...though soft you tread above
We think of you every day, in every way, happy and sad, crappy and mad, and mostly just glad glad glad we knew you. We talk of you every day sweetie. Mia is now playing with your pink pig and your fridge country music animal game you loved so much. On this sad anniversary, here's a song I used to whistle to you, you probably heard it at the big house because Terry loves to belt it out. We changed some words for you. O Danny Boy apparently isn't from Ireland but that is ok because you ain't either, despite your fire and rightous love of potatoes. You know we love you peach more than we can say.
And here's your sister Mia wearing one of your favorite jerseys. Hi sister Sasha!
O Sasha girl, the pipes, the pipes are calling
From glen to glen, and down the mountain side
The summer's gone and all the roses falling
It's you, it's you must go and we must bide
But come ye back when summer's in the meadow
Or when the valley's hushed and white with snow
For we'll be here in sunshine or in shadow
Oh Sasha Bella, oh sweet peach, we love you so
But when ye come and all the flow'rs are dying
If we are dead, as dead we well may be
Ye'll come and find the place where we are lying
And kneel and say a HI HI there for we
And we shall hear though soft you tread above us
And our graves will warmer, sweeter be
For you will bend and tell us that you love us
And we shall sleep in peace until you come to us.
And here's your sister Mia wearing one of your favorite jerseys. Hi sister Sasha!
Tissue Plasminogen Activator and Management of Complicated Parapneumonic Effusions
Effectiveness and Safety of Tissue Plasminogen Activator in the Management of Complicated Parapneumonic Effusions concludes "Early administration of intrapleural tPA seems to be a safe and potentially effective treatment in children with complicated parapneumonic effusions. Randomized controlled trial evidence is needed to confirm this finding."
Dec 30 23.50 tPA lung dilated to 2 ml NS
(time? @ [crossed out] Put 2ml in ob?structed lumen (don't flush)
Leave 2h in site
Pull back thereafter, then flush with NS [normal saline]
Dr. T. Jaecklin
Dec 30 23.50 tPA lung dilated to 2 ml NS
(time? @ [crossed out] Put 2ml in ob?structed lumen (don't flush)
Leave 2h in site
Pull back thereafter, then flush with NS [normal saline]
Dr. T. Jaecklin
Bringing Bravery Hearts to Red Cross Children's Hospital in Cape Town
Canadians Corinne Bloom and Darren Enkin created the Bravery Hearts program to recognize sick kid's bravery and to make them smile. The program begun at SickKids Hospital in 2003 and is now at over 20 paediatric hospitals across North America. Toronto based Sandylion Sticker Designs, the world's largest designer and manufacturer of stickers and scrapbooks, supplies SickKids patients with stickers and these gifts cue family and friends to buy their own favorite stickers as drop-by gifts.
Sasha loved peeling and sticking and stuffing her bead necklace into her ice cream container and feeling the different coloured and shaped beads. Recently Sasha's grandfather Henry visited Red Cross Children's Hospital and its fund raising armThe Children's Hospital Trust and they loved Bravery Hearts and so we are excited that Darren and Corrine will help bring the program to Africa (and will make sure there are lots of stickers too). The 50 year old Red Cross War Memorial Children's Hospital is affiliated with University of Cape Town for paediatric research and as the largest paediatric hospital in Africa takes on complex referrals continent-wide.
Sasha loved peeling and sticking and stuffing her bead necklace into her ice cream container and feeling the different coloured and shaped beads. Recently Sasha's grandfather Henry visited Red Cross Children's Hospital and its fund raising armThe Children's Hospital Trust and they loved Bravery Hearts and so we are excited that Darren and Corrine will help bring the program to Africa (and will make sure there are lots of stickers too). The 50 year old Red Cross War Memorial Children's Hospital is affiliated with University of Cape Town for paediatric research and as the largest paediatric hospital in Africa takes on complex referrals continent-wide.
Pillow Angel: freezing growth
When I first read about Ashley I could only respect the incredibly difficult situation she and her parents were in. Aside from the sympathetic overviews of the ethics and critiques of the parents choices and the incredible respect for the care they put into explaining about Ashley on their blog I thought of a fragment of a conversation we had during one of Sasha's clinic visits as we waited in her cardiologist's office: if only she didn't grow anymore she wouldnt need more cardiac surgeries.
Releasing the spirit
Bubby was with Sasha when she died and she felt her spirit leave as Sasha's chest heaved the last time and she no longer saw Sasha in her body. We are not our bodies she said, our smile and nature and those things that make us who we are are in our souls. When her husband died it felt right to donate all the clothes to Goodwill although a daughter asked her how she could give away Daddy's clothes. Bubby passed on Peter Goddard's review of Robin Pacific's "Shelf Portrait" whose installation is designed to give away a large collection of her and her husband Terry McAuliffe's books: "I've kept some things. I gave some things to family and some to Goodwill. The last things I'm giving away are his books. It's as if his mind and psyche were leaving the house." In the words of the Redhead Gallery: "Shelf Portrait is an exhibition that renders an act of generosity into a work of art." What a wonderful act of generosity. Its as if she no longer feared needing to keep his books to be close to his spirit. I would setup a collection next door of Sasha items we cannot conceive of letting go yet. Bubby keeps her fathers keys hanging in her kitchen and together with a pail of copper nails are objects that reconnect her to her father. She recently decided to become an organ donor because although she didn't mind her dead body feeding the earth she thinks the better way is to donate organs that live on and help another soul's body.
Shelf Portraits runs to January 27. The Redhead Gallery is open Wed-Sat 12-5 at 401 Richmond Street West, Suite 115
Shelf Portraits runs to January 27. The Redhead Gallery is open Wed-Sat 12-5 at 401 Richmond Street West, Suite 115
For the fathers: tools for male grief work by Stephen Jenkinson
People shared ideas on death and an afterlife in their words of solace: Sasha is in a better place, she put back on her angel wings, she is at peace, she is no longer in pain. We achnowleged Sasha was dying and accepted and then embraced her return home after councelling at the Temmy Latner Centre. We all struggled to articulate Sasha's death and engaged in a discussion on the Alagille Board: how could Sasha be in a better place (ultimately) when she was no longer with us? We flipped back and forth throughout the decision to cease blood transfusions. Were we only thinking of her life quality or of our convenience? Had we done enough, not enough or too much? Many people gave us a lot of support. One person gave us permission to grieve and specific ideas to work with her life and death and I recently reread "On Grief: A Workshop for Men", one of many useful sharings traversing grief work, money, inheritance, relationships, shamanism, souls, hand-made objects, wilderness, life's tasks and more. They encompass notions of the veil in at least two ways and offer a relevant strategy to anyone who has lost loved ones, particularly fathers and brothers. Rather than summarise as is customary, I wish to place Stephen's words directly on Sasha's blog as we place little stones when we visit Sasha's grave.
"Death is a rumour for most of us. It is something we hear about second hand. All kinds of institutions are set up whose unacknowledged purpose is to shield us from the direct experience of death, loss and the diminishment of life, whether it be our own or that of a loved one, friend or neighbour.
When death comes close, most of us who are otherwise competent adults become stumbling, inarticulate amateurs. Approaching death deliberately and consciously is very hard to do. For a lot of reasons, this experience is a particularly punishing and humiliating one for men. We become strangers to the people around us and to ourselves, and often we are deeply disappointed in our responses. We think women grieve better.
Grief is work for all of us. It is part of a life's work...In grief rituals we are practicing behaviours that consciously and intentionally move us out of our ordinary awareness and into the experience of the pain of grief. The important aspects are that you do it consciously and that you in some way honour and acknowledge your grief in the process. Men in our culture grieve through task.
For a man to share his grief, he needs to know that he is respected. For a woman to share her grief, she needs to know that she will be related to. The work of talking about their grief is usually put off until the men know that they have the respect of the other men. They see their grief as a burden ... that their grief has no purpose or meaning.
...A common thread in the world's wisdom and shamanic traditions is the identification of forgetfulness or amnesia as a threat to spiritual wellbeing, individual, communal and cosmic. Knowing about good and evil was an iffy proposition in the Garden of Eden, but once known, the story goes on to show, the consequences endure. In the West, we tend to have an unexamined, undisciplined, untested and unconscious view of the dead. Typically, we nurse along the conviction that those who have died somehow know more than we know. Their passage out of this world has bestowed upon them this 'higher consciousness'. They know everything, and this knowledge has been bought with their life. In that respect they join God and share in God's omniscience.
A subtler piece of this conviction is that those who have died have passed beyond the experience of need. They have been taken up by the Shepherd and no longer want. Having no needs, no desires, they are free and they are at rest. They live far beyond this veil, subsequently, and their achievements in death remove them from us. When a loved one dies and leaves us behind, our experience is typically an awe-ful, sharply felt need for the old companionship, the old attachment, the old assurances that came with the deceased's presence. Part of our suffering comes from the inevitable conclusion that we are alone in needing this attachment. The need is from one direction only.
Many men have told me of the grim, defeated experience of trying to retain some furtive presence of the loved one, somehow, and of how futile these attempts seem, how impossible, and of how mute the other side is, and of how unpresent. There is a lot of anger in this experience, and under that a lot of sorrow, and under that a lot of psychic and spiritual poverty....
Martin Prechtel says that "every Tzutujil started out in life as a sincere amnesiac who spent the rest of his or her life putting back together his or her memory of the other worlds, enough to serve the greater good of the village and the World". That is a beautiful phrase - sincere amnesiac - because it brings very well the wobbly intention that is both good and errant: the Tzutujil person commits himself or herself to try to remember something they don't at present even know - for what purpose they were born. Part of life's project for these people is to discover that they have a life's project, and what it is. A hint is to be found in the stories that tell of the world the soul has come from, into this one.
To redeem the rememberer in his or her wobbly pursuit, Mayan spirituality proposes a perfect symmetry. The gods, the spirits, the ancestors - Those Not Here Now - depend on this very remembrance as their food and sustenance. A little remembering of them makes them present, brings them near, encouraging the memory of them a little more, bringing them nearer still, everyone in the circle nourished by the passing around of this gift.
Death is a very good teacher. Someone else's death has a great deal in it for you, and your own death even more. The imminence of death rattles the old patterns of automatic thinking, involuntary obedience, unconscious suffering. It dares you to find them still meaningful, purposeful, necessary."
"Death is a rumour for most of us. It is something we hear about second hand. All kinds of institutions are set up whose unacknowledged purpose is to shield us from the direct experience of death, loss and the diminishment of life, whether it be our own or that of a loved one, friend or neighbour.
When death comes close, most of us who are otherwise competent adults become stumbling, inarticulate amateurs. Approaching death deliberately and consciously is very hard to do. For a lot of reasons, this experience is a particularly punishing and humiliating one for men. We become strangers to the people around us and to ourselves, and often we are deeply disappointed in our responses. We think women grieve better.
Grief is work for all of us. It is part of a life's work...In grief rituals we are practicing behaviours that consciously and intentionally move us out of our ordinary awareness and into the experience of the pain of grief. The important aspects are that you do it consciously and that you in some way honour and acknowledge your grief in the process. Men in our culture grieve through task.
For a man to share his grief, he needs to know that he is respected. For a woman to share her grief, she needs to know that she will be related to. The work of talking about their grief is usually put off until the men know that they have the respect of the other men. They see their grief as a burden ... that their grief has no purpose or meaning.
...A common thread in the world's wisdom and shamanic traditions is the identification of forgetfulness or amnesia as a threat to spiritual wellbeing, individual, communal and cosmic. Knowing about good and evil was an iffy proposition in the Garden of Eden, but once known, the story goes on to show, the consequences endure. In the West, we tend to have an unexamined, undisciplined, untested and unconscious view of the dead. Typically, we nurse along the conviction that those who have died somehow know more than we know. Their passage out of this world has bestowed upon them this 'higher consciousness'. They know everything, and this knowledge has been bought with their life. In that respect they join God and share in God's omniscience.
A subtler piece of this conviction is that those who have died have passed beyond the experience of need. They have been taken up by the Shepherd and no longer want. Having no needs, no desires, they are free and they are at rest. They live far beyond this veil, subsequently, and their achievements in death remove them from us. When a loved one dies and leaves us behind, our experience is typically an awe-ful, sharply felt need for the old companionship, the old attachment, the old assurances that came with the deceased's presence. Part of our suffering comes from the inevitable conclusion that we are alone in needing this attachment. The need is from one direction only.
Many men have told me of the grim, defeated experience of trying to retain some furtive presence of the loved one, somehow, and of how futile these attempts seem, how impossible, and of how mute the other side is, and of how unpresent. There is a lot of anger in this experience, and under that a lot of sorrow, and under that a lot of psychic and spiritual poverty....
Martin Prechtel says that "every Tzutujil started out in life as a sincere amnesiac who spent the rest of his or her life putting back together his or her memory of the other worlds, enough to serve the greater good of the village and the World". That is a beautiful phrase - sincere amnesiac - because it brings very well the wobbly intention that is both good and errant: the Tzutujil person commits himself or herself to try to remember something they don't at present even know - for what purpose they were born. Part of life's project for these people is to discover that they have a life's project, and what it is. A hint is to be found in the stories that tell of the world the soul has come from, into this one.
To redeem the rememberer in his or her wobbly pursuit, Mayan spirituality proposes a perfect symmetry. The gods, the spirits, the ancestors - Those Not Here Now - depend on this very remembrance as their food and sustenance. A little remembering of them makes them present, brings them near, encouraging the memory of them a little more, bringing them nearer still, everyone in the circle nourished by the passing around of this gift.
Death is a very good teacher. Someone else's death has a great deal in it for you, and your own death even more. The imminence of death rattles the old patterns of automatic thinking, involuntary obedience, unconscious suffering. It dares you to find them still meaningful, purposeful, necessary."
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