a trip to Sick Kids to catch up with our lil Sash. This is my favourite picture of Lewis and Sasha checking each other out.

Seeing Sasha when saying goodbye to Bertha

On our way to Montreal we saw the lovely Krausz residence in Kingston and loved how many pictures of Sasha there were all over. Then in Montreal a white butterfly flew over Bertha's funeral, just as it had at Sasha's funeral. After the Rabbi spoke about Bertha and all the family who missed her, Uncle Lewis asked to say a few words and it was very special to hear him add Sasha's name. There is such a power in small moments and details.

Pictures on a fridge

Sash in downstairs den

Sasha by downstairs computer

Mural in the kitchen - three little birds

Splish Splash

These pictures were taken around March 2005 when Sasha was 9 months and Betsy about 2. We were over at Uncle Kenny and Auntie Cindy and Kenny just suggested Sasha jump in. We had gotten through the winter after Sasha's first heart surgery without any major issues but were still a little paranoid about her catching a cold. So sharing a bath with her cousin was a very special moment.

NA-NOOSH-KAASES - Hummingbird

Several Sick Kids' parents and people interested in palliative care contacted us after the article and we talked of our experiences, celebrated our loved ones and shared our loss.

Children with Alagille Syndrome share characteristic features and one mom wrote that she saw her sister in the smiling picture of Sasha at age 18 months on the first page of the Life section. Reading the story she realised Sasha and her sister shared far more than a facial likeness and so she contacted us.

And so we learned about a little princess from a northern island who passed away after liver surgery having just entered her teen years. She was given the Ojibway name Na-noosh-kaases (Hummingbird) in a ceremony at the Hospital for Sick Kids Critical Care Unit. Her body was bathed in water steeped in cedarwood and then she taken out to the street. And she was named Na-noosh-kaases because, as her sister put it, "Hummingbirds are tiny but fierce fighters."

The connections between the two girls are truly uncanny and Hummingbird gave us a glimpe into what Sasha's life might have been like later. She loved to walk, as if the movement calmed her and would call out in her squeeky voice from her bed to the nurses station asking for the phone, she demanded attention. I remember little Sash racing along the walls of our house, hand over hand, calling out to us whenever she was awake, loving to play with her cellphone.

A hummingbird was painted in CCU in her memory, welcoming those walking along the first corridor through the doors to the isolation rooms and the nurses station.

Sadly, I seldom see humingbirds in the big city. Sasha and her never met and we never knew of her long struggle to live and the many heights she climbed. Both her sister and I dearly wish they had met and that we could share knowledge gained over many years of care. The Privacy Policy we sign at Sick Kids allows patient information to be shared for only three reasons: within the hospital to allow for the care of our kids; for the hospital to post us a follow-up study; and for the Foundation to request financial assistance.

An excellent fourth reason would be for parents to meet other parents whose kids are going through similar experiences. All that would be needed is a tick box on the privacy form indicating that parents are interested in talking to other parents whose kids have the same conditions or treatment plans. There would be no need for bureauocracy, social workers could look in similar files for a tick when a parent requests to talk to another parent and have another tool to support parents.

It was good to hear of you, sweet Naanooshkaases.

Fight for the living

Bertha Klar, Sasha's great grandmother, passed away today at age 93 in Montreal. She was a gentle, funny woman who always dressed well. Bertha was greatly loved and will be remembered.

On Lynn's kitchen desk is a pad of Rules to Live By. Today's note reads:
"Pray for the dead and fight like hell for the living".
- Labour activist Mother Jones

On this Labour day I give thanks to the nurses and doctors who work so hard for our kids and their parents and their parents, in the hospitals and at home.