The Year that Was

On January 4, 2013, Sam rang the bell to signal the end of his treatments.
The first week of 2013.

On March 29th, he was wheeled down the hall for a bone marrow aspirate to confirm what the doctors were pretty sure that they already knew...relapse.

On August 27th, his new stem cells were welcomed into their new home.

On November 12th, another bone marrow aspirate confirmed, yet again, what our doctors were pretty sure that they knew.

And on December 14th, our incredibly well-loved Sammy took his last breath.
 
It just seems so unfair and horrible, so crazy and unbelievable, so inconceivable...
From the fullness of hope in January through the twists and turns of the summer and to the ultimate depths of December...
The year 2013 was a roller coaster. Ups and downs and all arounds.
Stop the world, I want to get off...
In 2013, we lived each minute, each moment. We never took a single bit for granted.
How could we?

I will never ever ever understand.
And yet, I will always be proud of this year. Of the work we did all year long, of everything we did for Sam and for all our children. I will always be proud of the way that we kept Sam healthy and happy, of how we made each day possible and how we never let up in our belief that we would get through this. We flushed those darn lines and we ran that darn micafungen and we washed our hands and we kept him out of the hospital all summer long, through multiple rounds of chemotherapy and bone marrow aspirates and tests and worry and fear…we uprooted our family to live at the Ronald McDonald House and we went to art therapy and music therapy and family dinners…our kids went to camp and school and the library...we went to the museum and the zoo and yoga and pottery, we watched movies and we played games, we played outside and we spent time with friends…we sucked the marrow out of each day, even as his marrow continued to fail him. But we did not fail him. Our doctors did not fail him. We did everything humanly possible from our end and I will always believe that our doctors did the same from their side, to the very best of their medical knowledge. And we still did not get what we wanted.
And I will never ever ever understand.

...So we face 2014...our first year without Sam.
I am paralyzed when I think of all that he will miss. I am overwhelmed and breathless when I imagine the future and he's just not there. Yet I know that we will awaken each day, and we will move forward, even if it feels like we're slogging through a thick fog, even if it feels like we're just moving for the sake of moving, even if it feels like we're faking every moment...we will keep going.

2014, here we come. Be gentle on us, please.

New Years' Eve - December 31, 2008

Bubble Baths and Turtle Space

Solly has been taking a lot of bubble baths. I'm spending a lot more time with him than I have in a long time, and he is a big fan of the bubble baths. Sam loved baths too.

I get to sit next to Sam's flowered shower curtain while Solly takes a bath.
I think about all the baths I sat through for Sam.
I think about all the bathtimes I might not have appreciated. Did I rush him? Did I rush through? Did I fully appreciate and enjoy each moment? I'm sure I often said, "hurry up" or "are you done yet?" Sam's last bath was in Orlando. He was skin and bones, and it hurt me to watch him climb in and out of the tub. But I sat with him and didn't rush him and I tried not to cry.

So there are bubble baths. They are like a balm to the soul, really.

Maybe you know that Sammy had a pet turtle.
His name is Speedy. He joined our family last year, right after Sam's treatment was complete.
I'm not a pet person. Turtles are a lot of work. At least they don't need to be walked on freezing cold mornings. But it's still a lot of work. Sam loved having a pet turtle. So it was okay.

In the few weeks at home between returning from RonMac and Sam's relapse, he spent a lot of time sitting in front of Speedy's habitat, trying to figure out what would get the turtle's attention. But for the most part, he's a turtle. So he didn't respond. Sam didn't stop trying. He was sure that Speedy likes red Legos better than blue ones. (Sam wasn't allowed to touch him, something crazy about a compromised immune system.)

Speedy went to a new home this week. No one really loved him here like Sammy did. Each morning, when I fed him his organic spring mix, I cried a little. I was ready, right away, to find Speedy a new home. He wasn't a sweet reminder, like the shower curtain. His presence was difficult and painful...the poor little creature.

I'm grateful to our friends (one of whom was a special pal to Sammy, so it's even better) who have given Speedy a new home, a home that already has a fish tank and a lot of love for a little turtle who just likes his purple lettuce leaves and (probably) doesn't know that his previous BFF has died.

But we know.

Speedy's space

 

There's an empty space in our living room where Speedy once dwelled.
It's nothing compared to the empty space in our lives....

The Silence in the Middle

There's a distinct quiet in the middle where Sam's voice used to be heard. Where Sammy would voice his opinion or lodge a complaint or request his turn is silent, a void unfilled by his sweet or sometimes cantankerous voice. There is the series of alarms for medicines now silenced and unnecessary after his death. I've erased them from my phone. There is the silence in the middle of the night where Sam's nighttime arguments would be fought in his dreams (ok, Solly sometimes picks up where Sam left off). 

While some of this silence adds a certain calm to our family, I feel it viscerally in my soul even if I can no longer hear the sounds I know aren't there. 

For our three other children it is as if the silence has set them loose as satellites slightly orbiting each other at a greater distance now. At twelve, David is embracing his independence. He buries his head in books that transport him far away from all this. He cocoons himself in his bedroom watching season after season of his favorite television shows on his iPad. He had eight full years with Sam and knew him the longest amongst our kids. He remembers the most and feels the most but intersperses his own silence with playful requests to be tickled viciously in order to feel youthful joy within our familial sadness. 

Yael is blossoming the most out from Sammy's shadow. Her voice has been heard (loud and clear from such a vocal baby) ever since she was born. But Sammy was louder. She learned from Sammy his battle cry of "that's not fair." He took up this cry from seeing perceived inequalities both above and below, sandwiched between David and Yael. Now, however, she uses the phrase less. She only has David to compare to and we do our best to remind her that there really is no "fair" ("especially without Sammy," whispered quietly in my mind, but never out loud). 

And finally Solly, who has spent half of his life acclimating to living without Sammy all the time he was in the hospital. Solly has never been quiet. Solly is the most vocal over his needs and wants. I mean, he's a toddler. Doesn't the world spin entirely around his axis? 

He has essentially been out of pre-school more than he has attended these last six weeks. He travelled to Israel and Orlando with us all and now is on winter break. Solly has never feared asking, yelling or screaming for what he wants. Of all the kids his voice often drove Sammy nuts, especially towards the end. Sammy couldn't believe how loud Solly was or how he usually got his way. In the end, Sammy loved Solly but had little patience for how Solly's own personal exhaustion manifested itself during our most recent trips. He showed this amidst the noise and chaos by ordering a last birthday present for Solly (with his own money) that he would never see arrive (Solly loved the viking helmet and How to Train Your Dragon two headed dragon immensely). Solly may never fully understand the silence that lives where he would have told stories to Sam.

After a death life moves on. We have three children who need our love, affection and attention constantly. They don't want to mourn quietly, sitting at home. Their grief is a more subtle entity in their lives than my grief as a parent. They want playdates, sleepovers, to go to the movies and trips to Target. They want noise. They fill the silence with their play, their laughter, their small arguments, their wants and their needs. They fill the silence with their living. 

In life there is nothing wrong with silence. In a good relationship, sitting quietly is comfortable. In our home, mourning the loss of Sam, the silence is often the places where Sam would have been heard. There is a lot of love in the noise of our home that pushes the silence in the middle back. But the sounds of Sam that are missing still hurt my ears the most. 

Thanksgiving 2012

Sammy, 2007

Birth...day

A few years ago, we spent my birthday in a hotel.

A hotel with an elevator.

The kids were fighting over who would get to push the buttons.

Over and over and over.

Each time we rode the elevator.

So on my birthday, I announced that for my birthday, the only gift I wanted was to be allowed to push the elevator button. All day long.

And it was granted. (Other parents reading this may understand the fullness of the joy of this gift.)

The next day, we got into the elevator. I reached for the button, clearly forgetting that my birthday was over.

Sam pushed my hand away and disdainfully said, "It's not your birthday anymore, mom. I get to push the button now."

Favorite birthday memory ever.

My birthday is on Saturday.*

I think most of my mama friends would tell you that our birthdays tend to be less of a big deal than our kids' birthdays. Okay, maybe that's just in my house. But that's just how it is. My birthday is always at the end of a long string of family birthdays…I don't mind. I am not one of those people who dreads getting older, and I like the general fun of having the whole world wish me a happy birthday. 

But this year?

Oh my. I'm not ready. I'm not interested.

It's hard to believe that I'm going to be one year older.

And Sam never will.

I am going to be 37 years old. And then 38…and 39…and continue on (God willing).

And Sam will remain forever 8 years old.

Forever.

How is that possible? How can it be?

I've been scared for my birthday. How will it feel to have people say "happy birthday" when I'm really quite far from happy? Is a birthday one of those things that if you skip it for one year you can skip it for good? Will I want to celebrate my birthday someday again? It's not that I don't want to get older…I am so very aware of the beauty and blessing of each minute, each day, each year of living…I just don't have it in me to celebrate….

*A whole different post, a whole different conversation -- a birthday on Shabbat is so nice and quiet, but the Facebook notifications pile up, don't they? And also there's the whole thing about Sam's death ON Shabbat…changing it forever for me. But these are fragments of thoughts I've had…

In Solly's Head

Solly, in the bathtub: Mommy! Let's play "dead" like Sammy!

He's 3 years old.

"Dead" means Mufasa, who falls to the ground and doesn't wake up but reappears in the sky later in the movie.

"Dead" means your character in Jetpack Joyride crashes and burns and then reappears for the next round. 

"Dead" means an iPad out of charge that works after you've plug it in. 

And "dead" means Sammy. 

Processing my own grief is hard enough.
What do you mean he's never coming back? I keep counting heads. 

But for Solly? Unfathomable. 

He's never really known life without a hospital as part of it. He was only 15 months old when Sam was first diagnosed. He's never known life "before" cancer. Those few short months of remission from last November til March? Even I have trouble remembering them. How can I expect him to do so?

But I don't want Sammy's words to become true:

Solly's not going to remember me. 

So when he says Sammy's name, when he wants to look at pictures, when he talks about his brothers...I encourage him. I keep the conversation going. I ask questions and I don't shush him. 

I think I just want to talk about him too. 

And P.S., so much of Solly is just like Sammy. I hear his voice...and the names of the dinosaurs that just trip off his little tongue...

Solly, with the gifts that Sammy selected for him for his birthday...right before he died. The gifts arrived after Sammy died.

Sammy, August 2007, in the bathtub

February 2012 - Sammy and Solly sharing a smoothie

Displaced

Back in July of 2012, we were just getting used to Sam's treatment.
He spent almost all of June in the hospital, came home at the end of his first round of chemo for almost two weeks, and then went back into the hospital.

Back then I wrote this:

You know, six weeks ago we came to the hospital for the first time. Six weeks ago, this was a totally foreign place. Everything was new and uncomfortable. Our walls were bare. We had no idea what to expect. We didn't know how to handle things. We didn't know what to do. Sam was a wreck. He hated every minute of it. He hated his pole. He hated walking around. He hated every nurse and doctor and whatever-medical-professional who walked in the door.
And so did I.
Six weeks ago, walking into the synagogue felt like walking into home. When I went there on Friday...it felt odd. Strange. Foreign.

Obviously, Sam's funeral was held at the synagogue, and we observed three nights of shiva there as well. It's not like we haven't been there throughout all of this nightmare.

But on Friday night we went to Shabbat services.

And it was so very very hard.

It felt, to quote myself, odd…strange…foreign.

Perhaps it was because I'm relatively unused to being a "Jew in the pew"…and perhaps it was because our  Shabbat has been so home-based in the last few months (my kids are definitely out of practice in the attending-services department). It wasn't because the service is different (not that much), it wasn't because the sanctuary has changed (it hasn't) or the people were unusual (a lovely crowd who gave me hugs and love)…

Oh, and perhaps it's because I just miss Sam.

I felt uncomfortable, displaced, and out of sorts…like I no longer belong in my own skin.

And uncomfortable, displaced, and out of sorts are pretty common feelings for me right now. For all of us, I think. We are feeling our way through this new sense of our family. Who are we? Where do we all fit into this new order of things? How do we work around the hole in our family and how do we pick our way through whatever minefields we might stumble upon? We are used to putting Sammy's needs at the top of our list, we are used to timing and scheduling around clinic visits and medicine doses. We are used to choosing our meals based on his palate, which grew more and more limited. And now....?

I will admit, I'm nervous to go out. Staying home feels quiet and safe. The world feels harsh and bright and full of a cheerfulness that I'm not ready to muster.  But I can't stay here forever and I've already told Solly that I would take him to the dinosaur museum...an outing that will most certainly be full of Sam-ness. 

It's only been one week since we last saw him, touched him, talked with him…

I never wrote the story of our photo shoot the day before we left for Israel. We used the synagogue as a space, since the weather was iffy. I never imagined photos in the sanctuary, though, just a use of the nice bright rooms and courtyard. Sam had other ideas and insisted on photos on the bima. My fearsome foursome…(with thanks to Martha Abelson for this picture)

September 2011 -- all dressed up for Rosh HaShanah -- he called these his "handsome clothes"

Distracted

I'm constantly distracted. I start one task and then jump to another. I compose a blog post in my head and it is lost a few minutes later. I go to get something for one child and I end up with another thing in my hand. I start a sentence and I trail off…perhaps I have forgotten how to think, how to breathe, how to write…? I have started and restarted this post so many times...

Remembering…Sammy and Solly at OSRUI

The silence in the room when we walked into the funeral was thick. It was breathtaking. It was filled with pain. I could hear the collective breath…

The snow fell on Sammy's grave and the edges softened…so many shovelfuls...

The room of shiva was never empty...The hugs were never ending. The love was palpable.

I hugged small children. So many of Sammy's friends.
I hugged 8 year olds and consoled them on the death of their friend.
I kissed their sweet little heads and I told them how much Sammy loved them.
I remembered birthday parties and playdates and excursions.
I saw their parents' eyes filled with the pain of knowing that their children will never forget this moment when their little people became mourners.

I hugged teenagers.
So many teenagers.
They feel the pain of death so keenly at that age.
They believe they are immortal -- this cuts them to the core.
I have seen teenagers in grief and it is heart-shaking.
But I felt such a swell of pride in my heart as each of them embraced me.
These are the students we have taught, we have taught them oh-so-well to love and care and bring comfort.

I have never felt such shared grief before. We are all mourners, such deep sadness.
And yet I am the one who types this at 2am, in a house that has one child missing.
Thank God for all of you, God's Messengers on earth who hold me up.

I can't keep up with the messages and emails and texts.
I am overwhelmed with them.
I think it is in a good way.
I scroll through my Facebook feed, my email, my texts... and cry.
My friends, my sweet wonderful friends, who are doing what they do best.
Writing…sharing…posting….and of course, fundraising.
So many posts.
Articles….oh, so many articles.
(Would a good mother keep a scrapbook? A good blogger might have a list of links.)
Sammy is famous.
I can think of a hundred million billion other ways I would have wanted it to happen.

I can begin to understand the hair-ripping mourning custom of ancient days. Outwardly, I look the same. I am not shaving my head* until March. I think that will be the right time. I know I need to wait. (It's also very very cold…)

But there's a piece of me that wishes I was doing it right now.
Today. A huge, painful, visible change…many years ago I gave a sermon about perfectionism. I started out by talking about Yael's head-lice, and how I had shaved her head (and Sam's too, by the way). I said something like, "she is now a bouncing, giggling, bald reminder that we are very far from perfect."

Oh, how far from perfect we are...
Oh, how far from complete.

So this is what it feels like…

*That link is to Michael's St. Baldricks donation page…just to balance out the fundraising…#baldestparentsontheblock - we feel equally helpless…

Remembering…September 2008…the headlice shaving incident