Thanks to the Max and Beatrice Woolf Center

EDWARDS GARDENS, November 7, 2006

This year we lost our first joy. Nothing prepared us for the sadness we felt, the decisions we faced and the questions we and our family and friends asked.

Nothing prepared us for the realization that our child was dying and that the dreams and memories would be frozen in time: no more peals of laughter, freezies, walks, kisses. No more milestone bravely crossed. Our hopes were replaced by grief, even as our child was with us.

What can I say to you who helped us grieve? Here are a few words to celebrate and remember your amazing support of our family.

After 5 months at sick kids, after a second surgery resulted in terrible complications, we contemplated a final proceedure that might have temporaily helped sasha or put her in a worse place.

And while we were still absorbing that there were no more medical miracles for us we walked across the street from sick kids to temmy latner.. I will never forget that first conversation with steve jenkinson.

While sasha knew our love we decided to end medical supports and let her tired sick body enjoy peace.

We had only one more wish, to bring her back to her home, where she was born, to her toys and games and dog and cat and walking paths that she knew. Her second birthday was coming up and Pamela was 8 months pregnant.

And our wish came true.

And during our first days we wished her last days to not be a vigil but a celebration. And steve and dr russell goldman visited us and we talked as a family and exhaled all of our 5 months of waiting in the hospital and we breathed together again.

And as friends and family visited and our only child sat in her high chair and went for walks, we wished we would have more time together. And sasha stopped bleeding.

So we awoke to hear birds chirping, and wished our precious child could have more time with us and less with nurses and doctors.

And the nurses of CCAC and dr goldman supported and trained us on iv proceedures and visited us when we needed help and gave us space to be alone together as a family. And whenever we had questions our care givers were just a phone call away.

And we wished her to enjoy each moment and sometimes she did, and sometimes she seemed sad and tired like at her second birthday party.

And when we worried we called Russell and he and the nurses visited and made Sasha comfortable.

And then her breathing slowed and quickened and it was the only day except for in critical care that we did not hear her sweet voice.

When we called Russell around 6.30pm on June 20th he said he thought he knew why. We dressed sasha in a pretty pink party dress. Russell removed her pick line and held a bandage to her wound until it stopped oozing and he kissed her forhead.

And as quietly as you enterred our lives, you were gone, helping other chidren.

Until we needed you in our grief and steve visited to talk with us about the past, the present and the future of our bereavement and connection to our sweet peach.

I cannot imagine not having those final memories of sasha at home. She was so happy to be home.

Thank you to everyone at the Temmy Latner centre and Max and Beatrice Woolf Centre. Thank you, thank you. We wished we met you sooner but we were scared to go home with IVs. You walked with us and removed our fear. You became a part of our family and we miss you. Your team empowered us and graced us with your knowledge, your experience and your kindness. Your nurses and doctors loved our little girl and have our love and deep respect in turn.

I was surprised to hear that your special services are largely funded privately and I ask that we all keep the centre in our thoughts.

To our precious children, we love you forever, for ever and ever. To all the care givers at Max and Beatrice Woolf, you are always in our thoughts, alongside our children. And to the Woolf family and the Dr. Jay Foundation, and all the other special donors, we thank you for your generosity and compassion in helping bring our children home to the place they love.

1 comment:

  1. Marcia12:29 AM

    Jon
    These words are absolutely beautiful and completely sincere. They are the furthest thing from melodrama which is usually 2-dimensional (good/bad, victim/victor) and evokes spectacular effects in order to escape from the cares of the world.
    Your gratitude, ethical dilemmas, hopes and wishes, show the depth and vastness of the love and concern, the tireless attention, and the countless hours of thought that went into doing the best you and Pam possibly could and the joy you both felt in making Sasha happy. She was the most joyful person I have ever met and the joy she exuded was a tribute to you both. The 5 weeks at home made possible by the expert help + sensitive distance kept by the caregivers allowed us all to contribute to Sasha's last weeks in her own familiar space. Henry was grateful to share the memorial event and was very moved by your speech + the ceremony. We hope that you will use your gift with words to render your experience + Sasha's courageous life in a more permanent format.

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