Superman Sam

Saturday, November 8, 2025

Your Little Dot - a 20th Birthday Reflection

Sometimes when I want to feel rich, I open the Find My Friends app.

I feel incredibly rich when I see the little dots that light up and show me where all of my beloved family members are. I am so lucky to have so many little dots filling up the map.

This weekend, your 20th birthday, your siblings were flung across three different states. I zoomed out so I could see us all in one screen. Our family, all in those little dots.

Except you.

There's no dot that lights up for you.

I don't have location services enabled for your phone...you never did have one.

I wonder where you would have been on this birthday. Twenty is a big number...or is it?

I don't have location services turned on for you, but I know where you are every day - it sounds so silly, but I know you're deeply enmeshed in each one of us.

I just wish you were here to have a little dot too.

Happy 20th, Sammy. We miss you bunches.

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

16th birthday: Sweet 16
17th Birthday: This isn't 17
18th Birthday: Never An Adult
19th Birthday: Would you?

Friday, November 8, 2024

Would you....? 19th Birthday Reflection

Would you have voted in your first presidential election this week? (And perhaps, would you have thought of yourself and others with childhood cancer who have permanent pre-existing conditions as you voted?)

Would we have visited you for Parents' Weekend, and would you have showed us, with pride, your messy dorm room and your fraternity house?

Would you be in the midst of a gap year in Israel, and would we be getting regular "I'm okay" texts from you each time something happens there? Would you be sending me daily food pics?

Would I be sending you daily automated "boker tov" texts that probably come through at the wrong time?

Would you be choosing a major, and would it be based on your childhood experiences in the hospital, or might you be going in a totally different direction?

Would you be texting daily with Solly, trying to help him navigate 8th grade homework? Would you be monitoring his twitch stream and sharing his delight at his gaming successes?

Would you have been the one to help Yael prep for her camp staff interview, giving her the sage advice from your experiences only a year before? Would you be preparing for a year on staff together at camp?

Would you be cheering David on as he embarks on his acting career, and taking a road trip to Maine to see his show with your buddies?

Would you be making plans for your future, a future that never happened, because instead of turning 19 today, you are forever 8....

Sam, we miss you an unimaginable and uncountable amount every day. Some days....even more.

Happy 19th Birthday, Sammy. We don't even know all the ways that it's just not the same without you.

3,982 days later. We're still here.

16th birthday: Sweet 16
17th Birthday: This isn't 17
18th Birthday: Never An Adult

Wednesday, November 8, 2023

Never an adult...

There's something about turning 18, isn't there? A whole new list of adult things you get to do, places you can go, responsbilities you have. You can sign your own permission slips!

When a person turns 18, they think they're so old. And yet, the older I get, the more achingly young 18 seems to be.

And yet...it's the 10th time we're celebrating Sam's birthday without him.

Read that sentence again. The TENTH time. How can it be that we've done this ten times?

I read back over my old posts and I think about each year, how I wrote that we were just baffled by how the time had gone by. This feeling never goes away. How did we get here? How can ten years have gone by? How can we be counting in the double digits?

And yet we are. And he is not here.

I talk a lot about grief, and how it evolves. Like one of those trees that grows around something else, adapting to its environment - we've grown around the Sam-shaped hole in our lives. We've healed around it, stronger in some ways and weaker in others. We're never going to be an ordinary tree again. We're something new, something different. (Picture below for illustration because it made me think of Sam and our eye-bombing adventures.)

And it breaks my heart that Sam isn't here to evolve with us.

Happy 18th, Sammy. We miss you every day of every week of every month.

Solly is shaving this year, and maybe you'd like to make a donation? https://www.stbaldricks.org/events/Mitzvah2023

16th birthday: Sweet 16
17th Birthday: This isn't 17

Tuesday, December 13, 2022

Unbroken Streak

There's a whole culture now around creating a "streak." What's your Wordle streak? How many days in a row have you done the Mini Crossword? Did you close your watch rings all the days this month?

I have a love-hate relationship with these streaks. I really like adding up all those numbers, but I also sometimes defiantly break my streaks so I'm not beholden to them. This week, I broke my Wordle streak but I hit a couple of high personal-high streaks - the crossword puzzle, Duolingo...

Somehow, all of these coming together THIS week felt...like something. Because it made me think of the streak I've never wanted to count - 3,288 days since Sam died. NINE years. Nine YEARS. It's more years than we knew him. It's more years than he was alive.

And it's just not right. How did we get here?

Our lives have changed so drastically in the last nine years. The Sam-shaped hole in our lives has softened, become a little pliable. We think of him, we talk about him, but the edges have blurred with time. There's less pain, and more ache. There are some memories that are still sharp, in full focus, and there are others that are cushioned by forgetfulness. The photos tend to bring smiles rather than tears.

We have had no choice but to continue to put one foot in front of the other, to grow older each day, even though Sam did not. We have had no choice but to make new memories and new stories, even though Sam is not there to be in them. We have had no choice but to switch to the past tense, even though Sam is always so very present.

Nine years have gone by, with us missing him each moment.

Tuesday, November 8, 2022

This isn't 17

Dear Sammy,

Possibly, you’d want to be called Sam at this point. Let’s start over.

Dear Sam,

Nope. You're always going to be Sammy to me.

Dear Sammy,

Today you’d be 17. You’re not here, of course, but if you were….it would be a big party, I’m sure. Or maybe a small one? Just a few friends over for a special dinner.

You’d be deep in the throes of college prep, and filling out your application for Avodah. Would you be trying out for the musical? Or what about that French horn you might have asked for when you were 10, maybe you’d still be playing that. Or none of those. And you’d be doing something completely different.

There is a lunar eclipse this morning - for your birthday. It’s a fairly rare phenomenon, one that isn’t going to happen again for three years. I’m sure I would have made everyone learn about the lunar eclipse and eat something moon-themed. You probably would have rolled your eyes but also humored me. Because that’s what 17 year olds do.

But you’re not 17, are you?

You’re forever 8.

And we forever miss you.

Love,

Mom

16th birthday: Sweet 16

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.

Sunday, November 8, 2020

Frozen

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.

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 masks....it 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 lived....how 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 joyous....how 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.
Love,
Mom

To make a donation in honor of Sammy's birthday, go here: https://www.stbaldricks.org/participants/mypage/1040096/2020 (Yael will be shaving her head at her Bat Mitzvah, so we're getting a head (!) start.)

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.

Maybe.

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.

Love,

Mom

To make a donation to St Baldrick's in honor of Sammy's 13th Birthday, go here:
https://www.stbaldricks.org/fundraisers/sam13

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: https://www.stbaldricks.org/fundraisers/sam13

Thank you.

Monday, August 27, 2018

The Invitation That Wasn't Sent

You are joyously invited to a

massive celebration

for

Sam's

FIFTH

Marrow Day "Birthday"

When: Today, August 27, 2018

Where: The United Center

Featured Guests:

President Barack Obama,

JK Rowling,

Adele,

Markus Persson*,

Lin-Manuel Miranda**, and others

Most Honored Guest:

SuperMensch,

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.
None.

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.

Love,
Mommy

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

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.

Ever.

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

Not-Me

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.”

(Kierkegaard)

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

Monday, February 27, 2017

Moving

Do they know that each time I hug them, I'm really giving two hugs?

Do thy know that each time I give in to a request, I'm really thinking of Sam?

Do they know that when I decide what "matters," it's mostly based on one missing face?

Sometimes, I think that Solly is forgetting.

He was so little, so young. The new memories are crowding out the old ones. He's in kindergarten now, there's so much...new knowledge, new ideas, new experiences -- is this how we forget the younger years because our memories just fill up with so many new things that we just can't keep the tiny wispy baby memories ahead of them?

The other day, I started to realize that he might be forgetting. He barely talks about Sam any more, not the way he did right after he died.

And then just yesterday, he brought him up. Almost as though he realized it too, just as I did.
And then last night, when I was putting him to bed, he started to cry.

I miss Sammy. I want to see his face. When do we get to open the box in the cemetery? Do we ever get to open it up again? Do you think that there's a lot of plants growing there? Can we schedule a time to go there and see him? What does he look like now?

So we watched an old video of Sammy. We cried a little together.

Maybe you'll have a dream about him, I said.

Time keeps moving forward....without our Sam.

P.S. I'm shaving my head again: https://www.stbaldricks.org/participants/rabbiphyllis

Thursday, February 23, 2017

Alternate Reality

How's Sammy?

Oh....he's doing great.
He's eleven now, and he's in fifth grade. He's so tall! And so much hair...
You know....fifth graders....a lot of drama in that grade, huh?
He seems so good.
He just broke a thousand days post-transplant and things are going well.
Yeah, he gets tired easily and we're still really careful and nervous sometimes...
but he's off so many meds and it all just seems like it might be behind us.
It's never over, you know, but it's looking good.
He got into the school play. Both Sam and Yael are in the play - they're loving it...it's so fun to see them together...
He's playing the violin....
He's getting ready for middle school...
He's going to camp this summer...
You should hear the noise in my house when all four of them come home from school....It's beautiful.

It's an alternate reality that I sometimes run through in my head.
When I can't sleep. When it's quiet.
What would I be answering?

1,167 days have passed, and I feel as though time is slipping away, rushing away, flying away. We're moving further and further away from him. It is impossible to believe that he could just slide back into our lives if he just showed up. We are different now.

I've stopped believing that he's just going to show up one day, like in a movie about a missing child who is recovered twenty years after their abduction. Like we all just made a mistake one day and left him behind and then we found him again....I've stopped pretending he's just away for a while.

But I still sometimes can't sleep and I imagine what I would answer....how's Sammy?

I'm shaving my head again.
Because I feel just a little bit too normal.
A little bit too settled.
A little bit too far away from my missing boy.
My hair is long again, as long as it was when he died.
I find myself twisting a ponytail the same way I did for his funeral.
It's a little like re-opening a wound...but I'm not ready to just run my finger over an old shiny scar.
I'm shaving my head again because it just feels like time is slipping away.

I'm shaving my head to raise money to help other someday mamas to not feel this pain.
Help me out: https://www.stbaldricks.org/participants/rabbiphyllis

Wednesday, December 14, 2016

It's a Wednesday

It's a Wednesday.

Like any other Wednesday.

Solly finished the leftover pancakes for breakfast.
Yael and David finished the leftover french toast.
I had a bowl of yogurt with granola.

There was coffee.

It's a Wednesday, so we got up and got dressed.
The high school has late start, so Michael drove the kids together.
It's cold outside, so I reminded everyone to wear a hat.

It's a Wednesday, so Solly argued about wearing socks.

It's a Wednesday, so Yael left me her Hebrew binder to bring along for later.

It's a Wednesday, so I drove to my office.

It's a Wednesday, and that's just how it is.

It's a Wednesday, and you're not here.

Today is completely normal and completely abnormal, in much the way that every day since you died has been. Some days I am drawn into the darkness and other days I find the light. Some days, it's a lot of both.

It's a Wednesday, three years to the day since you died.

It's 1,096 days later and I miss you just as much.

Our beloved Dr. M is conducting his own campaign this week and it happens to be one that would be totally up Sammy's rock-loving alley. Yes, rocks. Check it out. My favorite part was the "press" conference. If you'd like a rock, click here. (If you'd rather give to St. Baldrick's, here's Yael's link.)

Rabbi Steven Lowenstein promised Sammy that we'd remember him with fireworks. This year, we watched them in a driving snowstorm and they were remarkably beautiful.

Some of Sammy's friends watching the fireworks, lit up by their brightness (photo credit: Rebecca Einstein Schorr)

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