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

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