New Years eve and twas time to change tubes

We made plans for a quiet new year's eve meal this Sunday night, returning home before midnight to usher in the new year with a special babysitter. Hopefully Mia gives Bubby a quiet evening of knitting and remains oblivious to a new year's dawn.

A new year. Last night Mike wished me "a better new year" and then stopped and thought about Sasha and how it could be a better year in an absolute sense; Sasha is not with us. I wish you a good new year. That didnt sound right either. We tried a few others, I wish you a new new year, I wish you a different new year. And we laughed, in sadness and appreciation. Mike challenged me to appreciate the two years we had together, as compared to the loss of a child at birth or in the womb which he knows from experience and I appreciated the straight talk.

Sasha's death is a huge void and working to help those who helped us dont fill that void but they do keep us busy, though we hope we help and are not a distraction.

This new years it will be hard to not remember exactly where we were 365 days earlier, wondering if we would ever hear our child laugh again in 2006. Beside Sasha's bed, talking to her nurse, seeing fireworks through the CCU windows on Elm St looking south over the city, exchanging well wishes with other tired parents hanging on the bed rails over their sedated and possibly muscle relaxed child full of wires and tubes and hissing machiness. And then her oxygen saturations dropped and a resident told he was concerned and wanted to change her tubes. It was over a week since the last extubation attempt failed. We exited and the curtains were drawn. We would wait, hold hands, hope for the best and push off bad thoughts, then scrutinize the doctor's face as they approached and wait for the magic words. His face was serious, tired, as he told us Sasha's o2 levels had stabilized and showed us the cut end of the tubes half filled with clotted tendrils of blood. He then he walked on down the hall of CCU to help another kid and I remember weeping at his quiet mastery and modesty. All over this world doctors reach into bodies and give back breath. We are grateful Sasha did laugh again.

Beyond the veils: hope, hospital curtains and Family Centred Care

What do you first say to parents of a baby with a serious medical condition? Same as you would to parents of a healthy baby. Mazeltov. My brother in law told me this on an elevator ride to get coffee at Sick Kids as he visited Sasha. I remember him three years ago sitting squeezed beside his wife's bed, his new borne daughter's glass crib and the yellow curtain separating the next family. They were exhausted first parents who had just heard their child had a hole in her heart and suspected Downs Syndrome. They were both processing a lot of unknowns, focused on their daughter. Later, with Sasha, many people could not get beyond the jaundice, wondering if she was sick, tanned, or was maybe adopted. Her pallor varied by the day. Many people got it right. Congratulations. She is so feistey. She is a gift.

Typically I have little time for white lies but it seems to me this is about growing up and being nice while being there. A little mindlessness amidst a lot of mindfulness. Yet you have to watch the mindlessness or it bites you. Here is a conversation that repeats over and over. 'She is so cute. Thanks. Is she your first? No, Mia is our second. Oh, where is your first? Sasha died in June. Oh, I am so sorry, I did not know. That is ok, you couldnt know. I am so sorry. Thank you, it is ok, we are happy to talk about our little peach.' We have exchanges like this when buying kids clothes or standing outside a toy shop. Looking for bigger tops to cover Sasha's 56 inch girth, a very young sales associate asked: Why is your daughter so green? I prefered questions to looks away. Mom could get incensed. For me, even the 'Will she get better?' was better than nothing. The answer was: we didn't know. We talked for a long time about a mother in line with her son at Dairy Queen: she was nudging him to look over at Sasha and was making a face, Pam caught the nudge and the face but what she remembered most was the embarrassment of the young teenager and him nudging her back. Speaking can be heartfelt or mindless and to speak the truth always runs a risk of causing offense but we get better with practise. Speaking, or simply being there in support, is about being a mensch, doing the right thing. Its also about finding your own power. There is nothing more powerful than getting busy with a little messy emotion. Often its about listening, an extended wait that allows someone, if there is time or inclination, to share the truth. Too much small talk can be dangerous to your emotional health. A little small talk with a receptive open ear and heart can go a long way.



These were some of my thoughts after reading Rabbi Landsberg's web log Behind the Veil [in memory of Sasha Bella Stein Blumberg] where she shares newfound new mother emotions and likens web logs to processes of personal revelation. Imagining God's thoughts is an awesome lifelong endeavour. Imagining a bereaved person's thoughts when a loved one slips through a crack in their world may be hard but we can ask the bereaved. And then over the next few days the symbol of the veil expanded to touch on so many areas of life.

It has potent religous and philosophical meaning. Judaism, Islam and Christianity all controversially call for women to veil their heads. The temple was divided into 3 areas: for the public, for the priests, and behind a veil was the holy of holies. Christians believe this veil was broken with their revelation of Jesus of Nazareth as the messiah. As the Rabbi writes, the expression 'behind the veil' attempts to understand how God sees the world. Or to try see God acting behind 'nature'. A bedrock of modern capitalism is the "corporate veil". Within philosophy, there is the "God's eye view" as the answer to the subject-object dilema. The radical "veil of ignorance" from John Rawles holds that a just system requires those making the rules to be ignorant as to their own final status so that outcomes are fair whatever your social position. Where those making decisions know their place then "veil rules" can hide the impact of the decisions. And surely veils are as much about revelation as about deception as the destructive and positive power of states and supra national corporations are veiled with self serving propaganda and mythology. Boston University titled a 2002 conference "Behind the Veil: Reporting on the Drug and Biotech Industry".

I have never experienced more emotion and spiritual wonder than at SickKids Hospital, hoping for a medical miracle, another intervention that would help Sasha more than harm her or threaten her already fragile quality of life. I now see hospitals, like many other institutional spaces where lives are saved and others die, as holy ground. And like all institutions, hospitals have their own institutional veils, foremost to protect patient confidentiality but also in the highly specialised knowledge and language of the doctors and nurses. Formally, SickKids is committed to empowerment of the patient and an evolving ideal set of core principles termed Family Centred Care which we experienced. It is continual work to embed them within the practise of all interactions with patients and families. They appear in For Families > Coming to SickKids and in a more potent and ideal form in Volunteer > Family Advisory Committee section

1. families receive the information and support they need throughout the course of their children's treatment;
2. each family's beliefs, traditions, and ways of coping are respected;
3. families are invited to share their knowledge of their children and their suggestions for their children's care, to ask the question they want and need to ask, and to help identify the goals for their children's care;
4. families participate actively in all of their children's care and become full members of the care teams
   

These empowering guides are missing from the Strategic Directions call to action.

Toward the end of Sasha's life we met with palliative care workers and they pulled aside another veil which challenges the seemingly uncontroversial urge to intervene and hope for a medical miracle. In some cases, hope can be a four letter word. The natural state is the damaged and deceased and compromised body, our surgeons acting as the hands of God is not recent but the tremendous success are less than a 100 years old. We benefit from hearing 'curative' and palliative options throughout. With Sasha, we were clearly told by her cardiac surgeon that he would do his best but that based on the specific circumstances he could not be optimistic and there was no cure. We did not factor sufficiently the state of her liver into that conditional equation. Ultimately the final veil was Sasha's own physiology: she was not only beyond perfect knowledge but also complex enough to challenge multiple care teams at a world class paediatric hospital. Our hope is that we can see some institutional lessons together to strengthen the hospital in tiny but meaningful ways as a tribute to Sasha's memory. And so we humbly explore this veil and the family centred care principles that push aside this veil as every moment with careworkers are moments away from sick children.

Six months

Sad today, sitting under the early morning sky, imagining Sasha's face covering the horizon over the houses across the road. No matter how busy we get with sister Mia and little projects it does not yet take away the daily raw moments.

Is this what is mean't by 'time heals'? Knowing the passage of time will dull and flatten the emotional peaks and troughs, I can only relish the rawness, catches in the throat, wet eyes when her voice or hummingbird hands float past me in a memory. I am still working through the finality of our peach's death.

The little waves of depression and anger, eagerness to figure out what else we could have done, these streams of thought come and go, along with moments of disbelief. It amazes me that after all we went through up to her death that she can sail into my mind and I can at times still feel that click, she is gone.

This week I bumped into Maria Rugg of Sick Kids Palliative Care while taking Mia to her paediatrician Dr. Peer. I have had many contacts with Sick Kids of the last 6 months and they help me remember how hard we all worked and how strong she was and how many other kids are being helped and will be helped by Sick Kids.

And Maria asked 'How are you doing?'. It is such a powerful question. And it amazes me how many people miss the power of these few words, perhaps feel unsure or scared as if feeling around a scab that you dont want to dislodge. Or perhaps they feel the time has passed. I assure you the time has never passed.

Friends who I never informed, neighbours on the street who didnt visit, old aquaintances who acknowledge 'You have had a difficult time' but dont mention Sasha's name. I can understand the reluctance. Connect when you are unsure. Dont say too much, you dont even have to say anything, just listen to the answer. The question and open heart says it all.

We love you Sasha.

Reconnecting with GI at Sick Kids Hospital

Today I called Connie, the nurse practitioner for the liver clinic at Sick Kids. I left her a message saying we wished to connect with her and Dr. Ling, Sasha's gastroenterologist. Connie called back within the hour and we caught up; she had been thinking of Sasha as the anniversary of her surgery approached and was enthusiastic to reconnect. We are interested in support for the Alagille Syndrome liver and also broader issues like cardiac surgery impact on liver and infant portal hypertension.

Wish December 14 didn't exist!

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:

• 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.