Celebration of Remembering

The Temmy Latner Centre and the Max and Boutrice Woolf Centre for Palliative Care held a unique and deeply moving memorial to the children and adults who died in their care over the last year. The memorial was held in the beautiful Floral Hall at Edwards gardens which was the perfect setting with its natural stone construction and lovely flora of all kinds.

As caregivers and parents spoke, other parents and children and family members build a small but elaborate house made from sticks and boughs tied together with colourful ribbons and decorated with feathers and flowers. An oval cupped wooden frame with sheep wool was then inserted as the floor.

Into this house we placed small objects in memory of our loved ones. We put in a baby Raggedy that we bought from the 5 Fifty 5 shop at Sick Kids and one of Heather Rivlin's photos with Sasha holding her Raggedy on Mom's lap with the IV in the background.

Then the youngest and the oldest were invited to say a blessing and Henry carried Mia to stand around the house with other children and grandparents.

The tempo of the 2 hour memorial alternated between stories told from 4 microphones and the ever changing group of siblings and parents and grandparents constructing the house.



Stephen Jenkinson introduced the ceremony as a time to re-member which he said was not the opposite of forgetting but of dis-member: we were here to reconnect with people separated from us. Jennifer told us about where they found each of the items used in the house and reminded us that the trees were a short time ago living things, connected to trunks. A duo sang and played violin of a melancholy and undefined music from 'The East'. And a number of doctors shared their special memories.

I feel privelaged to know such a deeply compassionate and spiritual team of care givers and, as the team members expressed over and over, they feel privelaged to care for our dying loved ones and then supporting the families when they grieve.

One woman related how she and her partner were married at home just before Olivia's death and I could feel that same sacredness she mentioned in the care and attention put into getting Sasha home again.

A little girl named Sage who was almost two joined in several times through the evening with loud shrieks of excitement that sounded so like Sasha.



It was very special to see Russell and have him hold Mia and play with her. As we heard from other doctors and nurses and specialists, we could see that the Centre attracted gentle positive people. I met Ceilidh the life specialist from HSC 4 who had worked with Sasha and Mom during the day when I was at work.

I was asked by Dr Chris Newman to speak about how the Center had helped Sasha and when I did speak I ditched my notes and spoke from my heart as I had noticed noone else used notes. My written words are a bit melodramatic, but true nonetheless. It would be nice to be able to write like you speak.

The evening was designed to help us reconnect not only to our loved ones but also to the people who became like family during intensely emotional and intimate moments and who then disappear from our lives.

Packets of sunflower seeds were placed at the door for planting because of their big happy faces.

It was a memorial unlike any other I have witnessed.

Thank you.

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This seems the perfect spot to show you the two trees planted in Sasha's memory on Paint Lake:

Thanks to the Max and Beatrice Woolf Center

EDWARDS GARDENS, November 7, 2006

This year we lost our first joy. Nothing prepared us for the sadness we felt, the decisions we faced and the questions we and our family and friends asked.

Nothing prepared us for the realization that our child was dying and that the dreams and memories would be frozen in time: no more peals of laughter, freezies, walks, kisses. No more milestone bravely crossed. Our hopes were replaced by grief, even as our child was with us.

What can I say to you who helped us grieve? Here are a few words to celebrate and remember your amazing support of our family.

After 5 months at sick kids, after a second surgery resulted in terrible complications, we contemplated a final proceedure that might have temporaily helped sasha or put her in a worse place.

And while we were still absorbing that there were no more medical miracles for us we walked across the street from sick kids to temmy latner.. I will never forget that first conversation with steve jenkinson.

While sasha knew our love we decided to end medical supports and let her tired sick body enjoy peace.

We had only one more wish, to bring her back to her home, where she was born, to her toys and games and dog and cat and walking paths that she knew. Her second birthday was coming up and Pamela was 8 months pregnant.

And our wish came true.

And during our first days we wished her last days to not be a vigil but a celebration. And steve and dr russell goldman visited us and we talked as a family and exhaled all of our 5 months of waiting in the hospital and we breathed together again.

And as friends and family visited and our only child sat in her high chair and went for walks, we wished we would have more time together. And sasha stopped bleeding.

So we awoke to hear birds chirping, and wished our precious child could have more time with us and less with nurses and doctors.

And the nurses of CCAC and dr goldman supported and trained us on iv proceedures and visited us when we needed help and gave us space to be alone together as a family. And whenever we had questions our care givers were just a phone call away.

And we wished her to enjoy each moment and sometimes she did, and sometimes she seemed sad and tired like at her second birthday party.

And when we worried we called Russell and he and the nurses visited and made Sasha comfortable.

And then her breathing slowed and quickened and it was the only day except for in critical care that we did not hear her sweet voice.

When we called Russell around 6.30pm on June 20th he said he thought he knew why. We dressed sasha in a pretty pink party dress. Russell removed her pick line and held a bandage to her wound until it stopped oozing and he kissed her forhead.

And as quietly as you enterred our lives, you were gone, helping other chidren.

Until we needed you in our grief and steve visited to talk with us about the past, the present and the future of our bereavement and connection to our sweet peach.

I cannot imagine not having those final memories of sasha at home. She was so happy to be home.

Thank you to everyone at the Temmy Latner centre and Max and Beatrice Woolf Centre. Thank you, thank you. We wished we met you sooner but we were scared to go home with IVs. You walked with us and removed our fear. You became a part of our family and we miss you. Your team empowered us and graced us with your knowledge, your experience and your kindness. Your nurses and doctors loved our little girl and have our love and deep respect in turn.

I was surprised to hear that your special services are largely funded privately and I ask that we all keep the centre in our thoughts.

To our precious children, we love you forever, for ever and ever. To all the care givers at Max and Beatrice Woolf, you are always in our thoughts, alongside our children. And to the Woolf family and the Dr. Jay Foundation, and all the other special donors, we thank you for your generosity and compassion in helping bring our children home to the place they love.

My first dream with Sasha

There she was, crawling quickly to me, looking bigger than she was during her crawling stage. Later in the dream I was holding her and walking as some kids dropped from the trees and swarmed us. They looked at Sasha and suddenly all the menace was gone. I woke up and enjoyed the warm images.

Here is a video where you can see the fire and focus in her eyes as she takes on a task, her sweet little voice with loud breaths, her curiosity as she look down and around the floor, that moment of perceived risk as she looks out while letting herself fall back from standing to sitting. Taken July 22, 2005 when Sasha was 13 months.

Little Jimmy's Chicken Pickers and Sasha

I went to hear Little Jimmy's Chicken Pickers with Burly and Terry and listening to rising guitar and accordian and banjo and stand up bass in the country folk cover tradition I felt very connected to Sasha.

Bill Stahl saw the Toronto Star article on Sasha and we spoke of her in the court yard at Mitz's under the stars. Terry loves modern country like the Jayhawks and Wilco. Times like these I always wish we had more time to dance to hootenanny together.

Once I returned to Sick Kids CCU after hearing the band at the Tranzac Club and when I went in to Sasha's bed I found her golden and luminous under the lights, surrounded and intensively worked on as she crashed. She looked like she had been bathed in gold leaf. 'She looks like she is glowing' was what I said. Pamela was so angry that I had had some beers while my daughter was dying. Three months later Sasha cried when the life specialist played her guitar before we came home.

I used to hum the old hymn We Go Down To The River over and over in CCU and wanted to just dance with our little peach. I had imagined Bill and Tressa and the band playing in the 4D play room or wandering the halls of Sick Kids.

It was good to reconnect with the band and Burly and Terry had a good old time. But half way into the second set I had to go outside as the tears were starting to stream down my face.

There will never be another one like you

We approach four months. My grief is turning. At first there was absence, an appreciation of the present with Mia, a relief at the end of Sasha's suffering, a desire to enjoy the difference, to meet with friends. There was also desire to open the book on questions left unasked.

So I channelled my energy toward meeting with Sick Kids and learning about foundations to see how we could help or perhaps to mark the lessons Sasha held for us and others. It was a time of questions.

In fact the last few weeks have been so busy I forgot to go to two palliative care events I was looking forward to and was honoured to be included in.

Now my sense of loss and sadness deepens. Before bed I cannot get Sasha out of my mind, some nights it is hard to fall asleep. And yet I do not dream of her. I wonder why. My dreams are wierd, not sure I would want little Sash dealing with the characters in my dreamworld.

The other night I went to bed early and rose around 5am. I love to see the sun rise as I read or write or reflect and enjoy the quiet as the night turns to day. Approaching 8am I laid beside Pamela and enjoyed that special smell of a beautiful woman at rest.

My eye was caught by the bars of blue sky through the slats of the blinds. And then I saw Sasha's arm. She was all there in my mind's eye but my mind chose to bring me her golden arm and then move me to the white scars set off against the yellow flesh of her chest.

And it hit me like never before, I will never know such a girl as Sasha ever again. And I cannot shake that feeling. Perhaps the last four months have been too filled with busyness to really feel.
We cannot shake the feeling that we let her down, that we could have tracked down her bleeding in the summer before the surgery or brought her home earlier after the surgery. Everyone means well when they say we did all we could and that you cannot make a wrong decision out of love. Unfortunately we have to deal with our own regrets in our own time.

For the first time tonight I had just a momentary flash when I imagined what it must have been like for her to be stuck in the hospital for 5 months, too young to ask us why we had left our lovely home with our lovely dog on our lovely street.

I am so happy we came home, but it could have happened months earlier. We were not ready. We were so caught in the day to day. The hope. Ah, that hope.

How many of the doctors and nurses knew how it would end? Many of them would say, You never know.

All those days we waited patiently for rounds to listen to every word and ask every question we could think about. Now we wish we went home earlier on TPN. We were scared to go home.

Two years of Sasha sleeping one, two, maybe three hours at a time and five months at Sick Kids conditioned me deeply. Friends used to say, You must be under such stress. People can adapt to amazing things. Now this conditioning washes away and I can feel more and often it just doesnt feel good at all.

Yet life has an amazing way of swinging. Today we went to see tombstones at Benjamin's. We needed to change Mia's diaper and I pictured hands and eyes raised as we cleaned her bum in the main hall surrounded by tombstones and pictures of graves. But Michael Levitt kindly offered us his table (we lay Mia on a blanket on the floor instead) and it was no biggie.

He was younger than we expected and I was surprised when he told he was born in Scotland. His accent rose as we had spoken and suddenly it hit me he had an accent. So we reminisced about the wonders of the Scottish land.

Then we looked at the stones and talked about the designs and wording it was a light banter. Not heavy at all. And then we taked about would there be some Hebrew words. And thinking of what words I would want to say in Hebrew brought tears to my eyes.

It is almost knee jerk how tradition can serve as a sluice to emotion.

So it goes, alternatively psychically battened down and opening up, and feeling that intimate knowledge that my little girl is gone and no amount of good deeds will give me one more live moment with her.

The circle of sick kids who never got well

Today the gates of Pardes Shalom were closed for the last day of Suchot so I climbed the stones by the fountain to vist Sasha's grave.

The small mound of brown unmarked earth was replaced with a small rectangle of fresh turf, the twigs and crayon I had left no where to be seen, a new small black marker listed her name and date of death and the phrase Lives on in our hearts.

I placed a large stone and two small stones with a pink jube jube for me, pamela and mia. The stones were pinky, streaked with quartz from the ground near Dorset.

I knelt and touched the grass, imagined her bones in the earth and looked at the skies and the trees and willed her presence in the air around.

I then watched Mia as Pamela visited. Mia was now awake so Pam fed her while I went back to visit Bruce Stein's grave and add a stone beside the golf balls.

I imagined them together, in spirit, and pictured Sasha sitting on Bruce's lap, laughing together.

This week has been full of memories and connections to Sick Kids. On Thurs I met Mitch and Deena and Haley who lost Melanie last year. Friday we had supper with two of Sasha's nurses. Today we were visited by Nancy and Owen who lost Mitchel earlier this year. Our experiences were all different and yet we are touched and connected by the beautiful sick children that we celebrate and grieve for.

I see Sasha's face every day. It may be triggered by a beautiful sunset or by a toy or the bright propeller spinning in the wind by our stairs or by a sticker lying on a sidewalk. I still wash my hair with a shampoo I used in her room at Sick Kids.

We see Sasha in the differences with Mia who grows fast, sleeps well, feeds with gusto and is content and at peace, the polar opposite of her sister. What they share is the big smile. Mia has started to chortle.

Lately I re-remembered a little moment from last year when Sasha was playing while Pamela was out and I would sneak onto the porch and watch her as she played with her book or at her kitchen. I waited as her attention turned and then she would look for me, crawling or walking her little walker or along the walls in search of me, calling out sounds in her excited voice until I returned to get a big smile.

Yahrzeit candles and conversations

Traditionally Jews light candles a year after a death but we lit a candle for Sasha along with Bruce last sunday on the night of Yom Kippur. It was hard to first celebrate the new year and then a week later contemplate and atone for sins against other people and against the spiritual. Though I am an athiest Jew (strange as that sounds), seeing the two candles beside Sasha's pictures and then on the kitchen table was a gut kick when I had one of those discombobulated moments of disbelief about an event that recently happened and of which there can be no doubt. A moment when the eyes glaze over and the reflection is non rational, just a wave of emotion.

In June I was exhausted, sad and almost relieved for Sasha. During the funeral and meeting of people for the shiva week I felt a little disassociated. There wasn't time to grieve before Mia arrived. There were many times of intense sadness and awareness, such as at her funeral, but the finality for me of Sasha's death seemed to flare more with the flickering candle burning through the night and through the entire following day and into the part of the next night.







We have finally had a chance to meet with some of Sasha's care givers to whom we turned for advice about Sasha's fund.

In September I met with the paliative care nurses and doctors who helped bring Sasha home and was appreciative of their support of my interest in creating a place to remember the HSC kids who have died and any help we can offer in expanding parents choices as they evaluate surgical options. I was very happy to hear of plans for a palliative care library and website portal where knowledge about choices and resources in the hospital or out at the home can be further explored.

Then we visited Sasha's cardiologist, Dr. Jennifer Russell, as a family with Mia. First we stopped by 4D to show off Mia and enjoy a few moments with the wonderful nurses and OTs.

The meeting with Dr Russell was long awaited. We were lucky that by complete chance Sasha was paired with a doctor who can turn from a lazer like dedication to cardiac research and care to an open and empathetic review of any process or decision throughout Sasha's life or experience at Sick Kids and that she has ample capacity for our awkward jokes. She gave us direction and suggestions for further thought about the projects we wish to work on.

The visit was immensely gratifying. And then, as always, followed by intense sadness. Sasha was sicker than we knew as she struggled to grow and develop and handle her medical supports and interventions and then fight back after post surgical bleeding and liver failure. Our little girl experienced a lot and her care was more challenging than expected. So we have a growing list of ideas and little projects that we wish to know think over and fund raise for. More on that later.

The next day we got a supportive email from the OT who helped Sasha walk. "When I think back to how much she accomplished in terms of motor milestones, not to mention her lovely spirit and social skills, I realize now how truly amazing her achievements were. Knowing now, how "invisibly" sick she must have been, her accomplishments were utterly remarkable! I will always feel blessed for having known Sasha."

Pam was asked at our local children's store on St Clair, Playful Minds, how she was doing and if she minded talking about Sasha. What a great question! We love to talk about Sasha. Sure it is sad sometimes and perhaps some parents dont want to talk about a deceased child, so it is good to ask. We do. For those who know us, we are very happy that you remember with us, when you wish to.

For all the dedicated OTs and PTs, here is Sasha's crab crawl, her wanting to always do a couple things at once, and her fiesty determination to go where she wanted: