Saturday, June 14, 2014


I recently ordered from an online service called MySocialBook.
It's a hardcover, full-color book version of my Facebook activity.
From November 7, 2013 until December 31, 2013.

The last 37 days of Sam's life.
And the aftermath. (A total of 54 days.)

It's 167 pages.

All the posts from November 13, after we found about the relapse. This is one of many pages from this day.
Posts and pics from December 8, the day we came back from the Make-A-Wish Trip to Orlando.
There was a lot of Facebook activity in those 54 days.
I couldn't keep up, and I wanted a less-ephemeral record of the messages and posts and pictures and "status updates." Now I have all of your words, and I can read and re-read, I can share as the kids get older and Facebook becomes passé.

I remember back at the beginning of this whole thing, when Sam would talk about the people who "live in your phone, Mom." How could he even fathom the networks of people that Michael and I know, from so many parts of our lives, and the way that they all intersected in the interwebs to bring us comfort and connection? How could a little boy who couldn't, at the time, even read a book, understand how we could read email after email and derive comfort from distant and sometimes-never-met-in-person friends?

I remember trying so hard to explain it to him.
I remember how you all helped so much, filling his room with cards and letters and photographs of yourselves dressed in superhero costumes. Did I ever thank you enough? Thank you.

Sam's first room -- E571

I know how much that meant to him and to all of us.

I'm the keeper of our family history. I'm the teller of our family's stories.
Sometimes I wish I wasn't so keenly and painfully aware of "last year on this date" or "two years ago on this date." Sometimes I wonder, if I hadn't kept such careful records, such detailed logs of our daily existence...would each day feel less weight, less pain? Would it hurt any less?

I'm guessing the answer is no.


  1. It would hurt just as much and as time passes and your emotions are not so brutally painful, you might even find that your careful record-keeping will bring you peace. You'll be able to look back and see how far you've come all the while never forgetting how hard, how acute, how intense the pain WAS. I imagine that the pain will become less intense some day but the ebbing of your emotions will NEVER diminish the intensity of your love for Sam. I draw strength from your strength every day, Phyl--you and yours are ALWAYS on my mind and I am constantly sending my love to you!

  2. I know you only because of my cousin, Jennifer Friedman. She brought me into your lives through her posts. I can only thank you. You have shown compassion, caring, strength, love, family, faith, and shared them with all of us. You have helped to make us all better because of your ability to share this human-ness. I only hope that those of us who have learned and grown so much because of you can give some small amount of comfort back, knowing that Sam will live on and touch lives in ways that you can never imagine. I wish you and your family all of the best, and peace.

  3. I'm guessing you're right. I know for me, when I look back and *can't* find something, that kills me.


  4. I think its a bracha that you can have these pics, thoughts, updates, now in a book. sammy deserved to have this book, about what your family went thru but also the warmth and love that you all showered on him. yes, you will show friends and family, but it will be for your grandchildren, g-d willing, they will know who sammy is.

  5. This must be a treasure book, so full of memories and the people who made them. I certainly treasure all the "pages" you have shared with us on this blog, to make Sammy a true companion in my life.

  6. I'm an inveterate chronicler too.

    I suspect that if you had not kept such notes and remembrances, the pain wouldn't be any less.

    And I think your remembrances will be a gift for your other kids as they grow -- maybe especially for Solly, but for David and Yael too.