Bothered

We dropped Yael off at camp for a short session, her first.
I couldn't help but think that if Sam were here, he would be annoyed that Yael is at camp while he is at home. Even if I reminded him that HE got to go earlier in summer, he would still be annoyed. "I still think I should get extra camp because I missed out on the other summers."

This got me thinking about other things that Sammy would find irritating:

Sam would be sending lengthy missives and artwork and packages to David at camp and receiving scribbly letters or postcards or nothing at all in return. He would find this immensely bothersome. "Why isn't he writing more letters?"

Yael's current pastime is to put on "shows" in which she uses a toy microphone to sing made-up songs. This would probably have made Sam crazy. I can hear him: "that's not really a song!"

Solly's constantly chattering about Transformers. Sam would have either found this irritating or maybe, just maybe, this one would be something that they shared and Sam would be in love.

I wish he was here to be annoyed and bothered and irritated and crazy.

I wish he was here.

Orphan. Widow. These are names that define us by those we love who have died.
There's no name for a brother or sister whose brother has died.

Just sadness.

237 days...

Where we were a year ago...it wasn't good news.

Classic Sam grumpy face

Check out that face on Sammy....Passover 2011

Sticks and Steps

On November 12th, we got a new minivan.

Michael went to get the new car while I took Sam to the hospital for what we thought was a routine biopsy. Until it wasn't. It was a pretty awful day and we probably wouldn't have done the car thing that day if we'd realized what was going to happen.

But....it did. And so we had a new car.

The old minivan had a little series of people on the back. Before they were on every car around town, I thought the idea was adorable. I waited until Yael was born and special-ordered our then-family-of-five in stick figures. When Solly was born, four years later, I added on one more little person.

The old minivan had our family of six permanently stuck to the back of the car.

I think often about that old minivan. How grateful I am that I don't have to see those little stick people any more, knowing that they would probably be a painful reminder. And yet I miss them terribly. I miss all that they represent.

I'm so reluctant to number things or name things now. When we're counting out plates for dinner or chairs for the table..."so there's five of us tonight," I might say. I'm not in denial. But I still can't quite believe that it's permanent...forever.

There are two stepstools in our bathroom. One of them spent a lot of time at the hospital. From the beginning, Sammy wasn't tall enough to reach the sink or comfortably sit on the toilet. So we brought a stepstool from home. After the first round of hospitalization, we forgot it at the hospital. They kindly wrote his name on it in big letters (with a smiley face) and saved it for us for our next admission.

His name is still on the stepstool.

Solly calls it the Sammy stool. The sharpie is fading away, after repeated bleach-wipings and regular use. But his name is still on the stepstool.

Solly, wearing Sammy's PJs....

His clothes are still in the dresser.
His artwork is still clipped to the display-line in the kitchen.
His presence is all around us.
I wish it helped me miss him less.

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