As we approach the year anniversary of December 14, the day of Sasha's second cardiac surgery I am trying to remember the days leading up to that day. I had just begun a contract and was really enjoying working part time. My sister and Florence were watching Sasha while I was away and luckily I would be home early to spend a good chunck of the day with her. I remember insisting on working until even the day before her surgery as I always tried to normalize our situation. It had become normal that Sasha was going to have a surgery! I regret working the day before her surgery because I could have had her all to myself on the day before the day that would change our lives forever. I really didn't want her to have this surgery. Something just didn't feel right. I remember the Sunday before her surgery, there was a wonderful snow fall and we took Sasha tobaganning for the first time. We think she enjoyed and we were so happy to have that day with her. After weeks and weeks of being bumped, we felt so lucky to have more days with her before her surgery. We had anticipated to be home from the hospital in 3 weeks and obviously things did not go according to plan.
On the morning of December 14, Sasha was so, so lovely. I was dreading having her fast but she seemed to not be hungry. We all go ready as she played on our bed so sweetly and we made it to the hospital by 6am. As we entered the hospital parking lot, a wave of anxiety rushed to me. Sasha just looked at me and I smiled. As we prepared her for surgery I held her and didn't want to let go. We met with the docs and then they took her away. She would never be the same.
If I could that day back, I would. I wish I was more educated about Alagille Syndrome. I wish she never had the surgery. I wish she didn't have to go through so much, I wish she was still here. I don't believe she's in a better place like so many people say. I am happy she does not have to suffer anymore but the better place is with us. On days like today, I have little tolerance or patience for people who claim they understand when they don't. I think I should stop writing now before I get too bitter.
Peach, I miss you and think of you every moment of the day. I wish you were here with me, daddy and Mia. I love you.
Update on The Sasha Bella Fund at Sick Kids Hospital
We were stunned on Wednesday by the donation of $5000.00 to Sasha's new fund by Michael Garbe of Accelerated Connections and Hip. Thank you so much Michael!
Over the last 6 months we have gained support for several initiatives to help other kids and families and with Michael's incredible generosity taking us to our first $10,000.00 we are inspired to begin our first projects to help other kids as a tribute to Sasha:
As we learn, share ideas and start the process of formalizing the Fund's activities, our family helps with ideas for events that can perpetuate and grow the fund. Thanks for your interest and support!
In parting here is a quote I saw after exiting a discussion about how to social network the world to fully funded programs; how perfect.
"Hope sees the invisible, feels the intangible and achieves the impossible."
Over the last 6 months we have gained support for several initiatives to help other kids and families and with Michael's incredible generosity taking us to our first $10,000.00 we are inspired to begin our first projects to help other kids as a tribute to Sasha:
- a yearly recognition for nurses or nursing teams on 4D that exemplify family centred care practises, especially where palliative care support needs exist
- encouragement of more routine contact between Cardiology and Palliative Care when young children present multi-organ challenges and an extended surgical plan
- help explore a redeveloped Palliative Care website that supports research, parent and caregiver communication in hospital and at home and grief support for families
- participation in the 2007 Unicorn Ball fund-raiser for The Temmy Latner Centre
- physical supports like a stroller (sasha loved to stroll the halls and it was unfortunately the only way out of her room for 4 months) and possibly high speed internet for the kids playroom (we will also need a computer tied to that)
- an initiative with GI that is yet to be sketched out, possibly helping with efforts to better diagnose and treat kid's portal hypertension: Sasha died of a GI bleed caused by esophageal varices from portal hypertension aggravated by surgical complications
As we learn, share ideas and start the process of formalizing the Fund's activities, our family helps with ideas for events that can perpetuate and grow the fund. Thanks for your interest and support!
In parting here is a quote I saw after exiting a discussion about how to social network the world to fully funded programs; how perfect.
"Hope sees the invisible, feels the intangible and achieves the impossible."
The Dr Jay Charitable Foundation : a paediatric palliative care funding success story
Dr Jay and Fern Bachter have raised 1.8 million for paediatric palliative care and are now meeting to build on their golf event successes to reach more sick kids and their siblings. The Dr. Jay Charitable Foundation website provides a huge amount of information about their quest:
"Adding life to a child's time, not just time to the child's life."
I attended a meeting on Wednesday night where Dr Jay laid out their successes and strategic goals and motivated us to think about how we could build out the network offering palliative care support and grief councelling. An exciting initiative is support for developing a paediatric component for the EPEC (Education in Palliative and End-of-life Care) program that began in the United States and that could be then brought to Canada.
The eight people around the table shared stories about fund raising successess: like a school care-athon for kids visited by politicians and fed by one of Golden Griddle's top execs personally, or social networking like the volunteer Time Raising initiative of The Framework Foundation.
Coincidentally, the following night I bumped into Anil Patel of Framework, Domenic Bortollusi of The Working Group who coded Framework and Paul McGrath, a technologist and journalist with the CBC. We were circling around what must be a common meme in volunteer and tech circles - what is a MySpace equivalent focused on connecting socially to help the sick and differently advantaged, green the world and reconnect communities to do good and have fun at the same time.
Dr Jay emailed me after reading Catherine Dunphy's article about Sasha in the Star and we spoke several times. The lightbulbs go off in their own time, however. The Dr Jay foundation supported the Max and Beatrice Woolf program at Temmy Latner Centre, the program that helped us bring Sasha home approaching 6 months ago. Jay and Fern were in our universe some time before we knew them.
Far away eyes
Sasha, 27 hours before she flew away. We went for several walks a day often stopping at the neighbour's large wild rose bush to take a flower for her hat.
7-4-4
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.
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.
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.
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