Tuesday, August 19, 2014

Class Lists

The class lists came out.

Preschool orientation happened.

Visiting the rooms that Sam inhabited. Seeing the teachers.

His classmates, grown taller and sturdier over the summer. Their sweet tanned faces filled with the anticipation and expectation of a new year.

And Sam's not there.

We're all moving forward into the newness of the new.

And he's frozen forever...with us but not with us. There but not there.

New teachers who didn't know him.
New people to meet who never knew that my children once had one more living brother.
New faces to explore and see the recognition in their eyes when they realize who we are.

Third grade.
He was supposed to be starting third grade this year.

Time rolls on, without him.
Time rolls on, and we roll along with it, acknowledging milestones, moving forward, continuing to live our lives.

This week began a huge series of historical milestones in Sam's life. A year ago, we had an epic trip to Disney and shortly afterwards began the BMT process. Each day, I was completely and totally aware of the date and the number of that day. I watched as my other kids started school. The high holy days were just around the corner. Each moment was a progression, an event, an experience. Each moment was documented and recorded, because that's how we do things. His BMT "birthday" is coming up, and I really had imagined a huge blow-out pool-party-carnival-extravaganza to celebrate.

But that's not what we have.
And so I try to hold back the tears, and sometimes they fall anyway.
First day of First Grade (and fifth grade for David)
First grade...
Kindergarten (we might have a family tradition of checking out your locker size)

Kindergarten and fourth grades

First day of Kindergarten

Tuesday, August 12, 2014


So many kids came home this week from their time at summer camps all over the country.

"My house is full again," someone told me.
"We're all back together again," another one said.
"Family complete," said a third.

David and Yael returned to the nest after their time at camp.
I was so glad to see them.

And yet it felt so incomplete. My nest will never feel complete again. In some ways, having them out of the house in various waves made it easier to feel the conspicuous absence of Sam. Always there.

We settled down to our table set for five.


Thinking about starting school and filling out forms -- one whole set left undone.


There was an article published this week about a blessing for "completing" one's family.

Perhaps I'm just superstitious, but I never wanted to close the door on that. Sure, I knew that I was probably done having babies. But I never felt that the word "complete" was the right one for how my family felt. It was good, it was wonderful, but I couldn't close the door on welcoming someone, anyone, into our family. In a sense, we were always incomplete, always ready to open our doors to someone else...biological or not.

But this article gave me pause. Because without realizing it, I had considered us a "complete unit."
And now we're not.

We're incomplete.
Returning from camp 2012 -- I took David to shower and put on new clothes before he could come to the hospital to see Sam.
Returning from camp 2013 - right to RonMac (and also a shower, of course!)
And this year...
Where we were a year ago: welcoming David "home" from camp to RonMac
Where we were 2 years ago: having "fun" in the hospital

Thursday, August 7, 2014


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

Friday, August 1, 2014

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.

Sunday, July 27, 2014

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. 

Monday, July 21, 2014

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. 


Feather on the ground at Bay Beach in Green Bay yesterday

2009 at Bay Beach in Green Bay

Wednesday, July 16, 2014

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.