Thursday, November 8, 2018

I'm Sure

Dear Sammy,

I bet you wouldn't be into turtles any more.
I mean, I'm sure we'd still have your friend Speedy living in the house, but you'd have a new interest. 

I'm pretty confident that you would have a phone and be SUPER excited for today, the day that you would have been able to sign up for Instagram and Snapchat. 

I'm sure that you would NOT be thrilled to wake up and go to school today.
I'm sure that you would not be thrilled with early wake ups any day. After all, you'd be a teenager now.

I'm sure that you would be reading books and watching tv shows and movies that are "way above your paygrade" because I'm sure that you'd be taking recommendations from your big brother. And I'm sure that you'd be sharing them with Yael, so I'd have that to cope with as well. 

I'm sure that we'd be DEEP in the prep for your Bar Mitzvah today, so deep that I probably might say, "are you sure you want donuts?" and you would look at me and maybe you'd even joke: "mom, I had cancer. You can't go get me some simple donuts on my birthday?" And we'd laugh. Because I'm pretty sure that we would have so much to laugh about.

I'm sure that I would still be worrying about you a lot, but I'm here to tell you that is a parent's job. So I'm pretty sure that I would tell you how I plan to be annoying to you for a long time to come. Because that's what we say in our family. 

I'm sure of all of this.

But what I'm surest about is how much we miss you.

Today you are 13. And you are forever 8.
I'm sure that isn't right.


To make a donation to St Baldrick's in honor of Sammy's 13th Birthday, go here:

2nd birthday: Best Shot Monday
3rd birthday: Birthday marathon
4th birthday: This is your birthday song
5th birthday: Five is a big number
6th birthday: Six is Awesome
7th birthday: Lucky Number Seven and Birthday Boy
8th birthday: Little Things
9th birthday: Birthdate
10th birthday: Just Not Okay
12th birthday: Dozen Donuts

Thursday, October 25, 2018

Bar Mitzvah Preparations

When I wrote my last post, The Invitation That Wasn't Sent, several people told me that they thought it was going to be about Sam's Bar Mitzvah.

I gave it a lot of thought. Why did I focus on that invitation instead of the one that I was even MORE likely to have sent? The Marrow Day party was a little bit of a pipe dream (I mean, come on, Obama AND Rowling AND Miranda?! Pick one, Phyl.)...but the Bar Mitzvah...that was real.

And that's when I realized how very much harder this is.

The Bar Mitzvah was ALWAYS on our minds. We talked about it very early on (here and here). It's a milestone that is fixed, age-based. It's not like a graduation, which takes place alongside a whole group of others, or a wedding, which is individual and not related to a specific age. It's meant to happen at a certain time for a certain person.

And that certain person just isn't here.

And so it's been weighing on me, so so so much.

What would we be doing in these days leading up to the Bar Mitzvah? How many challot would I be baking? How many suit fittings would we need? What kind of tallit would he be wearing? Who from all of the various important parts of his life would have honors? (Would we be inviting SuperMensch?) Which parts would he be playing on the guitar? How would we fit everyone who wants to be there into the sanctuary? Would there be enough tissues in the world....

And yet, I'm doing none of that preparation.

So yesterday, I made him a Bar Mitzvah Montage. It was one of my favorite parts of preparing for David's Bar Mitzvah. I loved looking at all the photos, glorying in his growth and change, and choosing just the right blend of pictures, videos, and music to represent who he was, who he had become, and who we hoped he would be. Doing the same for Sam...felt like a good project.

It was harder than I thought, and I ended up using a compilation of pictures I had put together over the years, rather than looking at all of them. And of course, it has a different ending than David's.

Montage Sam Bar Mitzvah from Phyllis Sommer on Vimeo.

Along with that, I decided that we should go somewhere with the pain of this date. So I turned my thoughts to how we have always dealt with the big Sam-sized hole in our lives, and I've opened a St. Baldrick's Fundraiser in honor of what would have been Sam's Bar Mitzvah. I hope you'll consider the $18 gift that you might have given to him as a donation to St. Baldrick's, in hope that the next child gets to celebrate a Bar Mitzvah....or whatever fixed milestone they believe in.

Donate here:

Thank you.

Monday, August 27, 2018

The Invitation That Wasn't Sent

You are joyously invited to a 
massive celebration
Marrow Day "Birthday"

When: Today, August 27, 2018
Where: The United Center
Featured Guests: 
President Barack Obama, 
JK Rowling, 
Markus Persson*, 
Lin-Manuel Miranda**, and others

Most Honored Guest: 
Bone Marrow Donor Extraordinaire

This is the invitation that I wish I had sent out today. (We might have sent it out in advance, and we might have had to change venues several times because so many people wanted to come and celebrate with Sam and SuperMensch - so eventually we had to move to the United Center, since it got so big. And I'm sure we might have suggested that we could wait until the Bar Mitzvah in November to celebrate, but then we realized that we don't. wait. for. anything. anymore. So we went ahead with this big party.)

You know, we could have skipped the party. After all, it *might* have been an ordinary day, I suppose. Perhaps we wouldn't have even really noticed, except that we would be trying to decide which day of the week to head up to Wisconsin for a checkup. Perhaps it would be a longer checkup, and I'm sure we would stop over to the HOT unit with some gifts, to the Ronald McDonald House with some toys, and we'd have to get frozen yogurt in town too. Perhaps things would have been so "normal" and so "ordinary" that I would have had to remind everyone that this "other" birthday was coming up and perhaps Sam might have said something like, "I have to go to school because I don't want to miss my algebra class." And I might have reminded him that we can't go later in the week because he has Bar Mitzvah tutoring. And so we might have compromised on a different day, and it would have been a joyous homecoming to visit our friends at the hospital. And they would, as usual, marvel at how tall and sturdy he is and how far he's come from the little second grader who terrorized the nurses with water-filled syringes and played soccer in the elevator and added googly eyes everywhere in the hospital and was SO sick.

But none of that happened.

1, 717 days have gone by, and not one day goes by without a mention or thought of Sam in our household. We are all deeply, consciously, constantly aware of his missing piece.

I must be truthful when I tell you that the pain is mostly like a big shiny scar. It's a part of me, and I subconsciously rub my thumb over it...occasionally it will hurt, but mostly I'm just aware of its presence. 

We're not throwing a big party. I really would have loved to throw that party.

*I decided that Sam would have loved Minecraft as much as Solly does
**I'm sure Sam would share the family love for Hamilton, right?

If you're looking for a way to honor SuperMensch and remember Sam today, let me suggest a donation to St Baldricks. There are so many kids who still need us. 

welcoming the cells....

talking to his cells
From 2015: Caught Up
From 2014: Marking
From 2013: Will you Marrow Me?
From 2012: A Short Hospital Stay

Wednesday, November 8, 2017

Dozen Donuts

Dear Sammy,

Knowing that Solly doesn't have much of a sense of the calendar, I mentioned that it was your birthday soon. "Oh," he said, "he will be 12!"

I love that he thinks of you in the present tense.
I love that he didn't even have to think about how old you would be. (As a mom of four, I have to think of how old *I* am so this is doubly impressive to me.)

"And we'll have donuts for breakfast!" he said.

And we did.

Donuts this morning. A dozen, in fact.

Instead of a birthday candle, we lit a memorial candle.

Instead of balloons, we felt deflated. The mouthfuls of donut felt ashen and sad, hard and tasteless.

There's an ache today, a missing piece -- you're always on my mind. But today...even more.

Solly went on, by the way. "So next year will be Sam's Bar Mitzvah," he announced.

And I didn't have a good answer. Because he's right. It would have been one year til your Bar Mitzvah, one year from now. This year should have been filled with joy, a year of preparation and learning, a year of growing and thinking and working and loving.

Sometimes the weight of this hits me so hard. I have complicated feelings about the idea of the afterlife. Will we meet you again? Will we come together? Will our souls unite, our spirits join? Will we really see you again? I have no answers to these questions. I have no way of knowing if this message will reach you, because I really don't know if there is still a you...out there.

But we are here. And I want, so badly, to imagine that you're somehow with us.

But you're not. And this number is one more that you're not here. One more number past the 8 that you got. One more year without you. One more day in the 1,425 days that we've spent without you so far....and all the days that stretch before me.

Oh, Sammy. I wish that this letter was different. I wish I that I was writing a joyful piece in anticipation of your Bar Mitzvah year. I wish I had forgotten to write a blog post about 1500 days post-transplant (today would be 1534) and I was so happy that I had missed the milestone because, for a brief moment, things were so "normal" that I didn't even count the days. (As if I wouldn't count...have you met me?)

Today, you are 12. And forever 8. It will never be right.

I love you and miss you every day.


2nd birthday (That's a Blues Clues cupcake.)

2nd birthday: Best Shot Monday
3rd birthday: Birthday marathon
4th birthday: This is your birthday song
5th birthday: Five is a big number
6th birthday: Six is Awesome
7th birthday: Lucky Number Seven and Birthday Boy
8th birthday: Little Things
9th birthday: Birthdate

10th birthday: Just Not Okay

Tuesday, August 22, 2017

Only Two

It's the night-before-the-first-day-of-school.

It should have been the (first) year of three schools -- two at the elementary, one at the middle, and one at the high school.

One at the middle.

But it isn't.

We're only at two schools. The elementary and the high school.

It should be easier, right? Only two schools.
It should be easier with only two.
And yet it's not, of course. It's harder. So much harder.

I should be kissing four heads goodnight and setting up four lunches and planning four backpacks and taking four first day of school pictures and worrying over how to get to three schools...

But I'm not.

So instead I said Shema three times and tomorrow I'll kiss three heads and I'll know that it just isn't quite right.


The annual locker tradition...the shirt was unintentional
Fifth and First Grade

Kindergarten, First, and Fifth Grade

Friday, June 9, 2017

Here we are

When you a kid, you can't imagine that you have to do "real" stuff on important days like your birthday. You want to skip school, and you don't always understand that sometimes the rest of the world doesn't stop when you want to be having fun.

And then when you're a grownup, you have do things like go to work on your birthday and even sometimes things that you don't want to do. It's just how it goes, right?

Today is June 9, a day that I would like to spend under the covers in bed. It's the real beginning, the first time we heard the word "oncology" in relation to our child. It's the day that will, for our family, live in infamy.

And today the sun came up. The sky is blue.
It's the last day of school.
There are pancakes to make and phone calls to answer.

I'm not under the covers.

Today would have been Sam's Fifth Grade Graduation. The end of his elementary school years.
I can almost imagine the blog post I would have written about the poetry, the bookending, of this day falling on June 9th. I can almost imagine how tall and sturdy he would have been and how those hugs would have felt.

I'm not under the covers, even though I want to be.

So instead we are going to the graduation ceremony. To see Yael play the violin (it's not much to hear yet but it's cute to watch, let's be honest) and to celebrate with our friends. There will be an award in Sam's name.

The sun came up today.
The world continues to spin.
Here we are.

It will never feel quite right.

Which one would have been his chair?
His Kindergarten "graduation"
Where we've been in June...
2016: More
2015: June, Again
2014: The Bean Room
2013: One Year Later
2012: The Beginning

Monday, March 13, 2017


I haven't shaved my head in two years. I've forgotten how it feels...

I have an image of myself, a picture in my head.
And when I walk by a mirror, I'm a bit shocked. What's wrong with me? Who is that?

"Are you yourself again?"
I think that people look at me and they can forget. You can forget that I am not now and never will be the person that I was before Sam died.

For the most part, I am the person you know. The person who laughs and tells jokes and (even if my children disagree) is very, very funny. The person who bakes scads of hamantaschen and tells stories and plays Uno.

But it's always, always there. I am never ever going to be myself again.

I guess I'm a new me.

I realized that a lot has happened in two years. New people, new faces, new friends, new acquaintances. People who didn't really know the me that was me. The me that would never have dreamed of shaving her head. The me with four healthy kids, the me who didn't really know that it was so easy to go from me to not-me in just the blink of an eye.

Yael shaved too. And she's dealing with the in-between-ness of tween-ness. So she cried a little before school today, worried that someone would say something hurtful about her shorn head.

Before bed, we talked.
"How did it go?" I asked. "Not bad," she said. "We did talk about my hair a LOT."

"That's good," I told her. "It's one of the reasons we shave. Not just to raise money - even though that is important. But to get people to ask us about our funny hairdos. And we can tell them about raising money for St Baldrick's and about Sammy."

She wanted to shave. And she didn't want to shave. And now that she's done it, she's proud, she's good, she's really good. But she's sad. And so am I. Because right now neither one of us can hide behind the pretend-me-that-isn't-quite-me.

I'll never be (quite) myself again.

“The most painful state of being is remembering the future, 
particularly the one you'll never have.”

To donate to the St Baldrick's Foundation in honor of our shave, click here.

in 2015...Springtime
in 2014...Topsy-Turvy
in 2013...No worries here
in 2011...Snippets of Florida
in 2010...Purim is over
in 2009...Happy Hamantaschen
in 2008...Purim Fun

For one of us, this is a "before" picture
Oh yes, Solly decided to shave at the last minute too.
She's an old pro at this