I stood in front of Sasha's grave and placed a box of Pringles with chip fragments and stones from Mont Royal and said hullo. Looked at the trees above and other graves, I was not at peace. One day we talk to doctors in NICU about surgical plans and just over two years later we are standing by her patch of grass. From darkness to light. Risk and fear banished. Sleeping in 1-3 hour stretches until Sasha held her own bottle. Laughing 10,000 times with each of her laughs, cooing over every tiny growth, holding ours breath for catheterizations and anaesthetics and surgeries. Our life orbited Sick Kids Hospital until hope turned inside out to a wish for a peaceful goodbye.

We had 744 days to love Sasha and they were the longest, happiest and saddest days of our lives. It is too soon to be talking to her bones.

Sasha was buried in a new section of the cemetary set aside for Temple Emanu-El members. This Reform shul welcomed our family to Canada and gave 4 brothers learning and adventures. My visits were infrequent during university and then we were married in 2001 by Rabbi Arthur Bielfeld in a beautiful service full of light and music. He turned us slowly to look at each person in the room and recognise them recognizing us on this day of commitment. Sasha reconnects us, her last home was our first community.

Where is Sasha's temple out in the world? She goes with us where ever we go.

Temple Emanu-El's new Rabbi Debra Landsberg is an American who finds our polite disagreements curious and wants to reach out and find all of her congregation's passions. At Yom Kippur she told the story of Bruria who loses her two sons as if losing a valuable left in their care that they must return and it was as if the Rabbi was talking to me directly in the last row. This story resonates strongly with parents of children who die unexpectedly though Sasha's death was not inexplicable.

The loss of any child is an enormity. Their absence is everywhere. Living with a medically fragile is so busy and full of gratitude for each moment that when they leave this energy must continue its journey.

Playing with pink sequins

I was reading the short anonymous hullo this morning and thought about the going to bed ritual which has become a Sasha saturated moment. Been forcing myself to read fiction again because its so good for the soul and excited to head to bed to get through a chapter or so of Confusion by Neil Stephenson. The book sits beside a picture of Sasha and mom. So each night I look at Heather's picture, Sasha smiling, held by mom, face a bit puffy; sometimes I give it a kiss and then I read. Sasha is always there by the bed.

What if there are no pictures or other reminders of those passed? Or say just one lovely presentation in one room? Do we think of them less? Would we think of her when we 'needed' to think of her as opposed to every time we see her on the wall? I just wonder sometimes how our emotions are guided by our enviroment this way; we are all different in how we decorate or record or memorialize and I think we use pictures like props in that struggle to remember or, in some cases, to forget some parts. I expect putting up lots of pictures or thinking of how many pictures there are and where they are is just part of that struggling with memory and in our case the wish to keep her with us as much as possible. As the memory details blur at the edges....

Last night mom comes to bed and says: "I can hear her". Na, na, na, na ... da. That little sweet voice. Sasha's voice comes to Mom in a particularly strong way. I reach out to Sasha and see her in my mind's eye and rehear her but I reconnect with her more through the blog and projects with the hospital and pictures. External things. Mom is with Mia all day and she seems to have more of a personal, internal connection. That's what I always loved about Mom: she is so darn personal.

We miss you so much Sasha.

I got up early this morning and was so happy to see a little hullo that I uploaded a few videos to Google Video. It takes a bit of time because I like to record the info and write up each video. Eventually there will be a bigger collection, sometimes I got started on one day so there is a lot of that day. You can see more Sasha videos by doing a search on Google Video for Sasha Bella Stein-Blumberg . Anyone know how to organize them? I will play with the dates to get them chronological.

Enjoy this absolutely magical moment with a pink sequin scarf.

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.

Celebration of Remembering house for the children and adults who died over the past year while cared for by the Temmy Latner Center, constructed by their families and filled with memories

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.

Dr Russel Goldman, Sasha's doctor on the palliative care team, holds Sasha's sister Mia Ruby

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.

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

Red maple planted by in honour of Sasha Bella Stein-Blumberg, fall 2006

Red maple planted by Henry and Marcia Blumberg in honour of their granddaughter Sasha Bella Stein-Blumberg, summer 2006

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.