O, BABY WHERE ARE YOU?

Baby are you living free?
With clear blue skies on golden streets�
Playing music all night long?
Without a care in this old world?

Does Zaide Bruce cook steak & beans�
Black eyed peas and turnip greens?
Are there freezies and blueberries in a bowl?
Fresh hot cookies on the stove?

O, BABY WHERE ARE YOU?
ARE YOU HAPPY, LIFE'S SO NEW?
FREE FROM PAIN & SORROW NOW�

Baby ... are there moonlit strolls?
Falling stars, fresh fallen snow?
Does the wind blow through your hair?
Do dandelions grow everywhere?
And, is there bluegrass, do kids sing?
Can you skip rocks in a stream?
Are you dancing in the rain?
To your Granny's sweet refrain�

O, BABY WHERE ARE YOU?
ARE YOU HAPPY, LIFE'S SO NEW?
FREE FROM PAIN & SORROW NOW�
O BABY WHERE, (O BABY WHERE)
WHERE ARE YOU?

Does Sammy Sam ... bark at night?
The fireplace burn, is there moonlight?
Can you bang on the guitar string?
And jiggle, dance and sing?

SMOKY RIVER BOYS 2004/2005

with some edits by Dad

Sasha in the water taxi

I was on a small speed boat and we were cruising along at a safe clip. The woman driver said she helped transfer Sasha. Before I could place her among Sasha's many movements through the hospital, she said why don't you have a look at her and she pointed to a capsule. I was shocked, Sasha had been at sea for three months! She saw my surprise and said Yes I drop them off at the end of my vacation so they can enjoy the sea air. I folded up the plastic visor that I could now see was sparkly with condensation that reminded me of the oxygen boxes in CCU and peeled back layers of soft blue blanket until, lo, there was a little child. And I was startled because she looked different. Salt was encrusted under her eyes and her face was skinny and she looked as she did as a baby, almost birdlike with big intense brown eyes. And she smiled a big smile when she saw me just as she did and she wriggled a hand free of her t-shirt and I got a glimpse of leads and monitors on her chest and I reached for her. Smiling she turned onto one side to go back to sleep, just as she used to. There were loud little children running by the door so I went to hush them and as I returned to the boat I woke up.

It was 4.30 am and I was awake and decided to go to Vesta lunch for a steak and eggs. I needed a cry and went downstairs and opened the blackberry and through tears saw an anonymous comment on grief that was a good coincidence at this precise moment and how wonderful to glimpse such a special water taxi.

9 months and it doesnt get easier

Sasha, you are all around us, every day we think and speak of you. The other day we were talking about your sister's three little front teeth and we remembered how you grew your second group of teeth while sedated during the 5 weeks of CCU and that you didnt know what to do with your new teeth when you woke up. Mom is planning a walk through Cedarvale for June 3 and that will be a very special day for us. We so miss your delicious voice and energy. Life is much quieter. When I get sad I think really hard about you and listen really hard for the words I am OK Daddy. Kinda silly, except we so wish you were here playing with us still. As your sister grows we keep thinking about how you rolled and crawled and ate and we know that soon we will not be able to do this comparison because your sister will be older. You are frozen in our memories and that makes us sad but we are so happy to have known you peach.

SickKids Cardiac Nurse Award for Excellence in Family Centred Nursing Care

Thanks to the help of SickKids Heart Centre nursing staff, we are very happy to announce the first award at SickKids in tribute to Sasha, The Sasha Bella Award for Excellence in Family Centred Care to be given to a Heart Centre nurse yearly.

We are very happy to help in any small way to inspire excellence in family-centred care practices especially in cases of multi-organ challenge, palliative care or multi-service care and we are gratified to see the creation of a multi-disciplinary and inter-professional committee for the award.

There are a number of criteria that can be used separately or in combination including the nurse's clinical excellence in support of family-centred care which is described as:

"nursing practice that demonstrates above average knowledge, skill and judgment in alleviating the impact of illness on the child and family or supporting the child and family during end-of life care. This includes facilitating family involvement in decision-making and direct care, assessments of family needs or stressors, identification of appropriate resources, culturally sensitive care, sensitivity to family communication, devising strategies to enhance family coping, and when needed, early integration of Palliative Care."

Many thanks to Cecilia St. George-Hyslop, Judith Wilson, Linda Fazari, Denise Ferreira, Karen Kinnear and Bonny Fleming-Carroll for helping push this through quickly for nursing week. Thanks to Dr Jennifer Russell for her support of this nurse award.

miss you

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.