"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.

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.

Living with Sasha's spirit

We have been struggling with the direction of this blog. How to maintain a focus on Sasha over time rather than, as it felt, ourselves and our anguish and fears and hopes? Sasha and us are inextricably bonded and we are the light to her memory and the tribute to her potential and the connector to all those she never met. But as the months pass, we struggle to feel the transcendent beauty of Sasha from the memory fragmentation caused by the experience. There have been fewer and fewer pink entries: Mom dreams of Sasha all the time, Dad doesn't but the blog is part of his awake dreaming. To remember in the sense of reattaching is to reconnect body and spirit. If death does not make us spiritual geniuses as Stephen Jenkinson reminds us, it does sensitize us to the spirit. After life, there is spirit. In life there is spirit. Sasha's spirit, I conclude, is all around. We simply have to feel it. To reconnect and remember in a positive way is to build new moments with Sasha in our lives as we help others. This is one positive sense of the notion 'move on' that we struggle with; so not move away from pain or grief or anger but live with her in new moments in a new world, where we re-member a dismembered daughter on a new path in a wider world where this peach now plays. The future of this blog is to travel in a new world of connections and networks and initiatives and kid's smiles where Sasha's spirit will be happy.

And Sasha's spirit is on the go, reaching out to be lifted, calling out in excitement and discomfort, walking hand over hand in an intricate coordination of little feet shuffling skinny legs supporting a swollen belly, long delicate fingers always exploring and touching and shining yellow eyes radiating, supervising, learning and loving, oblivious to her remarkable physiology, huffing and puffing without fear of the gods swirling around the hospital.