So sad today

As I wipe the mist off our mirrors after we walked around the block to finish shiva, the sadness in my heart is so heavy. It was a very quiet day with Jonny, Mia, Sammy and I and the absence of Sasha is so real. I never thought that I would be this sad because we were preparing for this for so long. Jonny and I took Mia on her first ravine walk, the same route I used to take with Sasha every day. I loved my daily walks with Sasha and I hope her sister enjoys them as much.
Last night an old friend Ryan came over with his little girl Ella. She asked me if Mia had an older sister and I said yes. She then asked "where is she?". I told her that she is sleeping. I have been thinking about my conversation with Ella all day. How can I easily explain to a little girl the passing of another little girl? How can I keep the memory of Sasha alive?
I remember when my father passed away I was always afraid that I would forget him. I admit, I don't remember him well but I was thinking what if I forget Sasha. Some people believe that with time it gets easier; is it because we forget? At this time I think its impossible for me to forget her. Last night I did some laundry and there was some old laundry from last week and there were a few pieces of Sasha's clothes and I started to smell them. I used to spend so much time smelling her. She was so sweet. Unfortunately the clothes only smelled of dirty laundry and I don't have anything that smells like Sasha in the house.
Anyway, I hope with time my sadness will become less. My heart feels so heavy as I am finally trying to grasp that Sasha is gone. I trully never thought that she would ever leave us.
I miss my peach and I am going to try to keep her memory alive by sharing Sasha stories to Mia.

Missing Sasha on the last day of Shiva

Sasha and Lynn, May 25 2006
We were visited in the morning by Judith Librach with her little daughter Jessie along with Meredith and little Sarah. Judith's Dad Dr Larry Librach is the director of palliative care at Mt Sinai and when Pamela was ready to explore palliative care she first spoke to Judith. Moments when little girls crowd around Mia and speak to the cat are moments of normality, temporary respites from feeling Sasha's absence. In the afternoon Fran and Allan visited and we drifted into talk about the music we loved. Later Judith's husband Ryan Peck visited with little Ella, a nice bookend to the day. Ryan is a lawyer who works for Legal Aid, my kind of guy, and we see eye to eye on many things as the conversation turned to jewish education for kids and the recent ugliness in Israel and Palestine. Sarah Laiah and Steve Petroff also visited and that was a special connection to the group I befriended at Temple Emanu-El confirmation class in 1981-2 just after I arrived from South Africa. We ran through where everyone was - Sarah wants to plan a 25th anniversary of our trip to Israel, something to look forward to next summer.

Tonight was the last day of shiva and it weighed heavily. Each night I have conjured up Sasha in my mind during the service and they have been emotional. But tonight it was painful. Each day has been different in regard to how much I missed her, perhaps on some days I was just more distracted than on others. I felt at times like a tour guide, standing at the bottom of the steps, This way to see Mia, This way to shiva service. Tonight I wanted to be alone after the service and went to sit in the backyard. Later Raina joined me and said she thinks of her father Bruce every day and that she can hear Sasha's voice. After everyone left, we came upstairs. Pam was crying and watched some videos of Sasha starting to walk, the night before surgery. I had to walk away and get some biltong from downstairs. A bit later while Mia fed, we spoke about some plans and that was what I needed. I guess there is a fine line between remembering to the point of heartache and sinking into a depression and surely some of it must relate to how we spend our time and how alone we are. Pam and I seem to balance together and stay away from the rocks. When I told her Raina hears Sasha's voice she says she remembers the first visit after surgery before Sasha was reintubated and she HI, with a deep grating rasp. Sometimes I am thankful I do not have Pamela's memory and my reminders are the happy videos.

I love this picture of Lynn and Sasha, they seem so cozy together and Sasha looks older than she does in the other pictures around this time. What an intense soul.

A very special shiva evening

This evening the house again overflowed and the rains brought us inside where visitors ringed the lounge, den and kitchen. We were so happy to number among our visitors Neal, a family friend of Pamela's, whose residency at Sick Kids brought him to our rooms mornings and sometimes evenings to follow the progress or lack of progress with Sasha's fistula. His gentleness, friendly smile and warmth were great comforts during a difficult time in March. We were also thrilled to see nurses Val, Kim and Laura. Laura, another nurse who often stopped Sasha in the hall for a chat, and Lori and Lisa (Sasha's wonderful OTs) joined us for prayers.

And then the surprise of our week was a visit by Dr. Jennifer Russell, Sasha's cardiologist, and Christine, one of Cardiology's clinical leads. Sasha's baby room, now Mia's room, overflowed with the laughter of 10 wonderful woman. With Pammy holding Mia, Lynn massaging her feet and the Dr, nurses and OTs laughing at recollections of Mia's birth I felt a tremendous warmth toward Sick Kids.

I then chatted with Christine and she helped me see beyond where my mind has twirled over the last few weeks. As Sasha's treatment moved from fixes to palliative care I began to see transplants and extreme surgical interventions as palliative, buying a little time, but always requiring more work, tremendous medical support and often additional transplants. I have often thought, What if we had known what we knew at the end, would we have still started Sasha on the same course? I asked Dr. Russell, Could you have told us Sasha would like not have more than a very few years with us? No, she said, we just dont know, they said Sasha had three days to live and she lived 5 weeks. I have been wondering if we could have had better information on the risks Sasha faced. And finally I have come to realise that it was never about how long Sasha would be with us. Pamela, Dr. Russell and my concern was always on the quality of the life. So whether it was 2 years or 5 or 15 or 30 years is less the issue than Sasha's enjoyment of her time. And I realise we had enough information and that detailed readings or discussions with other parents on possible poor outcomes with us living at hospital would not have changed the course of our experience. We were filled with hope, sometimes an innocent and naive hope, and that hope was dashed after the second surgery. And although we always said Sasha had been so unlucky with complications after surgery we were also very lucky in that we are certain she experienced a range of discomforts but not chronic or acute pain.

It was a powerful evening, accompanied by driving rain and thunder, among friends. The presence of so many of Sasha's hospital team tonight in Sasha's first room, with the big pink wood letters of her name on the wall, meeting Mia, was cathartic. As Sasha's Sick Kids care givers continue to give, beyond our wildest expectations, tonight left me more at peace with Sasha's passing than at any time since her funeral and better able to focus on our beautiful memories of Sasha and on ways we can give back.

An abundance

The shiva has allowed us to relax and reminisce with friends. Meals are brought for us and we are asked not to do any cleaning or introducing people or setting out food. I am happy with Pamela's decision to honour Sasha with a week of shiva. When we saw the full box of middle eastern food at lunchtime we invited the providers to join us and we had a nice meal with Michelle and Mimi and Penny and Doug. Hersh and Pauline dropped by and the conversation turned to family time and Penny and Doug could not be more enthusiastic about family camp, where they go with there two boys each summer. Meals are taken care of along with activities for the kids. Sounds like a wonderful family experience. So much food we had to send some back with Penny and Doug. Shirley and Les then brought us more delicious middle east food from Me Va Me and the family helped us polish it off. An abundance of food, warmth and consideration.

I miss my Peach

Just a week has passed since Sasha has left us and until now it hasn't seemed real. As Mia and I discover one another, I think about how Sasha and I went through the same process. I spent so much time with Sasha that as her personality developed I fell more and more in love with her. I spent some of the day looking at old videos of Sasha and my heart ached with sadness. I miss my peach so much. We received a letter from Marianne today and she wrote that part of her had hoped that the 4 of us could have been together as a family. I yearned for Sasha to meet her sister thinking that her sibling would give her the energy to live.
Jonathan keeps calling Mia; Sasha. I mention to him that he has made a mistake. I wonder if he will call Mia by her sisters' name often.
Something upset me today. A visitor to shiva said probably the most insensitive thing to me. They said you have a replacement for Sasha. I was astounded that 2 educated people could make such a statement. I corrected them immediately and told them that there is no replacement for Sasha. It reminded me of when Sasha was very sick in CCU and some docs and nurses would say, well you are having another baby as if to take away of how ill Sasha is.
Sasha, you fill my heart with so much love and please don't listen to those who tell mommy and daddy that Mia is your replacement. Because of you peach, we want more children as you connected us into a family.
We are looking forward to the shiva being over so we can settle as a new family and grieve for Sasha while starting with Mia.
Ma Lou is supposed to start next week and we hired her with the intention that she would spend time with Sasha. I am not sure that I need so much help with 1 child but she is fantastic and I would love for her to be with us for when I go back to work. We will see how it goes next week but I think we may only need her part time.

I have attached one of my most favourite pics of Sasha to this post.
Anyway, time to get ready for prayers.
Sasha, kisses to you my baby doll. I love you.

Treasure and red threads

Thanks for all the comments, we see them stream into our email and enjoy them again as we look over the blog. Cyndi's comment on the service did make us smile: "Sasha, I can't stop thinking of the Rabbi's words.."this is not a coffin, but a treasure chest". That is the smile that I send to your Mommy and Daddy today." We would love people to share anything that stood out for them about the service. And I was struck by the economy of honour in Michael and Anastasia Khoo's wish: "...may she rest well after a life hard-fought", I would just add and well lived. Thanks for all the comments.

I'll fire off snippets of moments and conversations during our shiva, knowing that I capture just a tiny fragment of the different and new and unexpected rather than the continuous wonderful time by family and close friends that we are deeply touched by. So these snippets will not record each name, I thank all, as I am apparently not supposed to do, for sharing with us. We are meeting wonderful people from formative times that preceeded our marriage.

Next I read to Pamela as she breast fed Marianne's incredible letter from Mariane who saw Sasha in her last week and I wanted to share just her description of Sasha because it was so powerful to us. Mariane you caused us no pain, just a huge release of emotion after reading your four pages of tight hand written support and thoughts.

"During our brief meeting, I was struck by her presence - very grounded, intense presence. She sure was all there. I loved her brightness, how she looked at me straight and deep in the eyes to read me. There was nothing weak, meek, sorry about her. I am infinitely grateful for that chance at a glimpse of her, her spririt, who she was. I loved the way she touched my hand or my arm, as if she really meant something by it. Her hands were artful, poetic, so fine and sensitive, made for touching, so obviously. I know I only saw so little, but what I saw was beautiful; I wanted to tell you it meant a lot to me to be able to salute her, to know who was here. Even if it was so short an afternoon. When you all are ready, we will come salute Mia."

With Phylis and Arla and Nancy we dived into red from Phylis's thread bracelet of Kaballah. In Vietnam and Sicily a red ribbon on the living wards off bad and red ribbons are thrown into new houses and Serbian's have red ribbons for births and Sick Kids have a red bracelet campaign. We have seen a lot of red blood in the last 6 months, for the first time. And Sasha was so pretty in pink because that is Pamela's colour, beside black, and white. The De Vinci Code has returned the notion of bloodlines as a history to revisit and the inclusion after exclusion of woman into the panetheon of wisdom and power. Nancy once had to fill in a city survey asking her race (we expect as affirmative action) and realizing that her Lebanese, Sicialian, Mohawk family made her non-Caucasion. Michael Saunders being a gastrointerologist was interested in Sasha's testing. What do you screen for, what are the odds of the screen, what do you do with the knowledge? As a father to two healthy grandparents the doctor in him worries as his daughter in law ages so we were back, not unpleasantly, to doctor talk about our daughter. He also thought Sacha vomiting blood last summer was nose bleed due to coagulation issues rather than bursting varices and advancing portal hypertension.

Blood is a medium joining spirit and science. And now we stack empty plastic cups of juice rather than of Sasha's blood and though I miss her dearly I am at peace that she is now spirit.

Our family wrestled with the implications of genes and blood as we waited almost a year for the full cycle of tests to determine Sasha's mutation was random, autosomal dominant. Henry has worried of strong men in his family who died early due to sudden heart failure. He had such pain in his eyes when I explained to him that Sasha experienced two small strokes at the end of CCU. Sometimes during illness, one family focus and worry becomes, Is this hereditory? We have wrestled with our worst fears together.

It was an intense conversation and so we looked for lighter hearted treasure as the girls all gathered to hold Mia and look at videos of the sisters and we enjoyed Marilyn's shoes. Pamela and the sisters noticed that Sasha would check you out, from toes to head, intensely.

The shiva in the evening was overflowing in the back garden. Ron, our neighbour from across the street, sang a beautiful service covering afternoon and evening services. It was long and the time allowed me an emotional conjuring up of images of Sasha in the garden. It was also excellent to meet Pam's old family friend Marci Allen and her cousins Devora and Shira. Devora's creativity is channeled through her design company, Red Threads Design. I had not met them before and we promised to bring the families together later in the summer.

And Dr Jonathan Hellman, of Sick Kids NICU, encouraged us to think about how the Sasha Bella Fund could specifically support the family centred care focus at Sick Kids.

Sharing stories

After taking Mia for a first pediatric appointment with Dr Peer we sat on Rachel's lawn and talked about travel and day school with all the kids running around, then Rachel brought out some delicious organic tomatoes, cucumbers and carrots in balsamic vinegar.

The connections between people keep deepening as we speak with others. Life is full of synchronicity whose meaning is open to interpretation but which often offers comfort.

Today the 2-4pm visit started with Arthur and his daughter Lisa. Arthur is a teacher colleague and mentor to my Mom. I met Lisa's husband Mike and their two boys Kyle and Jake for the first time. It was wonderful to see the family, listen to Mike's CD for kids and talk about music. Sasha was booked to take a course with Mike when she had a bleeding episode last summer. Arthur knows loss of a kind I cannot imagine and I was happy to have him and Lisa to myself, without sharing them with my parents.

Rabbi Dietch visited and we spoke about souls and gilguls and he gave us a book on the Labovitcher Rabbi Shneersen. We do not participate in Chabad but his easy presence was comforting.

Darryl Landou visited and I hadn't seen him in twenty years, since Temple Emanu-El swept the 3 top places in a bible quiz in Montreal. He is now a mediator and specialist in workplace conflict resolution and human rights. After he left his mom arrived; Barbara is a lawyer, doctor and now mediator who helped start middle east dialogue groups. Her daughter Nicky wrote a play called Territories which was up for a Dora award tonight and that explores the death of Marni Kimelman in a random act of senseless violence while she visited Israel during a summer vacation: a pipe bomb was laid beside her on a Tel Aviv beach. Her parents then created Marni's Lounge at Sick Kids for older kids to play games and relax and hang out. We walked Sasha passed Marni's Lounge almost every day but it was not a service for Sasha so we did not have a connection to it. It was powerful to now hear of the play by Marni's close friend Nicky. Then Lauren visited, a dietician at Mt Sinai and a longtime friend of Pamela, who also knew Marni. Later than night after the service Emma mentioned that Nicky, the playright, was family through husband Paul Lampert. From a room to a life cut short to friends of the family to questions that each family who suffers trauma must confront. To questions like those her friends had to face: when a friend is no longer here, when and how is it ok to accept that their own live's will continue on, without forgetting the deceased. Marni's death was a tragedy. What meaning we ascribe to it must follow from our own experience and interests. Marni was around Pamela's age and went to the same school so Pamela spoke of her while we were in Sick Kids. Barbara made real Marni's families struggle with the great pain of loss and anguish by offering comfort to sick children. What a gift.

Kenny lead the shiva service at 8pm and many friends visited. It was wonderful to see Marilyn and Sandy from the Cardiac Ward. Pamela and I are very interested in finding a way to keep a connection to Sick Kids. One area of interest is helping parents support each other. The doctors and nurses are working hard on complex patient illnesses and also have to respond to parents who engage them with questions about options they hear about or, as we did, found on the internet. After the shiva, after we have had time to rest, we can find out what parent groups exist through the hospital and whether a parent bulletin board, managed and powered by parents, would help strengthen patient and family healing.

Your beautiful day Sash

We had thought about this day for so long Peach and at the end it was as we had hoped for in our dreams and was also quite mysterious in unexpected ways. A lot of people opened their hearts to you all together Boo. So this day we hoped would never come embraced us and helped us heal.

Thanks to Auntie Jess for a first account of what a beautiful day it was and how she felt you by Mia.

You would have loved driving in the limo sweet pea with Bubby and Granny and Gramps and Mom and me and Mia. We had a chuckle when the Klars passed us hair in the wind in a red convertable PT cruiser. We wound our way through the beautiful tree covered hills of the cemetary and walked out to see grandpa Bruce's spot that you are so close to, check out his collection of golf balls, we left one of your beloved soothers with him for you.

We then drove down the grass hill to the small grave as a lot of people waited, we looked at all the people who came to say goodbye, family, friends, neighbours, nurses, friends and business and social contacts of your grandparents and people we had not seen in many years and people we did not even know.

We came out together with Mia under the big sky surrounded by green, birds chirping and the hot sun and Rabbi Beilfeld celebrated your life. I was focusing on your little coffin, liking the slight pinky wood after al the discussions we had, and on Mom and Mia so I dont remember much of the Rabbi's words, I will ask him for the service.

Two things stood out. The references to the supreme being who lances and binds the wounds. That resonated with an article I read last night while thinking of what to say to you. Great trauma can produce great healing and people think that just like post traumatic stress so there is post traumatic healing.

He likened our ebb and flow of hope to the cockeyed optimist in the musical South Pacific who sings "i'm stuck like a dope, with a thing called hope and i can't get it out of my heart". That's not my generation or yours sweet pea, but I liked the poetry. The Rabbi was amazed as we all were at the timing of you and Mia and I think it was then he made the reference to the mystery and challenge of us all being, as Tony Bennett put it, Strangers in Paradise.

And isn't that reference a coincidence boo? A few days ago I was looking at our movies to see you and I saw videos of Will crooning to you, to the best of my knowledge the only time you have been serenaded, and that was the song (video is at the end of the post).

After the Rabbi, Granny walked over to you and told us about you and then Mom and I also spoke about how much you meant to us and then we put earth on your little earthly home "with our own two hands" just like in the song. And then it was a crush of people hugging us, some of whom we did not know. Normally at the services we go to people make two lines and the family walks to the car and then you meet at the house, instead here it was a bit of a free for all, which you would have loved. The Rabbi then spoke with Mom and I closely, saying the prayer how the lord giveth and taketh away. So many people came, but a few hugs were a special connection to Sasha: Hank and Cynthia who we met at Sick Kids and whose beautiful daughter Piper has Alagille Syndrome and is now 3 years strong; and Allison, Rebekah, Rilley and Tessie, with whom we lived for 5 months at 4D, and who brought a beautiful hand made goodbye card for Sasha and a beautiful welcome card for Mia.

Because there was no chapel service I am not sure if there is a book of people who came. The limo was our little bubble - I guess the thought is that it is more private and dignified for the family to remain in the car - in retrospect I would have preferred to greet everyone because not everyone could make it back to the house.

Back at home we had so many people in the back yard talking about what a lovely service it was, under the umbrellas and you would have loved the white tent and all the food. The highlights were seeing all the kids running around, especially Matthew and Ethan learning to twirl with Erika and a bottle of bubbles so that bubbles streamed all around. They put on my big hat and called it the bubble hat. And Matthew bonded with Uncle Ofer and so cutely called him uncle grover, shouting across the street when Ofer got to the car, Uncle Grover, give me a hug, and a kiss, and a high five! Much sharing, with Wilf and Shulamid we talked about the power of love; Wilfie was one of the first of our family friends to spend time with your sister Mia at Mt Sinai and it is wonderful to reconnect after many years. In his cancer work he spends a lot of time with people like you who must fight to live and it helps us appreciate what we did together.

Then we had a sleep and at 8pm we had a service. Again people that loved you came by including two of your nurses and we said the prayers in English and Hebrew and, in a lovely tradition of the Rabbi's, people were asked to tell stories about you. Granny told walking stories, Elizabeth spoke of when you looked like a cupcake, Sean told of us dancing in hospital, as if we in another world and Mom spoke of how much she loved your mischievious side. I couldnt speak. We were all touched, there were so many hugs and kisses, people of all generations in the back yard we played in together. Exactly as Mom wanted. And then I was so happy to give your lovely nurses Julie and Shauna your sister to hold. Julie said hullo and Mia surprised us with a huge smile.

And we had some laughs, which is great medicine. We were telling Grandpa about a crazy comic, all trying to remember some of his lines and Grampy was really tickled and then Katherine remembered his name was Sasha Baron Cohen (which is just one of those other coincidences), aka Ali G.

I leave you with two video series.

First, to thank Granny, we have you hanging out with grampy, followed by starting the hat game with big eyes and then Granny joins the hat game for big smiles.

And then that amazing coincidence of Will serenading Sasha July 20, 2005 with Strangers in Paradise as you work the leapfrog and more crooning and that impish smile over the shoulder and then you shout Will down and he moves to high five lessons.


Hamba gahle, go well, Sasha Bella, from Granny

My Dearest Sasha Bella

Your Mom and Dad call you their precious gift, Sasha the beautiful - this name refers not only to your gorgeous blonde curly hair and smiling eyes but your absolutely beautiful nature - you epitomize courage, feistiness, gentleness, gratitude, vitality, and most importantly an incredible joy, which has touched all who have been privileged to know - and therefore to love- you. You inspire us and as a great teacher you have imparted much wisdom in 24 months. You are like a meteor that shines very brightly and then moves through space in a swift trajectory; yet you will always shine in our hearts and minds. You have been showered with love - from the moment of your birth your Mom and Dad have prized your happiness above all else and they have admirably succeeded. No words can adequately describe Pam and Jonathan’s loving and selfless commitment to you - you have responded with gratitude and joy in a circle of endless love.

Your parents realized their wish for you to spend your last days at home surrounded by people and familiar joys you loved. The days turned out to be 5 weeks and each day was especially valued with many poignant moments - especially the celebration of your 2nd birthday. When you left Sick Kids hospital you were given gifts and large cards with messages from nurses and doctors on 4D, the cardiac ward, which became your home away from home. Many thanked you, Sasha, for your inspiration and your gift of upliftment. They clearly conveyed their admiration and love for you as well as their respect and amazement at your parent’s total dedication which many regard as an exemplary model for themselves. We are grateful to all who cared for you
during these 2 years and helped you, dear Sashie, to keep smiling. Your inspiring journey has been documented on your own website. Photos and videos celebrate your charisma and the blog entries from your Mom and Dad so generously share with us a process that few could even imagine. They are moving , poignant and sometimes witty and have elicited comments from far and wide showing how much you have meant to so many.

On Mother’s day you gave me the most beautiful card in which you described me as the best granny in the world. Grampy Henry and I have been privileged to have 6 grandchildren in the past six years. (Your sister, Mia, miraculously arrived only 12 hours after you passed on). It has been easy to look at each grandchild in the eye and say you are the best one or three year old etc in the world. Well, Sasha, you are and always will be the best, most special little girl in the world for your Mom and Dad, for your 3 grandparents, your aunts and uncles, cousins and extended family of Steins and Blumbergs as well as friends.

Your smile, your laugh, your special gestures which set off a pattern of responses filled with joy, your shining spirit - these are indelibly imprinted in our hearts. Hamba gahle, go well, Sasha Bella. May you rest in peace. We love you so much and will always celebrate your life.

Granny Marcia Blumberg

Thank you Peach

A part of us is speechless today, disbelieving you are gone and that we are burying you and our dreams that, despite the daunting surgical plan, we would live many years together. A larger part of us spills with words about your brave journey, the fullness of 2 years and the wonderful way you touched and taught people to see and appreciate life’s little pleasures.

When you were born, some people did not congratulate us, they did not know what to say, they were sad, and they did not know that Mazeltov was appropriate. We were so happy to have you Sash, we were deeply grateful to be with such a special little girl. Some people would stare at you and ask Why is she yellow? Others would simply say She is so beautiful. We are grateful to those people could see beyond the yellow in your eyes, beyond the scars all over your body.

Sash, for a child that had so much wrong with you, you were so happy, so engaging, and left us with so many wonderful memories. Mom and Dad loved waking up with you and having cereal with milk while you enjoyed your minigo yoghurts and carefully picked fruit loops and then went for a two hour walk in the ravine with Sam. The daily dance routine in your crib as you wiggled to Stevie Wonder. Hearing your sweet little voice. How much you loved your books and your incredible fingers turning the pages, the endless enthusiasm you had for throwing out crayons and cards and then putting them back, pressing cell phones and musical toys continuously, never waiting for the songs or beeps to hang, your interest in Dad's shirt pocket, playing with the hair on his chest and arms. The lovely way you held and caressed finger tips, the smile you gave your grandparents, jumping in the exer-saucer, flying hand over hand along the walls shouting at the top of your lungs, your happiness at seeing a chip, a cup of ice or a drink from a straw, your helping Mommy with the IVs and syringes and your love of your watermelon toothpaste. We loved the vigour with which you shook your head when you didn’t want something and the excitement when you pointed to anything you wished to explore. How you clapped and how you put your hand to your forehead in exclamation: Oh Goodness.

We are lucky to have a health system where there was never a discussion about resources or costs as you were 1 in a million and your health care cost millions. In many countries you would have died at birth. You taught us to treasure the dedicated doctors and nurses we met at Sick Kids who worked so hard to include us in your care plan and we again thank the floor 4 Cardiac Ward team and your pediatrican Dr Michael Peer for his positivity.

We were also very lucky to have our family’s support as we did. Bubby, Granny and Gramps visited us daily and your aunties and aunts were always available, often canceling holidays due to hospital visits and little scares. Your life was a marathon, not a sprint, and the family helped us help you. Everyone pulled together in their own way, flying in from out of town, working longer hours to keep the business on track, calling just to see how we are, arriving with food and good humor, and listening to us try work things out.

Your Mommy and Daddy did not have the opportunity to be together as often as we liked and we did not sleep in the same bed for many months as we cared for you, Mom during the day, Dad at night. Mom is one of the most emotional people Dad knows and it was quite a sight to see her alternate between streaming tears of love and concern and steely determination to give you everything. One of Dad’s greatest joys is to be married to a woman who loves being Sasha's mother, who taught Dad to see your quirky personality - throughout, when one of us was down, the other was ok. And since Mom was with you all day, she would often bear the brunt of your impatience. Dad got the big smiles when he appeared at the end of the day and he thanks your mom for that big pleasure.

Sasha, you have brought, and will always bring us so much joy. You have also taught us the simple righteousness of visiting someone who cannot get out of bed, of being simply present for a friend when words are difficult, of growing from trauma rather than avoiding or denying it.

Peach, you touched so many people in your two long years. We cannot imagine where you will go or what you will now do but we do know the joy you have brought and the discomfort you absorbed and the example you set ripples out through time and space in ways we cannot understand. Everyone who met you and heard your story was touched.

During the recovery after CCU we listened every day to Jack Johnson's Curious George soundtrack and we end with words we heard nightly as you fell asleep.

My own two hands

I can change the world
With my own two hands
Make it a better place
With my own two hands
Make it a kinder place
With my own two hands
With my own
With my own two hands

I can make peace on earth
With my own two hands
I can clean up the earth
With my own two hands
I can reach out to you
With my own two hands
With my own
With my own two hands

I'm going to make it a brighter place
With my own two hands
I'm going to make it a safer place
With my own two hands
I'm going to help the human race
With my own two hands
I can hold you
In my own two hands
I can comfort you
With my own two hands

But you've got to use
Use your own two hands
Use your own
Use your own two hands
With our own
Our own two hands
With my own
With my two hands

Thank you Sash for the joy, the love and the honor of being your parents. You will forever be our little Peach. We love you.

Mia's Blog

We have started a space for Mia at

A friend put it well last night, You seem in better shape than we are. We are sad however we have had months to digest that Sash was not bouncing back and that she had weeks and months, not years, with us. Our friends on the other hand get little updates once in a while and are in some cases a bit speechless at the news of Sasha's passing and Mia's appearance.

Yesterday we visited Benjamins Funeral Services to deal with the arrangements. Lots of decisions and details: the type of casket, the newspaper obituaries, delivery of prayer books, special low seats for immediate family, a wash basin to sit outside the house for people to wash their hands, a car to pick up family and drive them to the cemetary, a call to the traffic cops to get a number for those people who get tickets while visiting the house, signed papers that Benjamins will do the ID before burial as there is no open casket, discussion about whether we needed people to lead services etc. Benjamins picked Sash up and she has been looked after by them since Tuesday, there is apparently a man who is always with the bodies. A hundred little details that are supposed to be taken care of by others, so you dont have to worry about them and can properly grieve. The period of mourning will start after the funeral and go until Thursday, at which time we will walk the block together to signal the end of Shiva.

Benjamins waived their fees due to Sasha's circumstances and we wish to thank them for their generosity and kindness. We were quite bowled over by that.

Dear Sash

Mia sleeps, watched by Sasha and looking onto her picture
Your baby sister is very pink, latched immediately and we came home as quickly as Mt Sinai could discharge us. The complete opposite of you, sweet girl. She had no bruises, just a tiny symetric indent on the front of her crown. At one moment Mia's respiration was fast and so she was hooked up in the nursing station to a saturation monitor and the floor pediatrician asked for a complete blook check and blood pressure taken on arms and legs. Everything checked out and the fast breathing was put down to a tight diaper and having just had a feed but hanging out with the sat monitor again naturally took us right back to you. Your sister drinks so much that Momma cannot keep up. Sash, you are such a big little girl and so many people remarked that you helped your little sister by letting us give birth without having to leave you. Many people think the timing is more than just remarkable. And as a veteran of Sick Kids I know you would be so happy that little Mia popped out quick and is pinker than pink and looks so healthy. We spoke of you often and had a long talk with the social worker about you and us and little Mia. I love to think and talk about you Sash because although we miss you so much, and sometimes when we talk of you we have to stop and compose ourselves, we are so proud and amazed by what you did and who you were and we love to share it with people. So, ok, today we are going to choose your coffin, which should be a quick affair because we want our little girl to have a very humble coffin because we think that is the right thing. And then we have to get the notices to The Toronto Star telling everyone about you. And then before we know it, it will be time to meet again on Sunday to put your pretty little shell into the ground with lots of friends. Its really hard not to think of you because all your fun stuff is in the house and I think of you everytime I see chips, and there are a lot of bags of chips in this world. But that's ok, now that Mia has joined us I have lots of time to think of you and you know that I will always talk to you and you live in our hearts forever. And at the same time Mia needs her own love and attention and so we will set up another web log for Mia Ruby so we can link back and forth and let each of you have your own room. Enjoy the picures of your little sister.

Mia and Mom or MAMMAMIA! as Ofer said

We only have 1 peach in our basket

Well, the week is almost over and none of what happened seems real. Since the passing of Sasha on Tuesday evening, her little sister Mia Ruby has come into the world nearly 12 hours later. We brought Mia home from the hospital tonight as we sat in our hospital room for almost 2 days looking at HSC from our window. As we were driving up to the house, tears streamed down both our faces. Such mixed emotions.....when Sasha was born we never had the this time like we have for Mia. Shortly after Sasha's birth, she was taken to HSC.
As I walked into our house, I could only see Sasha everywhere. I really wanted her to meet Mia; I wanted our whole family to be together under one roof. Sasha's funeral is Sunday ... Gonna have to finish this later.

Updated Funeral Arrangements

Sasha's funeral will be a grave side service at Pardes Shalom, Temple Emanu-El section at 12 pm Sunday - see map. Shiva services are at (see map) at 8pm Sunday through to Saturday (excepting Friday night). You can confirm the funeral arrangements by calling 416 663 9060.

What timing

Pamela's contractions have started, of course, why is that surprising?

I need a break, this can't be happening. I wonder if I cross my legs if that will work!

Our peach is gone!

To say that this has not been one of the longest days of our lives is an under statement. Sasha was so uncomfortable in the morning and with the help of Dr. Goldman and some drugs, we were able to make her more comfortable. She was able to rest comfortably and I waited until the drugs wore off to see if we could somehow connect, maybe lie side by side and play. Unfortunately that just never happened. She woke briefly while still working very hard and I gave her some more meds. Lorna came up to visit and Jonny was with her too. I could hear them singing to her and then her take several large gasping breaths. I went into the room to make sure everything was alright and they continued singing. I was in the office and Lorna came up to me and told me she thinks that Sasha had passed. I said that it was impossible and ran into the room when I immediately noticed the lack of life in my peach. I sat next to her and sobbed and kissed her. All I could think about were all my tasks for the evening: prepare TPN, change ostomy and make Sasha comfortable.
From that moment forward, family and Dr. Goldman came by the house. We made arrangements for Sasha to be picked up and when they took her it was very strange seeing her lie in a truck gripping onto her pacifier and baby raggedy and poof! she is gone.
Walking around the house without her sounds and screams is strange. Wanting to touch her and feel her weight on me makes me ache. As I pace around the house, not sure if the pains in my belly are contractions, I enter every room only seeing Sasha. Going to bed tonight knowing I won't hear her vibrant voice makes me so sad. In so many ways I wanted Sasha to meet her sibling and have that moment. We tried so hard for her to experience as much as she could and I wish the last 6 months could have been so much easier for her.
I have missed Sasha for months and now I don't know how I can move forward without her.

Bye bye baby girl

Sick Kids called to ask if they could help and sent a taxi with a proscription and the pharmacy sent a new pump which CCAC nurse Sandra came to set up with Pamela. Sasha slept, we lay with her, padded about the house, did some cleaning and gardening. Marcia and Henry visited and sat with Sash and then we sang Sasha Baa Baa Black Sheep and touched her brow to close her eye, she's an open eye sleeper. She breathed five times quickly and I kissed her and walked into the hall and Lorna called me immediately. She was not breathing; I kissed her brow and told her everything was ok beautiful girl. About 20 seconds later she exhaled deeply and left us peacefully at 6.20pm, Tuesday June 20, 2006. Dr Goldman took out the PICC and we changed her diaper, put on a beautiful pink dress and lay with her until the funeral service came and I carried her out wrapped in her blanket to the wagon. Sasha fought for a month, to be at home after 5 monthes in hospital, when the bleeding had taken all her energy she left us in 14 hours. You are free sweet baby girl! Thanks for what you gave us Sasha, you are always a part of our family, the Alagille family and the health care family that you touched deeply.

Mom's picks - 1st birthday and Dorset - with Dad's commentary

We had a great trip down memory lane to Sasha's delicious phase last summer from her birthday in June to a weekend near Dorset Ontario when she was on her feet and into EVERYTHING.

Sasha is more comfortable, breathing deeply but with less labour and noise - no blood has come out of her bag since about 4am.

Pammy picked Sasha giving Oliver an earful at her first birthday which is even funnier in context - uncle Noah Klar regales all ages and checks for Goons then we catch Sasha shaking, uncle Kenny tickles her and Sasha taps the food in his hand during Bingo was his Namo followed by a rousing Farmer Brown as Sash decides between shaker and crumb until Oliver lets out a roar of approval and grabs some of Sasha's arm - which sets up Pammy's pick, our girl responds.

And then moving to a wonderful weekend cottaging near Dorset, Ontario with the loud golden goddess standing in the bath, feeling a lake's ripples for the first time, walking the log bench, organizing her clothes and back at home checking out her crib's drawers.

Hemoglobin low

Around 3.30am Sasha started to breath very heavily and became agitated so we gave her 1 dose of morphine to ease her discomfort with breathing. We paged Dr Goldman at 6am and he oked giving her more and came to visit at 9.30 and we gave her morphine mixed with midazolam for sedation. We discussed putting Sasha onto a constant infusion so she will always have a bit in her system and we can top them up when needed. Sasha slept a couple hours, and Pamela went to her OB appointment with Dr Berman, not wanting to put it off as she is within a couple weeks of her due date. Sasha opened her eyes once in a while, confused and unhappy. She is very puffy and on her return Pamela gave her 10ml lasix to get some of the fluid out. We have a rush order for more morphine and midazolam in to Sick Kids and Calea pharmacy and expect it early afternoon.

My sister in law Lisa visited and soothed Sasha with strokes to her forehead and some stories. Lisa is easy to be around and knows how to hang out, help and make small talk when you dont want a heavy scene reiterating the up to the minute bad report. With Sasha bleeding for almost a week we expect her hemoglobin has dropped precipitously and we understand the likely course over the next few days. We look forward to people dropping by when they want without having a vigil full of long faces. It is hard on sad parents when people bring a lot of sadness with them. We have lots to be glad about.

Since Sasha may not make her walk today we have to settle for some scenes of the walk on Saturday to the pastry shop and feeding Sam some brioche and my view on our Monday walk of Sasha's gorgeous golden curls and a lovely scene with my brother Sean that epitomises Sasha's love of people and sharing.

She is breathing easier now, thanks Mom for being such a great nurse. I am going to look in the archive of earlier days for something special to enjoy.

Happy videos

Sasha has the most wonderful laugh and Pamela was saddest in CCU when she thought she would never hear her soft voice and little squeels again. Here are some happy moments from the last few days.

June 2, 2006: Fun with a cup, Fun with a cup 2 and Post fun with a cup - night night

June 6 2006: Sasha's 2nd birthday June 6, 2006 was a huge milestone for Sasha, though she was quiet amid the commotion, much more fun for her was bed time when we played It's not a phone! with the TPN filter and Tooth brush time.

June 17, 2006: Sasha's lovely laugh for Mom, Dad, Marcia, Henry and Sean and Sasha's lovely laugh 2

June 18, 2006: Playing with first cousins Betsy and Sarah with Auntie Cindy and Uncle Kenny looking on and More playing with Betsy and Sarah

Return of the clots

When we got back from the walk her bag was leaking so we out her in the bath and replaced it, she was not charmed at all. But she managed a few smiles. Pam's brother Kenny dropped by and we walked some nice alleys off Wychwood, so peaceful they are. We bumped into Michelle and Pierre and their two gals. Mimi talked to her sweetly for some time but she stared ahead, in her own little world. Mimi is about 7 and old beyond her years. Will she see her sister, she asked me. I don't know sweetie, we'll see, was all I could muster.

After her bath we went out again a bit later on and she managed a happy grunt when she saw the stroller. This time she lay most of the time, the wind picking up her golden freshly cleaned curls. She looked like an angel asleep. Marcia dropped by and walked out to carry on the stroll however her bag was leaking again so we took her in. The clots keep getting bigger and pushing off the bag. So we replaced it in the bath after her first walk and had to replace it again at 7pm and then patch it again an hour later. Henry dropped by. Reina came over and we made some barbecued salami, steak, sausages and had it with a Greek cucumber salad and roasted fries. All she was interested in was a few bits of a freezie.

She is getting crankier as her lips get bluer and so Dr Goldman suggested we try Tylenol suppositories before dipping into the morphine. We just put her to sleep to Grisman and Garcia's bluegrassy and twangy Not Just for Kids : Freight train, freight train run so fast, Freight train, freight train run so fast, Please dont tell them what train I'm on, They wont know what route I'm gone... Lets hope she sleeps.

Swinging in sun and sand

Went for a couple hours walk, starting with Sheryl and a quick catch up on some humane middle east ideas and voices and then took off to check out some new park stuff. Sasha was happy throughout, reclining back second half and then ending up babbling nicely to herself on the final stretch home. At Hill Crest park we met another Sasha (a 1 1/2 year old? lil boy) and a cute tiny pug with similar black and white colours to Sam. All was idylic until Sam bared his teeth when pug and Sasha were very close to babygirl and Sasha ran off crying. Luckily Granny knew not to leave things there and brought him back, though his only interest was to run squeeling after pug. The sand box is near the edge of the hill overlooking Toronto, laid out through a scrim of big cover and trees. We were so excited to see the bright new jungle gym, climbing wall and sitting toys, alongside the sets of swings. So I kicked the tennis ball holding Sasha so Sam could do his athletic mid air recoveries and then laid her gently in a swing. She was momentarily upset and then got comfortable and hung in the sun above the sand and took it all in as I told her many people work their whole lives to sway in the sun over the sand.

A lady in Waiting

Lately, I feel that my day after day I am waiting. Waiting for Sasha to get healthier! Waiting for Sasha to bleed! Waiting for Sasha to stop bleeding! Waiting for Sasha to move on! and waiting for the birth of our second child. All this waiting makes me anxious. Jonathan and I are exhausted and Sasha is not that interested in anything. She is tired and has little energy to play. On the rare occasion that she giggles and makes a true connection, I pretend that nothing is wrong with her. At this point my biggest fear is that I will go into labour just as Sasha gets worse. How will I feel? Could we be in stranger situation; welcoming a life while preparing to say goodbye to another. At times I am so unphased about how sick Sasha is because we have been living with this for so long. Like I said last week, I miss my little girl who was so full of life. I am so sad that Sasha is so sick and she continues to hang on waiting to welcome her sibling.
Jonathan has been so great. I am so afraid of how he will be once we have to say goodbye to Sasha. He loves her so much and he can't seem to get enough of her.
I guess I will continue with my day wating for something to happen.

Fathers Day, everyday

I got my best card ever yesterday, a pink baby elephant sitting on a bigger purple elephant from Sasha. I never knew that a little card could make me so happy. Sasha loved the picture as well, I guess she forgot what she chose. Being a father has been a new life, the only thing I can compare it to is leaving South Africa and arriving in the whole new world of Canada. As someone famously said, The days are long but the years are short. I cant believe it has only been two years!

Last night Sarah and Betsy visited and Sasha was animated when Betsy turned on the talking Teddy (The wheels on the bus go round and round, Hullo, do you want to play today?) and Sarah discovered her little popup toy, figuring out immediately to push the popups back in. Then it was off to Granny and Gramps to see everyone except Sean and Mark (felled by too much South African Freedom Day sun and sausages). In the car I turned up the tributes to that famous 64 year old and Sash clapped away - but it was not to last, she was so cranky we had to leave after just an hour. Pretty much straight to bed for a quick nap and then the usual game of sit up, bug eyes, pointing NyaNya to the door, napping and getting us running up the stairs at her call. Ah Sash, you have my sleep habits on top of your Alagille itch. We kept monitoring her bag as nothing was coming out, the sign of a big clot getting stuck inside. The big ones can literally push off the ostomy bag.

I cannot lie with her for longer than a few minutes without getting teary, her beautiful golden legs and shoulders are skinny, just a trace of gold fuzz on her arms, as she keeps picking at the gauze covering her PICC and around her belly. She is in #5 diapers because of the size of her tummy but her thighs are smaller so she keeps leaking, Mom says I have had some horrible regression in my kid care skills but same happens to her diaper folds. So we go through all our fitted sheets everyday. Thank goodness for the plastic cover we put over the mattress, not sure why it took us two years to buy one!

Now she sleeps, Mom sleeps down stairs and all is quiet to the drip of the rain outside for the thirsty flowers. That means the red roses on the street will be full and one will be ready for Sasha's headband.

I just remembered, two days ago, I awoke in the morning as her calls seemed just a whee bit more insistent and I found her hanging off the bed, tummy on the edge, feet flailing, fingers gripping the sheet, about to fall down onto the floor. Sash has no interest in standing or walking. She can bear her pink stuffed mini throne chair but the only places she really likes is in our arms and on the bed. And on the bed what I have loved to see over the last few weeks is that she first relearned to roll from side to side and now is pulling her leg over so that she is almost on her belly, her favorite position before the surgery. I got such a kick out of waking up and seeing her sleeping on her tummy with her bum stuck in the air and her legs tightly curled beneath, her arms tight to her sides and her face plastered sideways into the mattress.

Thanks to everyone writing in, it means a great deal as each story is different and it is so important to remember that Alagille ranges very widely in severity and that so many moms and dads have lots to look forward to.

* The beautiful fingers of an Alagille baby....Sasha you are just like my Jordan in so many ways. We love reading about your days and your walks... all our love,
Leisa & Jordan (AGS) - Australia

* My Heart is with you today and I am not real sure ow you get through, but I give you all my strength anf prayers - you are such a great Father and role model for parents of Children with Alagille. Reading Sasha's blog made my heart jump out of my chest - she is so beautiful, she is a true angel.... I am praying that she is content and doing okay along with the rest of your family. I hope that you know how great of a Father you are, you make our family stronger - You are special to us...We hold a little place in our hearts for Sasha and she is included in all my prayers. Love Kristy And family (JIRI AGS)

Thanks, we get strength from our little fighters, our incredible spouses and our supportive family. Pam is amazing, she is now in the waddle stage but still hitting the stairs to deal with the meds I didnt pick up - it has been an evolving feature of our relationship that when one of us is dispirited the other is ready with some sick humour or stay the course support. I am more mobile and able to hold Sash. Pamela is fastidious in keeping Sasha in clean sheets and clothes. We are more of a team than ever before - thanks Sash!

Long hotish walk

We walked for a breakfast snack croissant to Pattichou, one of the longest walks we have had in while and it was a good hot day, hot sun with blowing air, perfect to see the neighbourhood. I see Pamela's strength in many ways but my favorite is when we are walking, she loves to walk Sam hard and it gets us out in all kinds of weather. A good time to catchup or just be together. Now at 9 months, she sharply inhales and you can see the determination in her jaw along with the flash of attitude in the eyes that we all know and love. And the expressions of attitude get richer and riper. Sash got into brioche and feeding Sam but complained as we got near home. She has been napping a couple hours now on 100ml saline drip to replace her fluids. Her nail beds are dusky and she is having a cranky sleep but even a little soothing takes her back to dream land. She clenches her hands together as if in a deep prayer, or just to still them. Twice her foot twitches a few times and the other foot rests on it to stop, I havent seen that before. I suddenly realise why Sasha has such extraordinary fingers, we kept hearing and saying, Her fingers are so long, So Dextrous, Such good fine motor skills (three was definately a bit of celebration of the fingers going on) - as I watch her pull at the PICC's k-lock bandage and gauze sausage and then reach to scratch around her bag I realise that her fingers are long and strong to better itch with, her fingers are the fingers of a young girl who uses them a lot, and also extensively in sleep.

The last cut

After Malou came back from Sasha's walk I could feel the sticky leak from the bag and we took her up try patch it. We try to just replace it once a day. However once the duoderm gets wet it is hard to fix another piece on top. So we pulled off the bag and the skin was improved over a few days ago.

Bag management is a tradeoff between time the bag is on and the deterioration of the skin if stomach juices push out from the seal and sit for sometime against the skin. So when we were exhausted with the bag we were happy to not have to replace it daily. However what we realised this week is that the success at keeping the bag on lead to bad excoriation / burning of the skin by the gastric juices. Theresa, our wound specialist at Sick Kids, suggested we remove the bag during the bath and so we have.

So the skin looked good but it was a chaotic affair as Sash had just had a drink and we would get the skin powdered with the stuff that heals the burn, sprayed with the no sting barrier spray and then a plume of milk erupted from her fistula opening, which is now the size of a pin head. These are perhaps the most trying times for Pam and I as Sash starts to cry, we cannot prepare the skin for the bag, and then when the bag is on Sash's first instinct is to scratch at the skin or pull at the duoderm. The bag sticky area is activated by heat so we hold our hand over it for a few minutes and then pick Sash up and hold her close to our belly.

After going to bed early, Sash was up per usual around midnight and as she turned to look at me I realised the entire left side of her outfit was soaked in blood as was the sheets. So once again, prepare the duoderm, clean the skin, afix the bag, seal the bag, redress her, redo the sheets. This pulling off of the bag during sleep is new. I thought maybe we could wrap some tensor bandage around her to keep the top and bottom edges of the duoderm sealed from her fingers but so far we havent gone that far.

Of all the complications, the fistula is the saddest because were it not for this hole in Sash's belly, out of which any liquid pours, she could have resumed normal food and been off the PICC line. That would have added to her comfort. She would still have a very compromised liver and GI bleeding but at least the TPN food would have ended, which hurts her liver. So the thought "what if she had never had a fistula" rears its head once in a while. She would have been so much more comfortable, we would likely have left hospital months earlier, probably returning after the next bleed. The surgeon who opened her belly to try help with the gastric bleeds were sad and surprised that she developed a fistula and it tremendously complicated her care and just keeps on keeping us awake at night. Good night.

Breast pumps and hosers

Rich and Marianne from Montreal
Sasha was giddy with good feeling Friday morning after two days of steady fresh bleeding. Rich and Marianne drove in from Montreal to hangout for a few hours and give us some of their lovely strength and humour; at times as we were speaking about Sash it just felt so heavy, no avoiding the obvious. And Sasha met Marianne's pump, fascinated as her and Pam caught up in the kitchen and she pumped away. With lunch out back and a beer, they were back on the road to miss the gridlock. Amazing!

Sasha then walked Sammy and me to the park with the cool wind blowing her hair and some smiles as Sammy jumped for the ball in his usual athletic manner. Then back to a nap, check in with the business, a quick IV top of of saline as she looks dry, followed by a walk with Granny and Gramps who now come ready, Mom kitted out in walking wear, Dad throwing off his jacket, rolling up his sleeves and muscling down the little front yard hill with the pram. No blood from noon until nighttime, then as we were getting our hopes up, it starts again.

To bed and lying beside her trying to keep her hands from scratching around her bag, where the skin is cracked and dry and she cuts herself, or worse, just ripping it off. She awoke as usual a few times and then around 11.30 wanted to hangout so in came Mom and then a good sleep until 8am, crabby and upset, her bag full of fresh blood again.

So off we went shopping, with a fresh rose in her hat band, getting iced chocolate chiller for Pammy and eggbread, potatoes, icecream, all kinds of beans for a salad and some pickled tomatoes for fun. But rather than making a big breakfast we had some eggbread and then as she actually cried out in her high seat I took her again for a stroll, when who did we see but Oscar and Doug preparing for a splish splash. Sasha sat without a peep and stared as 1 year old Beck held the hose and sprayed everyone, Doug set the hose to mist so Oscar could mist Sasha, and they all got wet and wild. Then Malou caught up and took Sasha further. I wonder what people feel when they ask how she is, that she looks Great! and I just say matter of factly, She's comfortable, wowee it was good to see the splish splash and looks like we have a couple more days together. That's right. I cant put it on her to give us any more surprises, its not fair.

Its been 4 weeks exactly since Sash Bedash came home and just less than a year since she first vomited large amounts of blood due to her portal hypertension, diagnosed at the time as a nose bleed gone awry.

To give joy somewhere else

Hi Jon and Pam

Fatts sent this message to me on the 9th of May. After reading today's blogI realised that you may want to see it. Fatts is a Bramah Kumaris and goes annually to India. There is some similarity with the Buddhist message. I loved walking Sasha today and, as usual, spoke with her the whole timepointing out flowers, cars, dogs, etc. I also sang to her. She often made sounds back or mimicked a sound I made.

Tomorrow I will remember to takehome my hat. I hope that you receive this message in the morning and are notup and awake like me. I also meant to write in my comment how special that Pesach seder was. Absolutely unforgettable. I send you 3 my fondest love - Henry does too because I know what is in his heart but he is snoring now.


I made a special request in class after spoke to you and we had meditation for her. This child came to you because you're a special family she needed your family because she knew that she would receive all the love and the care in the world and she did please don't take sorrow rejoice because you were given an angel for a moment and now she has to go and give joy somewhere else. If she hadn't come to your family she might not have had any joy to give to her next family I send her and all of you my family good wishes and pure feelings.

Fatima Dike
LANGA, Cape Town, South Africa

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.

Catching up is hard to do

I love you Pam, you are a GREAT mother and a wife. Thanks for carrying the blog as I disappeared back to work and for carrying the house and the hours of nursing work daily when you are almost due, not sleeping and have a long day with a very sick and very determined little girl.

I get Sasha's smiles because I show up after a very long day. So yesterday I worked from home and it was wonderful to be together, Sasha and I had walks and shopping for groceries with lots of visits, we all had lunch and dinner together, wow. But Sasha's bag kept leaking, we had to go in Tuesday because the belly skin around her fistula was burned, and then I put Sash to sleep and she just whined and rolled from side to side and looked at me. After 40 minutes I called to Pam and took a break. I honestly cannot imagine hours of that. It was as if after spending the day I got the same treatment later at night.

Unfortunately her sleeping only a few hours and then calling us to lie with her to sleep for hours puts a crimp on our evening time together, work on the blog and other stuff. We dont think now is the time to change anything. Are we wrong. When Sasha cries she can hyperventilate and go blue. Once she had a fever and shook and turned blue in the space of minutes - firemen brought us oxygen and we screamed down by ambulance to Sick Kids.

For me the last week has been the end of the cycle of firsts, where I hoped When we do this for the first time, or go there again, or Sasha does this or that then she will from be more animated. We took Sasha to a mall for the first time on a rainy Saturday last, and I hoped she would jump out of her stroller with all the excitement, but she didnt. Sasha is tired, we are tired. I keep wondering if we could stimulate her more, show her more things, play with her differently that she would be interested in people or standing or playing more (she does play and she does smiits wonderful to see but its much less common). Lets take her to the zoo for the first time! I keep hoping she will wake up less uncomfortable, her tummy get smaller, her organs shrinking, the high pressure in her portal vein lowering, you know, the impossible stuff.

And in case we draw too one sided a portrait, Sasha loves to gurgle and yap when she wakes up and just as she goes to sleep, or if she really needs to throw up, she might want to play after that. And this happens during the day. When I call out to her on our walks she calls back. She is not a mummy. She crinkles her nose with smiles. She smacks her forehead like Oh Goodness. She points fingers to be touched.

Alagille Syndrome occurs once in 50,000 to 100,000 births, numbers vary, but there is a tremendous range of heart and liver misconfiguration. Based on her developing portal hypertension by 12 months and having no pulmonary artery at all, she is on the far range of those numbers. How lucky for us to meet such a precious thing. We had a time when we asked councellors Why does this happen, i.e why us? And the Buddist nun said Suffering is normal and she will be reborn and all her struggle and your love will no doubt put her in a better life. And one Jewish story is of the Gilgul, the soul who departs quickly because they came back just to right a wrong and get peace. And we had our NaNoten Koach (Givers of Strength, biblically this is done by G-d of course) in the form of family and many doctors and nurses so many of who know that silent presence and affirmation of parent's anger and pain and tiredness is ok and those who do know what to say like Dr Russell or Dr Chitayat.

Having Sasha is a remarkable coincidence. Having her come home was against the odds. We are not religious but we did have a menorah unlit in CCU as she haemoraged and her liver numbers showed failure ; and we had a seder in the cockpit of the Terrace Cafe at Sick Kids with Karen and Anna from Gen Surg after she had survived sepsis shock in 6A. Its a family thing, with lots of wood, and wine. And then after weeks of bleeding she stops, the day after our arrival home.

Missing Sasha

Most of the time I am so grateful to have Sasha but sometimes I am so sad because I miss her so much. She is not the Sasha she once was. She doesn’t want to play, dance, sing or interact. The days that I am sad, I get so angry about the decisions that we made. About having her go in for surgery, about all the complications she had. All I can say is that I miss my little girl even though she is still is here. Lately her days are filled with walks and whining.
All I have to say is that I want my little girl back….I want December back.

So Many Birthday Wishes

This evening Lisa Hoffman (Sasha's OT) dropped by the house with many birthday gifts and cards for Sasha from 4D. I can't believe how thoughtful everyone has been and it warms my heart that Sasha made such an impact in such a small amount of time. The past couple of days have been challenging as Sasha has not been sleeping well and is not that happy during the day. I don't know if she is uncomfortable or just bored. Jonathan is hopeful that she will walk again but I would be satisfied with her being more interactive like she used to be.

So bitter sweet

The last three weeks have been an unexpected joy culminating in celebrating Sasha's birthday today. Happy birthday sweetie!

We have managed to get through the days without thinking too much of the future yet today was different. In the grocery lineup at Loblaws, with a cart full of food and drinks and utensils for a birthday bbq in the back garden, it suddenly hit me, this was Sasha's last birthday, and I cried.

We were so happy the rain stayed away; however I made my own rain. I cried when we sang Happy Birthday, and again as Pamela and I sat out front on the stairs as Lynn took Sasha for a walk.

Sasha, we are so proud of you and so happy for every moment we have had together. You have been so brave and so good natured, even though we know you are not always comfortable. Today was a big day for you, surrounded by our growing family, thanks for hanging out with us and being so full of surprises! I love you so much Peach.

Sasha's 2nd Birthday

Well, we are lucky to enough to celebrate our little peaches birthday today with most of our family. Sasha was so excited that she was turning 2 that she did not sleep the first 5 hours of June 6. Our day was pretty busy with preparing the house for our family. Lynn and Raina spent most of the day at the house with us and they were a huge help in the prep.
Jonathan and I were able to slip away to get some groceries while Sasha took an extra long nap with Raina. The guests started to arrive around 5pm and by 6pm the party was in full swing. All of Sasha's grandparents and most of her aunts,uncles and cousins(Jess, Of, and Erin absent) were able to attend and the weather held up which allowed us to spend the whole time in the backyard. We presented Sasha with her birthday cake and I couldn't keep my eyes off of Jonathan who sang her birthday song with tears rolling down his face. It was an emotional day for us knowing that this will likely be Sasha's last birthday with us.
After we all gobbled down our yummy Loblaw's cake, Sasha was ready for a change of scene. Bubby and Lynn took her for a little promenade around the neighbourhood while we did a little clean up.
While we were giving Sasha her medcine, we started opening her gifts but her tiredness cut the gift opening short. Nonetheless, we want to thank everyone for all the beautiful gifts for Sasha. We also want to thank the palliative care team at Mt. Sinai for sending the birthday balloon bouquet for was very thoughtful.
It was a wonderful birthday day spent with our little girl and we want to thank everyone who thought of Sasha today. Stay tuned for some birhtday pics either on the blog or on her website.

lazy Sunday filled with visitors

Sasha woke up earlier than usual this morning at 10am after having a very restless sleep. I was a bit groggy until I got some coffee into me and I was looking forward to walking today because it we were stuck inside yesterday due to the crummy weather. MaLou, Sasha's new caregiver came by at 11am to spend some time with us and she took Sasha for a walk until around 1pm. She is a wonderful woman with a tremendous spirit and we are looking forward to her being apart of our family. I was just about to get into the shower when two of our most favourite people were knocking at our door: Tessie and Riley. What a pleasant surprise! Sasha seemed really happy to see them and had a little visit before she went for a nap. Jonathan and I had a nice visit with the ladies and by the time they were leaving Sasha was up to say goodbye. It was awesome seeing them and were so thoughtful to remember Sasha's birthday and brought her a card. We look forward to many more visits from them.
Raina, Granny and Grampy came for a visit before she became very cranky and obviously needed an early sleep. Tomorrow is another day filled with surprises with Sasha and hopefully her little sister will give me an easier time so I can be more active tomorrow.
Hope everyone had a great weekend!

1st Visit back to 4D

On Friday June 2 I had to pick up some supplies from SickKids and I decided to bring Sasha along so she could visit all her friends. I was nervous to enter those doors again but visiting 4D was (like always) a great experience. It was strange being a visitor in a place we considered home for a long time. Luckily, Sasha did not seem upset by the experience which calmed my nerves. Lorna came along for the ride and was bragging about how incredible Sasha is. It was really great to see everyone, even though we didn't see EVERYONE. Dr. Russell came by for a quick hello. I always feel so lucky to have met Dr. Jennifer Russell. She has always played such an important role in Sasha's care and she has always managed Jonathan and I with the perfect balance of compassion and professionalism. Her energy and views on life have always complimented our goals for Sasha and we are forever grateful to Dr. Russell for all the time and consideration she has given to our family. She has had a tremendous impact on our lives and she will always have a special place in our hearts.
Well, the 1st visit back to SickKids was cool, calm and casual ( even though my body temp is HOT, HOT, HOT!) I am hoping that it will not be our last SOCIAL visit to 4D because I know that Sasha loves seeing all the friendly faces.