Monday, November 8, 2021

Sweet 16

It's been 2,886 days since Sam died.

He was alive for 2,958 days.

Those two numbers are remarkably similar. We had him physically with us just about as long as we haven't had him. 

Today is his 16th birthday. 

Several of our family members are currently binge-watching The Vampire Diaries (judge away, friends). Vampires are so interesting - they can live for hundreds of years. Of course, the show doesn't spend too much time on the existential questions about what it means to live forever...and yet, some episodes do address that deep question. What does it mean to fall in love and know that you either have to bring that person into immortality with you, or watch them grow old and die? And then there's the coming-back-from-the-dead, which people do with remarkably frequency on the show. A whole story line was devoted to the number of people in a mysterious "other side" that wasn't quite death, and then they all came back. (Even the bad guys.) On the Vampire Diaries, dead is not dead. It feels...temporary. And so each time someone dies, the characters talk about "bringing them back" - and they really mean it. But coming back from the dead is never without consequences. Something is always taken or given in return. Something is always not quite right. Death is still a supreme and terrible force, even in a story where it can be magically defeated.

So many questions swirl in my mind, especially in the evenings when we're hopped up on a few episodes.

What would I have given to bring him back, even for a moment?
What would I do if life-eternal had been granted?
What would he be like if magic had healed him, brought him back, given us the happy ending we wanted?

And yet...he's not here. And we're not the same. And this is real.

For several years, we tried to do "what Sammy would have wanted" for his birthday. We watched his favorite movie and we ate his favorite foods.

But last year, and this year, we have tried to think about which of the current favorites that WE have as a family - which of THOSE experiences that we're currently living - which ones would speak to him. It's really hard to guess. To imagine. To magically place him into our world for a moment, even just a silly moment like "what should we have for dinner?"

2,886 days is a long time to be apart. He's unchanged. Frozen in time, as I said last year. We are not immortal, but we continue to grow and change and make new stories without him. And we miss him. All the time.

To make a donation in honor of Sammy's birthday, click here or 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
13th birthday: I'm Sure
14th birthday: Because You Haven't Grown Up
15th birthday: Frozen

Sunday, November 8, 2020


Today is Sam's birthday, and we've talked a lot about what he would have liked.

Would he still like McDonald's?
Would he still think dragons are cool?
What would a high school Sam sound like, act like, think like?
What would he think about politics, about food, about Minecraft?
What would he think about music, about math, about books?
What would he think about God?

We have no idea. None. 

He is totally frozen in time, as we move forward through it.
Sometimes I make things up. I look at 15-year-olds and I close my eyes and I try to picture Sam in those situations, those stories, those ideas. But it's just make-believe.

I scroll through the old blog posts...and I realize that I keep wondering. I never stop wondering. 
Will I ever stop wondering? 

What would you be like? 
I wish we had been able to find out.

To make a donation in honor of Sammy's birthday, click here or 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
13th birthday: I'm Sure
14th birthday: Because You Haven't Grown Up

Monday, August 17, 2020

It's the 18th, of course

These last few months have been strange.

For everyone. For the entire world. Everyone staying home, completely scared of a virus, washing their hands, wearing has also felt like deja vu. When Sam was in the hospital, each day felt something like this. A bubble, our own little world, trying to make normalcy amidst something totally out of whack. Our family talked about Sam a lot in the first few weeks of this strange quarantine, more than we usually do, remembering stories of how we kept ourselves entertained and how it felt to learn all the procedures to keep Sam safe. 

I've always thought about the dates that are imprinted on my memory, my heart, my soul. I kept such careful track of everything, we documented each day, I always wondered if the dates would cease to hold power over me. Would I always feel a sense of dread around June 12? Would August 26 be an anniversary that we'd continue to remember? So far, those dates are a little less dreadful, but still pretty solidly a part of me.

And then came the plan to move into college. Yes, it's time for David to launch out of our nest and into the big wide world. He had a couple of options for move-in day, and he chose August 18. "Eighteen, mom! It's such a good number." Yes, David, it is. It is a good number.

And my heart was so full, because the calendar in my brain gave a little ding, a little reminder bell. August 18, 2013 was the date that Sam moved back into the hospital to begin the bone marrow transplant process. But I didn't remind David about the other August 18 move-in day. It was too much to ask of him, to tell him, to hold onto. It's too much remembering, even in these days that we remember so very much. It was too much sadness to put onto a joyous experience (even amidst a global pandemic - that's probably a whole other blog post!). The undercurrent is always there, but I don't need to bring it to the top. 

This is different. It's completely different. We were vaulting into the unknown then, for sure, with uncertain results. We are vaulting into an unknown, yes, but it's not nearly as unknown. Along with thousands who have come before and thousands who are in it with him, we launch....

It's not the same. And I'm so glad.

But it's nice to know that Sam is with us every day, every moment, in our hearts.

First day - fifth and first grade

David was always Sam's favorite visitor

Moving in on August 18

Thursday, November 7, 2019

Because You Haven't Grown Up

Dear Sammy,

Did you know that every time Solly walks by your name on the memorial board at the synagogue, he adds a stone? Every so often, I have to go over and un-pile his stones so that other people can use them too. And then he just piles them up again. It's almost like a game we play. Except we don't really talk about it. I just know that he does it. Maybe now he knows that I do it too.

Your name is often on our lips. You'd think that after all this time, we might not talk about you regularly. But that's not true. We bring you up a lot. Sometimes it makes us cry. And sometimes it makes us laugh. Even though it's 2,155 days since we last saw you....

Solly feels like we're withholding information from him. "Just start at the beginning and tell me everything," he said tonight. But I don't even know how to start to tell him about you, to breathe life into the stories that we all do I explain to him that there are just so many moments that I can't explain - the same moments that every parent holds onto - the moments when it was just quiet, and we sat together, the moments when we laughed, the silly and the sad, the hard and the do I explain each moment that made up your short 8 years? I just can't. But I try. We try each day to share a Sammy story with him...because he wants to know you. He will turn 9 this year. And you will be forever his big brother who is now younger than he is. It's hard to wrap his brain around. It's hard to wrap mine around too. Where there once were four, there are now three. It's math, but it hurts my heart.

We'd be registering you for high school. You'd have tagged along on college visits. You'd be planning your 8th grade trip to Israel (and I'd be worrying about sending you off, and checking to see if the doctors had any concerns, and everyone would just be telling me to stop hovering....and I would remind them that I have earned the right to hover over you).

We went out for dinner to your favorite Indian restaurant, like we do every year. I said, "maybe if Sammy was here, he'd want something else for his birthday." But since you haven't grown up, we can't know. So we went for Indian food. Because you haven't grown up.

You haven't grown up. But we're still here.
We miss you every minute of every day.

To make a donation in honor of Sammy's birthday, go here: (Yael will be shaving her head at her Bat Mitzvah, so we're getting a head (!) start.)

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
13th birthday: I'm Sure

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