Wednesday, April 16, 2014


So now it's been two weeks since I shaved my head.
And I still do a double-take whenever I look in the mirror. Who is that person? The image in the mirror doesn't exactly match the image I think of when I imagine myself...who am I?

I think about what Sam must have thought about all the changes in his life. Sometimes he shared his feelings with us -- he was indignant that he had to spend the summers in the hospital, for example. He hated that he couldn't go swimming. Sometimes he was happy -- there were many things that brought him joy and laughter. But he was only 6...7...8 years old. It was hard to get a real sense of his feelings and ideas; he had limited vocabulary and experiences with which to share what he knew. I was waiting, I was imagining....I was always thinking about how we would talk about this time in his life, how it would impact him as a teenager, a young adult, a parent...I envisioned the conversations we would have at those stages in his life, and how he would want to frame his experiences as a child with cancer...I often would think about what it was going to be like to interpret his Bar Mitzvah Torah portion with him. Would it relate to his survivorship? Or would he, at that time, brush me off and tell me that it's not the most important thing in his life and he has much more important interests now? What would his college entrance essays say? Would he talk about the defining experience of a bone marrow transplant and his desire to cure cancer, or would he have new experiences that would make a more compelling essay? And what would he have told his life-partner, in those early conversations in the newness of love, about his childhood and the time he spent in treatment for leukemia? I was always thinking about how he would look back at this part of his life...hopeful that when he looked into the mirror, he would be proud of who he had become and what ordeals he had survived.

When we were making decisions that had impact on the whole family, such as the plan to enroll the kids in school in Milwaukee, I would use the image of a future Passover Seder in my mind. Not the meal or the Haggadah, the words we would say describing freedom, mind you. No, I had the image of our family-in-the-future sitting around, after the meal, drinking our coffee and nibbling on Pesadik brownies, my four children and God-willing, their partners, talking as their children (my grandchildren!) played together in the other room. And I would envision one of them saying, "remember those years of our lives when you had cancer, Sam?" And they would laugh and joke and tell stories and maybe Michael and I would exchange knowing glances, content in our lot that our children could recall these days with love and blessing, that only we, the parents, could truly recall the terror and pain that we felt as we shepherded our flock through those raging waters...that their memories were glazed over with the softness of memory and sweetened by each others' presence...and in my imagining, I would sigh with the peace of knowing we had been faced with so many terrible choices and we had come through to the other side into the promised land....

But that's all in the mirror-land now, isn't it? That alternate place that I imagined, the's like that life is still going on, somewhere, in some other-world...but we're not living it.

And here we are, left to sit at the Passover Seder without him, always knowing that there will be an empty chair at our table....oh, God-willing we will be having many conversations around the table with David and Yael and Solomon and their future partners, our grandchildren playing in the background....but we will always feel the presence of the forever-eight-year-old Sam, never knowing what he would have thought of whatever new and crazy things we're discussing. He's frozen for always in that one moment in time while the rest of us, despite my deepest heartfelt wishes, continue to make new memories and create new experiences....without him.

So I look in the mirror....and I wonder who is looking back at me....
November, 2006
May, 2011
January, 2010
SederSelfie - this year...
One year ago of my favorite posts and videos....


  1. thinking of you. with warmth and feelings.

    1. The holidays are brutal aren't they. They magnify your sense of loss.
      I think of you all the time.
      I hope the good parts of pesach are enjoyed for you with all of your family and friends.
      Love, Grandma Joan

  2. A mundane question: what was the link between Sam and the University of Minnesota (noticed the sweatshirt he was wearing). Thank yu once again for allowing me to be a receiver of these stories, your strength and a sense of this magical young person

  3. I would think that's one of the hardest parts in all of this. Despite your best efforts, life keeps on going on. Your kids keep growing up. It's just heartbreaking, and yet you'd wish nothing less for them than to keep growing up and making memories.

  4. oh, beautiful mirror-land. if only it were within our reach.


  5. Thanks for holding up the mirror for all of us to see such wonders, a boy at Seder, forever passing over, drawing us on see him again and again, lost and found.

  6. Thank you for your continual postings. Hugs and prayers from CA.

  7. Oh Phyllis, how you manage to write so beautifully about such pain is beyond me , but thank you -- again and again-- for sharing that innermost part of your heart with us. Love...