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.)

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

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

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

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

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

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