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

Instead

Last October, when the camp registration opened, I counted ahead to the first day of camp.

+293

293 days post-transplant.

I remember chatting with Dr. M in those heady, happy, oh-so-few days of October remission -- "So, let's just speculate....293 days post transplant....do you think I'll be able to send Sammy to CAMP?"

He declined to answer. "Let's wait on that one," I remember him saying to me.
We laughed a little about how I was always planning ahead.
We discussed how he could possibly go to camp with us, but probably wouldn't be ready to sleep in a cabin. He wouldn't commit, and I didn't make him.

But a mama can dream, right?

Every family has its milestones.

Opening Day at OSRUI is one of ours.
Going to sleep away camp. Being one of the "real campers."

In summer 2012, we stopped up at camp on our way to the hospital

In an alternate world, today would have been his first day as a "real camper," entering 3rd grade in Kallah Aleph for two weeks. I can imagine packing up his t-shirts and shorts, his swimsuits and raincoat. I can imagine his black socks and crocs as he headed off to his counselors and cabin, his chugim and his swim lessons. I can imagine the baseball cap covering the soft, chemo-curly hair. I can imagine the letters I would write to him, "Dear Sammy, I hope you love camp." I can imagine the letters I would get from him, "I don't miss you at all, Mom." I imagine him, sitting in a circle with the other kids, hearing the cheers and introductions, freshly-scrubbed, slightly-nervous, happy and excited with a twinge of home-sickness but ready for adventure. I imagine picking him up, grungy but no-worse-for-wear, sticky and sweaty and glowing with the joy of two weeks at camp, chatting up a storm and singing camp songs.

And yet...

Instead of writing him letters, I'm writing these blog posts.

Instead of labeling his clothes, I'm watching Solly and Yael wear them in his memory.
Instead of putting a hat on his head, I'm trying to remember what it felt like to kiss his head.
Instead of finding him a water bottle, I'm watering the world with my tears.

Instead of filling out camp forms this week, I filled out the forms to purchase a headstone.

Second Guess

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

I try so very hard not to do this.

Not to think about what might have been.

What we could have done differently.

What we should have done differently.

What our doctors could have done to change things.

What could we have done to make last summer different? 

What kinds of decisions did we make that destroyed our hope of Sam's 9th birthday? 

As our summer begins, I can't help but linger in last summer's shadow.

Last June, when he was getting chemo and living at Bubbie & Zeyde's house

Later in the summer, at the Ronald McDonald House...of course, he climbed up there.

And then I talk to the people who know.

I ask the questions.

And I know damn well, deep down, that we did all that we could.

Because I also have the other side of the second guesses screaming in my head:

How much more awful it could have gone.

How much more time he could have spent in the hospital.

How much more scary and ugly and painful Sam's last few weeks could have been. 

How we might not have even had time to say goodbye.

We only get to do this once, I remember the doctors said to me. We only get one shot at this.

We only got to make those choices one time.

The secrets of Sam's biology, the mysteries of his leukemia's biology...they will haunt me forever.

Last year we poured poisons into his body and he bounced right back.

Last year we poured toxins into his bloodstream and he swung on the monkey bars.

Last year we shot him through with deadly radiation and he twirled a hula-hoop.

We couldn't have done any more or any differently. Really and truly.

But oh, how I wish we could have.

Pages

I recently ordered from an online service called MySocialBook.
It's a hardcover, full-color book version of my Facebook activity.
From November 7, 2013 until December 31, 2013.

The last 37 days of Sam's life.
And the aftermath. (A total of 54 days.)

It's 167 pages.

All the posts from November 13, after we found about the relapse. This is one of many pages from this day.

Posts and pics from December 8, the day we came back from the Make-A-Wish Trip to Orlando.

There was a lot of Facebook activity in those 54 days.
I couldn't keep up, and I wanted a less-ephemeral record of the messages and posts and pictures and "status updates." Now I have all of your words, and I can read and re-read, I can share as the kids get older and Facebook becomes passé.

I remember back at the beginning of this whole thing, when Sam would talk about the people who "live in your phone, Mom." How could he even fathom the networks of people that Michael and I know, from so many parts of our lives, and the way that they all intersected in the interwebs to bring us comfort and connection? How could a little boy who couldn't, at the time, even read a book, understand how we could read email after email and derive comfort from distant and sometimes-never-met-in-person friends?

I remember trying so hard to explain it to him.
I remember how you all helped so much, filling his room with cards and letters and photographs of yourselves dressed in superhero costumes. Did I ever thank you enough? Thank you.

Sam's first room -- E571

I know how much that meant to him and to all of us.

I'm the keeper of our family history. I'm the teller of our family's stories.
Sometimes I wish I wasn't so keenly and painfully aware of "last year on this date" or "two years ago on this date." Sometimes I wonder, if I hadn't kept such careful records, such detailed logs of our daily existence...would each day feel less weight, less pain? Would it hurt any less?

I'm guessing the answer is no.

The Bean Room

Way back in the fall of 2005, David was 4 years old, and I was pregnant with Sam.
I got a call from David's preschool.

"David put a bean in his ear."

What? Oy!
A bean in the ear was our first-ever trip to the Emergency Room with one of our kids.

I remember that we joked and laughed. (I remember that the doctors in the ER reviewed my High Holy Day sermon, too.) We made sure that David learned the important lesson to never put anything bigger than your elbow into your ear. And I recall that we taught him the word "orifice" and extended the lesson to not put anything at all into any orifice of the body. We blew up rubber gloves and never imagined what other terrible reasons we could come to the ER.

And of course, I remember exactly which room we were in at the Highland Park Hospital ER.

Thursday (yesterday), the anniversary of Sam's leukemia diagnosis, Solly decided that he needed a trip to the ER. He pulled his arm away and acquired a diagnosis of nursemaid's elbow, which is painful and needs attention, but is pretty common and easily fixed.

Needless to say, however, Michael and I were shaken by the idea of a trip to the hospital. On this day of all days. They took his pulse-ox and they stood him on a scale just like the ones at CHW. They took his blood pressure (using the green cuff, he's very small) and his temperature. The thermometer beeped straight to my heart.

But then we were "roomed" and Michael looked at me.

"It's the Bean Room," he said.

And we smiled.
Even in the midst of our fear and sadness, we knew that this was scary but not life-threatening. Even as I ran through all the ways this dislocated elbow could become something horrendous...I knew that it was, like a bean in the ear, an incident that we would recall with a "do you remember when" instead of a sinking sick feeling.

It wasn't how I expected to spend the morning.
Anniversaries like this one are really icky and sad...
But new things happen. And we move through them.

Remember how much Sammy hated popsicles? Solly doesn't feel the same way.

Sam at CHW ER

Just because he's cute...

Unmoored

I landed in Israel, and as Shabbat ended I learned that another sparkly, beautiful, too-short life had been ended by cancer.

I was filled with white-hot anger, with a terrible sad rage that I contained beneath dry eyes.

I love Israel. 

I love the Old City of Jerusalem.

I love the ancient stones and the way the sun turns them golden.

I do not feel any closer to God in Israel than I do anywhere else in the world.

I do not feel that my prayers at the Kotel, the Western Wall, are any more holy or heard any more loudly. I just don't feel that way.

In fact, I don't feel much at all when I go to the Kotel.

I marvel at the age of the wall, the way that the hands of the generations before me have smoothed them with their fingers. But I don't feel God there any more than I feel God elsewhere.

Random brick wall in Highland Park...

I contained my anger and sadness as I moved through most of the next day, conducting errands and ordering (lots of) coffee in my rusty Hebrew. And then I made my way through Jerusalem to the Old City. Almost on their own, my feet made their way to the Kotel. Like a woman on a bit of a mission, I headed straight for the Wall. 

And I gave God a piece of my mind.

The piece I've been aching to give for quite a while now. 

Very quietly, though, since I don't think that the worshippers at the Wall on that Sunday afternoon would have appreciated my searing fury. 

This was no dialogue. This was a monologue in which I screamed and swore and threatened and cried.

I do not have perfect faith.

I do not know how to talk to God right now. 

I most certainly have lost my politeness.

I don't know how to invite God back into the conversation. I am not ready.

I hate God, Sammy said to me.

I could have answered, "Me too."

I do hard things.

I walk forward in the world.
I am, for so many intents and purposes, not broken.

You would not know, to look at me, that I am unmoored from my relationship with God.

I move through each day, as I've done before.

That same afternoon, Michael texted me: "How's your heart feeling?"

Sad.

Aching.

No words can adequately explain the way my heart continues to hurt when I realize that school ends tomorrow and this year, this year that Sammy was a 2nd grader, is coming to an end without him...that the summer begins without him...that the next year will start without him...

My heart is shattered into so many pieces that I can't even begin to collect them all. 

And it's been 180 days.

Feather on the ground right outside the David Citadel Hotel, where we stayed with Sammy

Overlooking the Old City...