We struggled with the purpose of Sasha's life. She lived for 744 days. She laughed with us and smiled and loved and showed great joy yet she also cried whenever she awoke until she had her bottle in her mouth. The hospital took every effort to control the pain of all their interventions. Outside the hospital, we think she experienced great discomfort from the itching caused by her Alagille Syndrome and we expect she suffered some discomfort as damaged liver continued to swell and develop suspected portal hypertension. After the second surgery complications she suffered morphine withdrawal, developed a jejunal fistula and went without any food for over two months. Fed by a permanent IV during her last 6 months of life, she scratched at where the tubes entered and were sutured to her flesh. She experienced so many pokes and pricks. She could never tell us her pain nor could we explain it to her. Despite everything she experienced she never feared needles or cap changes or nurses or doctors or the hospital doors. This blog is testament to her determination and spirit.
Within the Buddist tradition, the soul accrues karma by suffering and devotes believe Sasha chose us because we could give her the love and care she needed. Within the humanist tradition she was defined by a missing gene and her life spurs us to knowledge and shows the potential compassion of our society. Within the Jewish tradition from Kabbalah she could be a Gilgul or reincarnated soul who returns to earth for a short time to fulfill a purpose. Within some indigenous traditions she is now in the spirit world and needs to be fed with remembrance and good deeds that bring her honour. As a humanist, born into a Jewish family, the best way I can approach why she was here and how I reach her 'there' is to connect reincarnation in Buddism and a strand of Judaism (Kabbalah) to the indigenous and Eastern notion of 'feeding' the dead. So I feed this Gilgul I was privelaged to know by learning lessons from how we cared for her and helping other kids in need.
Living with Sasha's spirit
We have been struggling with the direction of this blog. How to maintain a focus on Sasha over time rather than, as it felt, ourselves and our anguish and fears and hopes? Sasha and us are inextricably bonded and we are the light to her memory and the tribute to her potential and the connector to all those she never met. But as the months pass, we struggle to feel the transcendent beauty of Sasha from the memory fragmentation caused by the experience. There have been fewer and fewer pink entries: Mom dreams of Sasha all the time, Dad doesn't but the blog is part of his awake dreaming. To remember in the sense of reattaching is to reconnect body and spirit. If death does not make us spiritual geniuses as Stephen Jenkinson reminds us, it does sensitize us to the spirit. After life, there is spirit. In life there is spirit. Sasha's spirit, I conclude, is all around. We simply have to feel it. To reconnect and remember in a positive way is to build new moments with Sasha in our lives as we help others. This is one positive sense of the notion 'move on' that we struggle with; so not move away from pain or grief or anger but live with her in new moments in a new world, where we re-member a dismembered daughter on a new path in a wider world where this peach now plays. The future of this blog is to travel in a new world of connections and networks and initiatives and kid's smiles where Sasha's spirit will be happy.
And Sasha's spirit is on the go, reaching out to be lifted, calling out in excitement and discomfort, walking hand over hand in an intricate coordination of little feet shuffling skinny legs supporting a swollen belly, long delicate fingers always exploring and touching and shining yellow eyes radiating, supervising, learning and loving, oblivious to her remarkable physiology, huffing and puffing without fear of the gods swirling around the hospital.
And Sasha's spirit is on the go, reaching out to be lifted, calling out in excitement and discomfort, walking hand over hand in an intricate coordination of little feet shuffling skinny legs supporting a swollen belly, long delicate fingers always exploring and touching and shining yellow eyes radiating, supervising, learning and loving, oblivious to her remarkable physiology, huffing and puffing without fear of the gods swirling around the hospital.
Remembering the dead, wondering about the meaning of a life
While we were in hospital and realizing that Sasha was nearing the end of her life we also realised that we couldnt easily remember her pre-hospital times. When she was intubated we worried we would never hear her voice and would play over her little sounds between us. All those moments over eighteen months started to pool like mercury around 'memories' from photos and videos. We work to remember and feel other memories. It is scary to have difficulty remembering the reality of our time with our flesh and blood.
Is it because Sasha was with us only twenty four months? Was it some conditionality in our focus imposed by her uncertain prognosis? Or because we were tired during the good times and very tired during the 5 final months at SickKids? Did grief at the end while she was alive blur earlier memories? Did I spend too much time behind the camera lens. As I stop to deeply think back, memories return. I just thought about being with her, rocking her to sleep with my hand on her back, wondering how much time we had left together. I had those thoughts many times, during the good times and the bad. The memories do come back with work but it has only been 6 months.
When people do work as a tribute to their dead child, it is both to help others and to perpetuate a memory of one who was once alive. Why are children born who cannot survive? Why did she die? Where did she go after death? What could we have done differently? What was learned from her life?
Is it because Sasha was with us only twenty four months? Was it some conditionality in our focus imposed by her uncertain prognosis? Or because we were tired during the good times and very tired during the 5 final months at SickKids? Did grief at the end while she was alive blur earlier memories? Did I spend too much time behind the camera lens. As I stop to deeply think back, memories return. I just thought about being with her, rocking her to sleep with my hand on her back, wondering how much time we had left together. I had those thoughts many times, during the good times and the bad. The memories do come back with work but it has only been 6 months.
When people do work as a tribute to their dead child, it is both to help others and to perpetuate a memory of one who was once alive. Why are children born who cannot survive? Why did she die? Where did she go after death? What could we have done differently? What was learned from her life?
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.
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
- families receive the information and support they need throughout the course of their children's treatment;
- each family's beliefs, traditions, and ways of coping are respected;
- 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;
- 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.
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