Showing posts with label grief. Show all posts
Showing posts with label grief. Show all posts

Father's palliative parenting grief research poster

The poster for "Fathers' Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care" has been accepted at the Hospice Palliative Care Ontario 2012 conference.

Thanks to the skills and big hearts of Sickkids' Laura Beaune, Dr Maru Barrera, David Brownstone and Stanley Ing and Stollery's David Nicholas, Dr Mark Beletrutti and Mathew Milen for embracing the challenge of including a parent from SickKids Family Centered Care Advisory Council in the research.

Learning how a parent can participate in family centered care research has been an experience we also hope to document. This poster presents preliminary findings and emphasized a desire for peer support.



Death's opposite

I had carried Mia from the bath to our bed and she was scrambling over the duvet and pillows, propelling herself up the piles of pillows and reaching up the headboard when Mom came up: "I was watching videos of Sasha in the last weeks and she looked so sad. She looked confused; she was not happy." Through my tears, Sasha's little sister purposefully and happily stroked Cat and purred herself.

25 years today, a small plane crashed in the Andes. After two months, two of the survivors set out on a final effort to get help. Walking in jeans and sneakers, one of the party recalled the moment he crested a 17,000 foot peak, expecting to see lush green valleys and instead saw ice and snow as far as the horizon:
"I don't know how long I stood there, staring. A minute. Maybe two. I stood motionless until I felt a burning pressure in my lungs, and realized I had forgotten to breathe. I cursed God and raged at the mountains. The truth was before me: For all my striving, all my hopes, all my whispered promises to myself and my father, it would end like this. We would all die in these mountains. We would sink beneath the snow, and ancient silence would fall over us, and our loved ones would never know how hard we had struggled to return to them. In that moment, all my dreams, assumptions and expectations of life evaporated into the thin Andean air. My love for my father swelled in my heart and I realized that, despite the hopelessness of my situation, the memory of him filled me with joy. It staggered me. The mountains, for all their power, were not stronger than my attachment to my father. They could not crush my ability to love. I felt a moment of calmness and clarity, and in that clarity of mind I discovered a simple, astounding secret: Death has an opposite, but the opposite is not mere living. It is not courage or faith or human will. The opposite of death is love. How had I missed that? How does anyone miss that? Only love can turn mere life into a miracle and draw precious meaning from suffering and fear. For a brief, magical moment, all my fears lifted and I knew that I would not let death control me. I would walk through the godforsaken country that separated me from my home with love and hope in my heart. I would walk until I had walked all the life out of me, and when I fell, I would die that much closer to my father."

"Thoughts About the True Miracle in the Andes", Cynthia Boaz, t r u t h o u t, quoting Nando Parrado from "Miracle in the Andes", 2006

I let Parrado's words hang around a bit. The opposite of death is not life, it is love. I have struggled over the last year to understand how we came to the point where Sasha was living and dying, where the two were no longer opposites. We have struggled with our own dim awareness that Sasha was dying, telling CCU that we needed to know that. As if we didn't know it in our heart. There is another old saying: love is blind. Love first lead us to push aside this awareness Sasha was dying, then love lead us to bring Sasha home to die. And now, all we have left of those two tumulteous years is love. Love for Sasha, love for those who cared for Sasha and love for those who travel Sasha's path.

Permission to be happy

The other night we were remembering our sweet peach and talking of the one arriving soon and it felt like a painful dejavu. Sasha was dying at 2 as Mia approached; Mia is an exuberant 14 month as her sister (we think) arrives. Mia's pregnancy during our time at SickKids is lost in the mist while this little one proclaims her presence early with lots of turns and heart burn.

On this 14 month anniversary of Sasha's death we are grateful for the opportunity extended by Margaret Keatings and Bonnie Fleming-Carroll for Sasha's fund to participate in SicKids Hospital's first Interprofessional Care week later in November. The plan is to collect stories on multi-disciplinary, interprofessional and family centred care. More details to follow.

Sweet Peach, even as we remember you with tears and smiles, Mia gives us permission to be happy (as Kari Murphy put it so well). We think of you every day, here is a little song for you we have been playing recently. "Well the first days are the hardest days, dont you worry any more, cause when life looks like easy street, there is danger at your door. Think this through with me, let me know your mind, Wo, oh, what I want to know, is are you kind? ... You know all the rules by now and the fire from the ice. Will you come with me? Wont you come with me? Wo, oh, what I want to know, will you come with me? It's the same story the crow told me; its the only one he knows. Like the morning sun you come and like the wind you go. Aint no time to hate, barely time to wait, Wo, oh, what I want to know, where does the time go? Come hear uncle johns band playing to the tide, Come with me, or go alone, he's come to take his children home." "Uncle John's Band", Grateful Dead

Sasha's more familiar absence

Sasha's absence has become a part of our ever unfolding present, no longer unfamiliar. Time dulls grief's raw edge of regret. Daily re-membering of cherished moments lets past pain have its place as her soul's journey inspires awareness and generosity toward other families experiencing end of life and the wonderful care givers who help them. I love you Sasha and am thankful for the short time we had together.I imagine your smile as we get ready for your sister's first birthday party tomorrow. I so wish you were here and you are here in all our hearts.

Sasha's unveiling


The family gathered to celebrate Sasha with Rabbi Arthur Bielfeld generously continuing his support to our family after 27 years. Granny, Dad and Mom spoke briefly after the cotton was pulled away from the pink granite so we could see Sasha's tombstone on her grave for the first time. It was a small and intimate knot of people around the grave and we were so happy to be joined by the warmth and presence of Rabbi Deborah Landsberg, Temple Emanu-El's current rabbi.

The service began with a beautiful guitar and vocal rendering of I Can Change The World With My Own Two Hands by Treasa Levasseur and Brendan Wall. I'd wanted to dance with Sasha to their music and was deeply moved that they would come to play at Sasha's grave in exchange for a donation to SickKids hospital. How amazing is that? Treasa and Brendan play a range of instruments for different bands and events all throughout Toronto. I typically see them together with Bill Stahl in Little Jimmy's Chicken Pickers. Treasa also plays with Coren Raymond in the outstanding Sundowners who offer soulful original and cover versions of folk with a country twang at The Cameron House every Thursday.


These pictures were taken on a later visit, we will upload the video of the service and Treasa and Brendan's beautiful singing and playing soon.

With My Own Two Hands:

I can change the world
With my own two hands
Make a better place
With my own two hands
Make a kinder place
With my own two hands
With my own
With my own two hands
I can make peace on earth
With my own two hands
I can clean up the earth
With my own two hands
I can reach out to you
With my own two hands
With my own
With my own two hands

Im gonna make it a brighter place
Im gonna make it a safer place
Im gonna help the human race
With my own
With my own two hands

I can hold you
With my own two hands
I can comfort you
With my own two hands
But you got to use
Use your own two hands
Use your own
Use your own two hands

With our own
With our own two hands
With my own
With my own two hands

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.