This evening I was seeing little pictures of her in my mind. Photos of her sitting and smiling, standing one hand on a door lintel. And then I looked around the living room, placing the photos around the room. Her black sweatshirt with the colourful trim lay spread on the back of the chair. The room seemed so small, the space seemed bigger in the photos. So full of life and colour.
Sometimes when we look at photos and we click through them quickly there are sequences where we took five or six shots and it's like she is jiggling, turning, smiling, looking away. Like one of those flip books. And so we keep flipping through the memories, revisiting the smiles and trying to flick away the tubes and blood and puffiness.
I miss her, I just miss her. Mamma looked so sad.
Sasha's first paddle
The last few weeks you have been especially close to us sweet peach as we work with SickKids on cardiac and palliative nursing awards for family-centred care. We have been tidying up the basement and we brought upstairs all those clothes of yours that Momma packed away because they made her sad. Your little sister is already too big for most of them, so they will remain yours, we will never give them away. Mia is now flicking her hand on everything she likes to touch, it reminds us of your beautiful long fingers and how you would flick the tips of your fingers through books and cards, touching everything in site. It is so quiet in the house as your sister doesn't make nearly as much of a commotion as you used to sweet little girl. You would love her to bits. As time goes by our amazement at having you and spending just a little time with you grows. We think of you everyday Sash. Here is a picture of a lovely afternoon in the summer of 2005 when we pulled out the blowup pool for your first backyard swim and put our toes together in the cool water. We worried the cold water would make you blue so we added hot water, it was lovely to see you in your cute little bathing suit splashing. We miss you so much little one. I was looking at my records which I never got to show you. I wished I could play you more music.
Out of the blue and into the black
They give you this, but you pay for that
And once you're gone, you can never come back
When you're out of the blue and into the black.
Hey hey, my my
There's more to the picture
Than meets the eye.
The Queen is gone but she's not forgotten...
Neil Young
From Granny and Gramps
Hi Pam and Jon.
The 20th is always a special day of remembering Sasha. We think of her often and now know that another part of the process is being planned with the date for the unveiling. We are grateful for her – for the blog and all the pictures of Sasha, the special thoughts and emotions, and so many memories
Fondest love to you both and the biggest squeeze and hug for Mia.
Henry and Marcia
The 20th is always a special day of remembering Sasha. We think of her often and now know that another part of the process is being planned with the date for the unveiling. We are grateful for her – for the blog and all the pictures of Sasha, the special thoughts and emotions, and so many memories
Fondest love to you both and the biggest squeeze and hug for Mia.
Henry and Marcia
watching you happy sad
Sash, watching your videos and pictures as we do so often, we so miss your sweet little voice we heard almost every hour of every day. So cute. So delicious. It's hard to see your big belly now and unbearable to see the fistula that your life drained out of. We loved twirling through life with you sweet peach, we wish it was easier for you and we could know you longer.
In memory of Dr. Beverley Antle
On November 11, 2006 Dr Beverley Antle died tragically in a car accident on the way to a conference. Her obituary by Catherine Dunphy, A force for good with a zeal for life records her close involvement with family and friends facing death, and powerfully conveys her success in paediatric social work and her fun side. This exerpt looks at her contribution:"She was the powerhouse behind uniting frequently independent-minded provincial social work associations in adopting a substantial Canadian-wide code of ethics. For the past couple of years, she'd criss-crossed the country – travelling two weeks out of every month – to make that happen. She wasn't paid extra for this, but she got a lot of thank-you plaques. She was an academic and clinical specialist in the University of Toronto's department of social work, a job that involved getting funding for research into children's health. One of her last proposals was for a grant to study the effect of hope on terminal illness in children. The idea fascinated her, and the job fulfilled her, which is why she told her employers she would also do the previously full-time job of director of the PKU program at the Hospital for Sick Children – but on a part-time basis. Phenylketonuria is a genetic disorder, and Antle was the first social worker, a non-medical person, to head up such a program. She taught three courses at U of T and was about to take on a course at Ryerson University. She slept five hours a night, max. She'd be up at 1 a.m. doing a position paper and again at 5:30 a.m. cleaning the bathroom. Her dining-room table was usually covered in papers. There were outlets all over her small east end house for her laptop. She multi-tasked like few others. She could simultaneously cook a gourmet meal in her kitchen, dream up a grant proposal, critique the work of students, send off emails and watch TV. When she was working on her PhD dissertation, she was the only student ever allowed to have two computers and printers to work on simultaneously. Yes, she was in a hurry. "She wanted to do it all. She was making a better world," said her husband, Phil Ferguson. Antle, 47, believed that social work needed research to substantiate what it did, to be taken seriously. Single-handedly she wrote up 59 successful grant proposals to make that happen. Her broader goal was human rights for all, but especially children with disabilities, including HIV/AIDS. "Beverley was very focused on the profession needing to take a stand to be a voice," said MacKenzie Davies. "She was a visionary."
The In Memorium by the University of Toronto powerfully convey her focus on expanding family centred care practises and end of life decision making supports:
"Antle brought a 25-year history in pediatric health care and a long-standing interest in fostering family-centred care to her research activities. She played a lead role in developing and studying novel clinical approaches aimed at improving the overall quality of life for young people with PKU (phenylketonuria) — a genetic disorder characterized by the inability of the body to utilize the essential amino acid, phenylalanine — and other complex, chronic health conditions. As director of the PKU program at the Hospital for Sick Children, she was the first social scientist to hold a leadership position in metabolic genetics in Canada and developed innovative psychosocial interventions to enhance quality of life. Among her areas of interest and expertise were improving patient and family participation in treatment, fostering successful transitions for young people with chronic health conditions and physical disabilities and developing professional interventions to support parents of these young people, as well as bioethics and the complexity of treatment decision-making."
While reading her bio at the SickKids, I was struck by one research paper: Can we ease the burden? Parents experiences of end-of-life decision making Antle, B. J., Cottingham, D., Ghelani, K., Gorman, E., Harrison, C., Harrison, Ch., Martin, M., B. N. (2001-2002) Funded by The Bayer Institute On Health Care Communication (US)
Additional voices in memory are offered at the website of the Ontario Association of Social Worker.
Sasha at 5 months
There's traffic in the sky
and it doesn't seem to be getting much better
There's kids playing games on the pavement
Drawing waves on the pavement
Shadows of the planes on the pavement
It's enough to make me cry
But that don't seem like it could make it feel better
Maybe it's a dream and if I scream
it will burst at the seams and
this whole place will fall into pieces
and then they'd say...
Well how could we have known?
I'll tell them it's not so hard to tell
if you keep adding stones
soon the water will be lost in the well
Puzzle pieces in the ground
but no one ever seems to be digging
Instead they're looking up towards the heavens
with their eyes on the heavens
the shadows on the way to the heavens
It's enough to make me cry
but that don't seem like it would make it feel better
The answers could be found
we could learn from digging down
but no one ever seems to be digging
instead they'll say...
Well how could we have known?
I'll tell them it's not so hard to tell
if you keep adding stones
soon the water will be lost in the well
Words of wisdom all around
but no one ever seems to listen
They talk about their plans on the paper
Building up from the pavement
there're shadows from the scrapers on the pavement
It's enough to make me sigh
but that don't seem like it would make it feel better
The words are all around
but the words are only sounds
and no one ever seems to listen
Instead they'll say...
Well how could we have known?
I'll tell them it's really not so hard to tell
If you keep adding stones
soon the water will be lost in the well
lost in the well
jack johnson 2003 the moonshine conspiracy records
Interprofessionalism: A culture of caring
By Michele Chaban, MSW, RSW, PhD, University of Toronto, University of Wales, Wilfrid Laurier University
as published in "The Newsletter of the Rapid Response Radiotherapy Program of Toronto Sunnybrook Regional Cancer Centre" August 2006
...The world teaches us that cultures collide. Cultures in health science are no different. Inter-professional thinkers such as Ivy Oandeson, Chair of Inter-Professional Studies at U of T, suggests that health science is a culture and each profession is its own distinct culture. The disciplines bring their diverse ways to all our processes in the hopes of enhancing outcomes in patient care, education, research, etc. Conflicts within teams or between professional cultures are often based on competing values, beliefs and practices. The conflict can escalate for many reasons, but de-escalation takes place through dialogue and time. It is my experience that this can build and fortify a team. Not dealing with the conflict, or having one culture determine processes and outcomes encourages cultures in conflict. Patients, families and professional caregivers suffer for these value based battles.
If you consider inter-professional teams as cultures, ask yourself: does your team exhibit cultural competence between and amongst the disciplines? Is there a democracy of disciplines or a dominant profession? If so, does this dominant culture use its position to facilitate the other disciplines or determine them? What will you do to maintain the mosaic of care?
How we retain Canadian values in Canada’s health care system is more complex than having a food fair at lunch. Honouring diversity means the once hierarchical models of practice must flatten and function as inter-professional teams equitably. The once-separatist silos of the professions will hopefully build bridges between and amongst themselves while not losing the inherent integrity of each professional culture, while allowing patients and families access to all disciplines. To have equity and access, the team must educate each other and those they serve. This means a body of knowledge must be created, conveyed and be available on a continuum for those who need it.
How can this be done? Firstly, viewing ourselves as distinct cultures changes the phenomenology of how to view and interact with inter-professionalism. It bears more responsibility for all of us, especially the dominant culture(s). Secondly, consultation and collaboration are skill sets we acquire, but are seldom taught. It is assumed we know how to exercise this specialized form of communication. Learning how to consult and collaborate within an inter-professional team is one step towards enhancing team function, dealing with inter-professional diversity, honouring difference and, most importantly, mediating inter-professional cultures. Being true to Canadian values in our health care system means finding a way to honour our differences and build the mosaic, rather than allowing ourselves to become a melting pot, i.e., we all do bio-psycho-social-spiritual care or act as silos in solitude.
In a system dedicated to productivity, high-performance outcomes, we may have to find ways for the spirit in the machine of health care to manifest itself. We and they are human – we are more than our functioning. It is only if we exercise our humanness, both at the bedside and with each other, that we will keep the system person-centred and able to tolerate, if not celebrate, each other’s diverse ways. Then, truly, we will be ensuring the integrity of Canadian culture in our health care system.
as published in "The Newsletter of the Rapid Response Radiotherapy Program of Toronto Sunnybrook Regional Cancer Centre" August 2006
...The world teaches us that cultures collide. Cultures in health science are no different. Inter-professional thinkers such as Ivy Oandeson, Chair of Inter-Professional Studies at U of T, suggests that health science is a culture and each profession is its own distinct culture. The disciplines bring their diverse ways to all our processes in the hopes of enhancing outcomes in patient care, education, research, etc. Conflicts within teams or between professional cultures are often based on competing values, beliefs and practices. The conflict can escalate for many reasons, but de-escalation takes place through dialogue and time. It is my experience that this can build and fortify a team. Not dealing with the conflict, or having one culture determine processes and outcomes encourages cultures in conflict. Patients, families and professional caregivers suffer for these value based battles.
If you consider inter-professional teams as cultures, ask yourself: does your team exhibit cultural competence between and amongst the disciplines? Is there a democracy of disciplines or a dominant profession? If so, does this dominant culture use its position to facilitate the other disciplines or determine them? What will you do to maintain the mosaic of care?
How we retain Canadian values in Canada’s health care system is more complex than having a food fair at lunch. Honouring diversity means the once hierarchical models of practice must flatten and function as inter-professional teams equitably. The once-separatist silos of the professions will hopefully build bridges between and amongst themselves while not losing the inherent integrity of each professional culture, while allowing patients and families access to all disciplines. To have equity and access, the team must educate each other and those they serve. This means a body of knowledge must be created, conveyed and be available on a continuum for those who need it.
How can this be done? Firstly, viewing ourselves as distinct cultures changes the phenomenology of how to view and interact with inter-professionalism. It bears more responsibility for all of us, especially the dominant culture(s). Secondly, consultation and collaboration are skill sets we acquire, but are seldom taught. It is assumed we know how to exercise this specialized form of communication. Learning how to consult and collaborate within an inter-professional team is one step towards enhancing team function, dealing with inter-professional diversity, honouring difference and, most importantly, mediating inter-professional cultures. Being true to Canadian values in our health care system means finding a way to honour our differences and build the mosaic, rather than allowing ourselves to become a melting pot, i.e., we all do bio-psycho-social-spiritual care or act as silos in solitude.
In a system dedicated to productivity, high-performance outcomes, we may have to find ways for the spirit in the machine of health care to manifest itself. We and they are human – we are more than our functioning. It is only if we exercise our humanness, both at the bedside and with each other, that we will keep the system person-centred and able to tolerate, if not celebrate, each other’s diverse ways. Then, truly, we will be ensuring the integrity of Canadian culture in our health care system.
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