Showing posts with label feeding the dead. Show all posts
Showing posts with label feeding the dead. Show all posts
"Does that sound strange?"
Diane Flacks checked in with us a year and a half after Catherine Dunphy visited in August 2006. I was happy that Diane focused on Pamela's story and that between candid moments you can see how parents grieve differently. We can argue about almost anything, including shopping lists, and I was about to say I don't remember any arguments between us over Sasha or her care but that isn't true. Small conversations bubble to the surface of my memory about whether to talk more with so and so, or for me not to take off an evening and go for beers with friends. Pamela's strength and presence let me checkout in some respects, at times. Each night she handed me a reminder list as she left around 11pm to endure sleepless night, pregnant and alone in our house before returning for another full long day at Sickkids. Weathering The Unimaginable was published in Saturday's Toronto Star.
Walking with Mia, Tim and Sasha's spirit
Tim Wilson met Mia and I at Cedarvale and we hit the swings and slides and then walked into Cedarvale Ravine where he filmed us for a movie on Stephen Jenkinson and palliative care. Sasha's story will be the only paediatric palliative care story in the film for the National Film Board. We walked the path that Pamela and Sasha walked almost every day, Mia loving the little foot bridges, walking across, then back and again. We met some dogs and other walkers and then chatted by the bridge that had been the turn-around point on the first Sasha Bella Walk in June. We talked about the fund-raising walk in June, differences in mine and Pamela's roles and what it meant to come home with Sasha.
You can read about Tim's projects at his website including an intriguing article on a father's tools or view shorts of 17 of his documentaries including the stunning demo short for Grief Walker on the work of Stephen Jenkinson that has been the subject of Tim's interviews with us. Stephen helped us face up to Sasha dying so that we could bring her home - -"Counselor and palliative care worker Stephen Jenkinson takes a radically different approach to the care of the terminally ill. He advises that they 'abandon false hope' and turn instead to grief. 'I teach the art,' he says, 'of being broken-hearted.' Moreover, he insists that each of us has an obligation to die well." Stephen offers the keynote tomorrow afternoon to open the 2007 Canadian Hospice Palliative Care Conference.
You can read about Tim's projects at his website including an intriguing article on a father's tools or view shorts of 17 of his documentaries including the stunning demo short for Grief Walker on the work of Stephen Jenkinson that has been the subject of Tim's interviews with us. Stephen helped us face up to Sasha dying so that we could bring her home - -"Counselor and palliative care worker Stephen Jenkinson takes a radically different approach to the care of the terminally ill. He advises that they 'abandon false hope' and turn instead to grief. 'I teach the art,' he says, 'of being broken-hearted.' Moreover, he insists that each of us has an obligation to die well." Stephen offers the keynote tomorrow afternoon to open the 2007 Canadian Hospice Palliative Care Conference.
Where I was in your final hours
You whimpered when we touched you, so I drew back. It was hard to hear that whimper as anything but discomfort, hard to imagine it was a choked purr. You were not calling us and we were so tired and we took a little respite. You were deeply sedated. And I was building your website. Because I loved you and wanted others to see you. Because I didn't know what else to do. Because I didn't want to look at your beautiful face swollen and yellow, your belly so distended, your failing organs congealing so that blood no longer flowed as it had the last week. Your granny and grampy and bubby spent time with you. We dropped in. So much preparation went into bringing you home but a year and a half later I still think about those last hours and ask what else could I have done beside upload pictures and write your story. That was OK, but not for most of your last day. You died as we sang you a song, as if you had waited and I am grateful I held you when you let out your final breath.
How does the palliative care community approach family preparations for their children and siblings final hours? At the beginning we were taken through all the signposts marking the end of life. Afterward we dressed her and I carried Sasha to the mortuary vehicle. Everything was, it seemed, as respectful and dignified and family-centred as could be under the circumstances. And when I look at a support network sheet on the final end of life information or a sensitive and detailed parent account of living with very sick children there is no mention of what parents do during the death of their child. When the breathing becomes very laboured and a nurse or doctor comes to increase the sedatives, that is a good time, if not before, to touch the parents with the moment if they are lost in grief. So they are there. Not on the computer.
How does the palliative care community approach family preparations for their children and siblings final hours? At the beginning we were taken through all the signposts marking the end of life. Afterward we dressed her and I carried Sasha to the mortuary vehicle. Everything was, it seemed, as respectful and dignified and family-centred as could be under the circumstances. And when I look at a support network sheet on the final end of life information or a sensitive and detailed parent account of living with very sick children there is no mention of what parents do during the death of their child. When the breathing becomes very laboured and a nurse or doctor comes to increase the sedatives, that is a good time, if not before, to touch the parents with the moment if they are lost in grief. So they are there. Not on the computer.
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."
Celebration of Remembering
The Temmy Latner Centre and the Max and Boutrice Woolf Centre for Palliative Care held a unique and deeply moving memorial to the children and adults who died in their care over the last year. The memorial was held in the beautiful Floral Hall at Edwards gardens which was the perfect setting with its natural stone construction and lovely flora of all kinds.
As caregivers and parents spoke, other parents and children and family members build a small but elaborate house made from sticks and boughs tied together with colourful ribbons and decorated with feathers and flowers. An oval cupped wooden frame with sheep wool was then inserted as the floor.
Into this house we placed small objects in memory of our loved ones. We put in a baby Raggedy that we bought from the 5 Fifty 5 shop at Sick Kids and one of Heather Rivlin's photos with Sasha holding her Raggedy on Mom's lap with the IV in the background.
Then the youngest and the oldest were invited to say a blessing and Henry carried Mia to stand around the house with other children and grandparents.
The tempo of the 2 hour memorial alternated between stories told from 4 microphones and the ever changing group of siblings and parents and grandparents constructing the house.
Stephen Jenkinson introduced the ceremony as a time to re-member which he said was not the opposite of forgetting but of dis-member: we were here to reconnect with people separated from us. Jennifer told us about where they found each of the items used in the house and reminded us that the trees were a short time ago living things, connected to trunks. A duo sang and played violin of a melancholy and undefined music from 'The East'. And a number of doctors shared their special memories.
I feel privelaged to know such a deeply compassionate and spiritual team of care givers and, as the team members expressed over and over, they feel privelaged to care for our dying loved ones and then supporting the families when they grieve.
One woman related how she and her partner were married at home just before Olivia's death and I could feel that same sacredness she mentioned in the care and attention put into getting Sasha home again.
A little girl named Sage who was almost two joined in several times through the evening with loud shrieks of excitement that sounded so like Sasha.
It was very special to see Russell and have him hold Mia and play with her. As we heard from other doctors and nurses and specialists, we could see that the Centre attracted gentle positive people. I met Ceilidh the life specialist from HSC 4 who had worked with Sasha and Mom during the day when I was at work.
I was asked by Dr Chris Newman to speak about how the Center had helped Sasha and when I did speak I ditched my notes and spoke from my heart as I had noticed noone else used notes. My written words are a bit melodramatic, but true nonetheless. It would be nice to be able to write like you speak.
The evening was designed to help us reconnect not only to our loved ones but also to the people who became like family during intensely emotional and intimate moments and who then disappear from our lives.
Packets of sunflower seeds were placed at the door for planting because of their big happy faces.
It was a memorial unlike any other I have witnessed.
Thank you.
This seems the perfect spot to show you the two trees planted in Sasha's memory on Paint Lake:
As caregivers and parents spoke, other parents and children and family members build a small but elaborate house made from sticks and boughs tied together with colourful ribbons and decorated with feathers and flowers. An oval cupped wooden frame with sheep wool was then inserted as the floor.
Into this house we placed small objects in memory of our loved ones. We put in a baby Raggedy that we bought from the 5 Fifty 5 shop at Sick Kids and one of Heather Rivlin's photos with Sasha holding her Raggedy on Mom's lap with the IV in the background.
Then the youngest and the oldest were invited to say a blessing and Henry carried Mia to stand around the house with other children and grandparents.
The tempo of the 2 hour memorial alternated between stories told from 4 microphones and the ever changing group of siblings and parents and grandparents constructing the house.
Stephen Jenkinson introduced the ceremony as a time to re-member which he said was not the opposite of forgetting but of dis-member: we were here to reconnect with people separated from us. Jennifer told us about where they found each of the items used in the house and reminded us that the trees were a short time ago living things, connected to trunks. A duo sang and played violin of a melancholy and undefined music from 'The East'. And a number of doctors shared their special memories.
I feel privelaged to know such a deeply compassionate and spiritual team of care givers and, as the team members expressed over and over, they feel privelaged to care for our dying loved ones and then supporting the families when they grieve.
One woman related how she and her partner were married at home just before Olivia's death and I could feel that same sacredness she mentioned in the care and attention put into getting Sasha home again.
A little girl named Sage who was almost two joined in several times through the evening with loud shrieks of excitement that sounded so like Sasha.
It was very special to see Russell and have him hold Mia and play with her. As we heard from other doctors and nurses and specialists, we could see that the Centre attracted gentle positive people. I met Ceilidh the life specialist from HSC 4 who had worked with Sasha and Mom during the day when I was at work.
I was asked by Dr Chris Newman to speak about how the Center had helped Sasha and when I did speak I ditched my notes and spoke from my heart as I had noticed noone else used notes. My written words are a bit melodramatic, but true nonetheless. It would be nice to be able to write like you speak.
The evening was designed to help us reconnect not only to our loved ones but also to the people who became like family during intensely emotional and intimate moments and who then disappear from our lives.
Packets of sunflower seeds were placed at the door for planting because of their big happy faces.
It was a memorial unlike any other I have witnessed.
Thank you.
This seems the perfect spot to show you the two trees planted in Sasha's memory on Paint Lake:
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