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.
Showing posts with label male grief. Show all posts
Showing posts with label male grief. Show all posts
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."
Fathers Day, everyday
I got my best card ever yesterday, a pink baby elephant sitting on a bigger purple elephant from Sasha. I never knew that a little card could make me so happy. Sasha loved the picture as well, I guess she forgot what she chose. Being a father has been a new life, the only thing I can compare it to is leaving South Africa and arriving in the whole new world of Canada. As someone famously said, The days are long but the years are short. I cant believe it has only been two years!
Last night Sarah and Betsy visited and Sasha was animated when Betsy turned on the talking Teddy (The wheels on the bus go round and round, Hullo, do you want to play today?) and Sarah discovered her little popup toy, figuring out immediately to push the popups back in. Then it was off to Granny and Gramps to see everyone except Sean and Mark (felled by too much South African Freedom Day sun and sausages). In the car I turned up the tributes to that famous 64 year old and Sash clapped away - but it was not to last, she was so cranky we had to leave after just an hour. Pretty much straight to bed for a quick nap and then the usual game of sit up, bug eyes, pointing NyaNya to the door, napping and getting us running up the stairs at her call. Ah Sash, you have my sleep habits on top of your Alagille itch. We kept monitoring her bag as nothing was coming out, the sign of a big clot getting stuck inside. The big ones can literally push off the ostomy bag.
I cannot lie with her for longer than a few minutes without getting teary, her beautiful golden legs and shoulders are skinny, just a trace of gold fuzz on her arms, as she keeps picking at the gauze covering her PICC and around her belly. She is in #5 diapers because of the size of her tummy but her thighs are smaller so she keeps leaking, Mom says I have had some horrible regression in my kid care skills but same happens to her diaper folds. So we go through all our fitted sheets everyday. Thank goodness for the plastic cover we put over the mattress, not sure why it took us two years to buy one!
Now she sleeps, Mom sleeps down stairs and all is quiet to the drip of the rain outside for the thirsty flowers. That means the red roses on the street will be full and one will be ready for Sasha's headband.
I just remembered, two days ago, I awoke in the morning as her calls seemed just a whee bit more insistent and I found her hanging off the bed, tummy on the edge, feet flailing, fingers gripping the sheet, about to fall down onto the floor. Sash has no interest in standing or walking. She can bear her pink stuffed mini throne chair but the only places she really likes is in our arms and on the bed. And on the bed what I have loved to see over the last few weeks is that she first relearned to roll from side to side and now is pulling her leg over so that she is almost on her belly, her favorite position before the surgery. I got such a kick out of waking up and seeing her sleeping on her tummy with her bum stuck in the air and her legs tightly curled beneath, her arms tight to her sides and her face plastered sideways into the mattress.
Thanks to everyone writing in, it means a great deal as each story is different and it is so important to remember that Alagille ranges very widely in severity and that so many moms and dads have lots to look forward to.
* The beautiful fingers of an Alagille baby....Sasha you are just like my Jordan in so many ways. We love reading about your days and your walks... all our love,
Leisa & Jordan (AGS) - Australia
* My Heart is with you today and I am not real sure ow you get through, but I give you all my strength anf prayers - you are such a great Father and role model for parents of Children with Alagille. Reading Sasha's blog made my heart jump out of my chest - she is so beautiful, she is a true angel.... I am praying that she is content and doing okay along with the rest of your family. I hope that you know how great of a Father you are, you make our family stronger - You are special to us...We hold a little place in our hearts for Sasha and she is included in all my prayers. Love Kristy And family (JIRI AGS)
Thanks, we get strength from our little fighters, our incredible spouses and our supportive family. Pam is amazing, she is now in the waddle stage but still hitting the stairs to deal with the meds I didnt pick up - it has been an evolving feature of our relationship that when one of us is dispirited the other is ready with some sick humour or stay the course support. I am more mobile and able to hold Sash. Pamela is fastidious in keeping Sasha in clean sheets and clothes. We are more of a team than ever before - thanks Sash!
Subscribe to:
Posts (Atom)