BMT +11 months

Eleven months ago today, Sam received his stem cells. 

11 months. 

Almost a year. 

What kind of party would we be having today? A barbecue? A firefly hunting party? A day at the pool?

What kind of bash would we be planning for next month? A back-to-school carnival of massive proportions....one year post-transplant and the start of third grade. 

Instead....I'm planning a stone dedication, an unveiling. 

Missing him today and every day. 

Names and Labels

When we were naming our children, there were a few considerations. One, of course, was to name them after relatives who had died. This is a prevalent custom amongst Ashekazi Jews, which we are. So that was easy. I wanted them to have names that moved easily between Hebrew and English, and it was a bonus if the names were biblical.

It was pretty easy to name Sam. We loved the name Samuel Asher. When he was born, it fit him like a little name-glove.

We never really thought about how prevalent the name Sam was, both for boys and girls. Okay, so it was the 47th (and 91st - Sam got its own category, Samuel was 47th) most popular name for boys in 2005. And in that same year, Samantha was the 20th most popular name for girls. So that's a lot of Sams and Sammys running around, if you ask me.

(According to the Social Security Administration, Samuel has been in the top 100 for the last 100 years. So um, there's that.)

You know, it didn't really matter. Sure, there were others named Sam. Big deal.

And now? Sometimes it matters a lot. I hear someone calling "Sam!" out on the playground and I whip around, my heart in my throat. And sometimes I meet someone named Sam or Sammy and I smile, so glad to speak that name.

Maybe you've noticed recently the Coke and Diet Coke bottles and cans that say "share a coke with..." And then there's a name. They seem to be random, each store has a stock of different names. 

 
It seems so silly and yet....I wanted to buy up every Sam bottle in the store (I didn't, just this one). And I wanted to imagine others buying them and sharing a coke with Sam. Sometimes I don't have to imagine - people have shared their pictures with me, when they've found the Sam cans or bottles. Does Sammy diet coke taste different? Maybe....

(Sam, who really didn't like Coke. I guess that's not the point...)

We mention his name so casually in our house. The other day, Yael and Solly were playing a "game" in which she was the "mommy" and he was "Sammy." It made my heart hurt to hear her call him Sammy. 

And it also made my heart feel a little better. I can't imagine never hearing anyone say his name. Sometimes I whisper it in the dark before bed. Just to make sure it's been said enough times that day. 

Sam. 

Feather on the ground at Bay Beach in Green Bay yesterday

2009 at Bay Beach in Green Bay

Ephemeral Moments

It's so fleeting.
The tone in Solly's voice that makes me think of Sam.
The words he uses that are Sammy's words.
The giggle or the jump or the turn of phrase...Sam.

He's a constant part of our conversation, but briefly, without dwelling on it.
Sam liked that, we might say.
Sam would have picked that one.
Yes, that was Sammy's shirt or stuffed animal.

Someone told me that I should be telling stories about Sam.
But I am not sure how to translate some of these ephemeral* moments into stories.
The way that Sam was silly.
The way that he would make up stories or play games.
The way that he was impatient when things didn't work fast enough or I focused on someone else when I should be reading to him.
The way that he would sing along with the music of DragonVale.

And the ways that Solly and Yael mirror him.

Solly lined up a whole bunch of random toys yesterday, spending quite a lot of time getting their placement just right so that he could play with them in a grand convention of mixed up toyness (dinosaurs and robots and the like). It held so much of Sam-ness that I had to catch my breath.

I was talking to someone this week who didn't know me. As we were talking, I counted heads of my children, who were off doing their own thing. She said something like, "just the 3, right? or is there a 4th somewhere around here that I don't know about?" Harmless remark, made without any intention to wound.

There's a fourth around here somewhere.
You just can't see him...but we can feel his presence everywhere.

Where we were a year ago: getting chemo & doing yoga, and we had just moved into the Ronald McDonald House.

Where we were two years ago: heading up to camp for Shabbat

June, 2011 - one year before diagnosis

August, 2010

also August, 2010. Check out that classic Sammy face.

July, 2010 at camp

*So I looked up this word, as I often do, since I'm quite worried about using big words that I think I know and finding out that I'm using them quite incorrectly. I'm happy to tell you that I'm using it correctly. But what I really want to tell you is how many times insects appeared as an example to explain what ephemeral means, as in, "short-lived, like some insects." I think Sam would have approved.

Reminders

I love it when people send me texts or emails or Facebook posts with things that remind them of Sammy.

It fills me up to know that there are so many things out there that remind them of his missing presence. It makes me feel so much less alone.

Because, in all honesty, here is a short list of things that remind ME of Sam:

Walking.
Sitting.
Standing.
Waking up.
Going to sleep.
Breathing.
Being....

Catching fireflies, summer 2011....every firefly I see....

Where we were...
2 years ago
1 year ago (today I got an automated email from the yoga studio at which Sam attended camp, reminding him (yes, it was addressed to him) that it was his one-year anniversary with the studio...)

Solly found this feather....

I didn't even have the words to compare the 4th of July fireworks to last December's...I know that so many of you were thinking of him then too.

Day 201

Today is 201 days since Sam died.

Yesterday, day 200, was also a day of public and communal mourning in the Jewish world.

I couldn't watch, I could barely read the articles. I could hardly think about the not-knowing, the sick feeling, the open-wounded-hole in those families about which I know far too much. I desperately wish I could write: "I can't imagine what it is like to have your child die." But I do far more than just imagine...

It's different, of course. Every story is different. Every parent, every child, every community...

And yet it is just the same. No matter how private or public. At the end of the day, it is the same.

One of the mothers, Rachel Frenkel, bravely reminded people, "God does not work for us."

Oh, how I wish that she was wrong. Oh, how I wish that God just did what we asked. Those three boys would be home safely.

And I would be pushing Sam on the swings...

More scenes from Summer 2011:

Where we were:
Two years ago.
One year ago.

And today....

Yael's artwork

Alternative

I should have been driving up to camp early this morning to retrieve him.

I should have been excitedly anticipating hearing all the stories about his first time as a "real" camper.

I should have been worrying about whether or not the laundromat would be overly busy, and where should we take his laundry so that we could wash it all before the next session starts?

I should have been setting up our room for three kids, his last time as a "day camper" as he transitioned from the first session (he would have been old enough) into the second session (not quite old enough to sleep in, but old enough to "day camp," a perk extended to faculty kids).

I should have been wondering how I would have enough space in the drawers for all three of their clothes, and I should have been listening to him telling Solly and Yael all about what it was like to sleep in the cabins.

I should have been teasing him about how tired he was, and how few letters I got, and how dirty his feet were. I should have been impressed at how dirty his laundry was.

I should have been asking about his color war team, about Shabbat walks, about his favorite lunch and what he had for dinner last night.

I should have been asking him if he planned to come back next summer and I should have heard the answer "yes, for the whole summer, mom."

I should have been drinking in his little face, away from me for two whole weeks, and marveling at how grown up he seemed, how much taller he must have grown, how much he needed a haircut.

I cried as I drove up to camp today.

Because I know exactly how it should have been.

Summer 2011, Sammy's last summer at camp

Summer 2011, ending first session, and getting ready for second session

Ready to horseback ride, summer 2011

Where we were: one year ago today....

On our way up to camp this morning...talking about Sammy much of the way.

Feather on the path tonight at camp

Life Out Loud

I'm missing him more than ever.
Every day...thinking of him.

It's under the surface, always there.
I move through everyday life. I'm traveling, taking classes, and generally acting like a "normal" person.
I look like I always have. (with shorter hair)
But I'm not the same.

I used to talk about living my life out loud. I have always loved social media for the way that it allows me to share the deepest and shallowest parts of who I am in a way that is so very true to who and what I am and want to be.

Throughout the last two years, I have continued to live life out loud. We have blogged and shared our story so that we could continue to be true to that ideal. Who we are is who we are.

It's been over six months.
I know and you know and everyone knows that six months is so very short.
We're not "over it." (We'll never be "over it.")
We haven't "moved on."
We haven't even really moved forward.
But we're not standing still either.
I miss him with every fiber of my being.
I think about him all the time.
Nearly everything reminds me of him.
How can it not?

But I don't always say it, or write it, or point it out....

Am I still living my life out loud?

It's not like I shared everything online. People used to tease me that I never left anything out...but of course, I did. Even though it might have seemed like I was setting it all out there, much still went unsaid, even throughout Sammy's illness and death.

But now? Now I struggle a little bit more with living my life out loud.
Now I wonder....do people really want to continue to hear about what is really inside my heart?
Even in person, I can feel the air change when I say his name, when I tell a story about him.
Do I still want to remind you of his face, his laugh, his existence?
Yes. I do.
It's all I have...

I'm not asking for permission, by the way, or validation, or even approval. It's not that I don't care what you think as you read this, but I just want you to know that I'm not writing this because I need to know. I'm just trying to figure out who I am now....

Feather on my walk to class in NYC

It doesn't seem to matter to me that we've gotten through half a year. Half a year's worth of milestones and holidays, half a year's worth of memories....that he just isn't a part of. But it's more than that, right? He won't ever be a part of the many many milestones and holidays and memories to come, either. Just...not there. 

The St Baldrick's Foundation is part of a campaign to sound off to Congress during Childhood Cancer Action Days on Capitol Hill, and one of their posts this week reminded readers that the average number of years lost when a child dies of cancer is 71. SEVENTY ONE years. I'd like to believe that Sam would have lived even longer than 79 years, wouldn't you? I can't even begin to contemplate all the milestones and holidays and memories that won't happen in those 79+ years. It feels so overwhelming.

That's a lot of years.

In honor of Sammy's disdain for popsicles, I ate one on a  hot day.

A year ago at the zoo