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...

Punching Walls in My Head

I punch a lot of walls in my head. I'm not dumb enough to punch them in real life, I mean after all I could break my hand and then still have to fix the holes myself or pay someone to fix them all (since my hand would be broken and there would be a lot of holes). There are many mornings where I look at the smiling pictures of Sam and still ask "Where are you?" Then for some inexplicable reason I feel like punching a wall. I know it won't make me feel better, but it will feel better than doing nothing.

A lot of my work these days takes me to the cemetary where his tiny body is buried. I know he isn't there and that it is just a place. I chose that place because it was close and because knew I would have to go there. It was a discussion whether to place him where we often work or to bury him in Milwaukee near family. I chose close so that he wasn't hidden somewhere far away where I could pretend it was always too far away to visit him. Now work so often brings me close to him. When I am finished working I often drive over to him, walk beneath his tree, shed a few tears, scream in my heart and blow him a kiss goodbye. Then I get in my heart and try to do my best to drive without blurred vision. But truly, I would rather he be this close than far enough away to ignore or only go once a year.

I know better than to look for answers. My time is better spent fighting to raise money for a cure (even if it means growing my hair out and being ugly for a few months). My time is better spent making the lives of those being diagnosed right now better in some small way.

Sammy is always with us whether in pictures, memories or the ways Solly, Yael and David all individually remember him and say something about him each day. I just must hate unbroken walls now or something.

This is actually Solly a few weeks ago wearing Sammy's Angry Bird pajamas.

The similarities to Sammy in that moment was like seeing a moment I'd lived a thousand times.

Retreat

Back in March, I was contacted by a very famous spa, the Miraval Resort.
It turns out that an incredibly lovely friend of mine had nominated me for a new program that Miraval had created, called Miraval Gives Back. You can read all about it here on their website.

And they'd selected ME as their very first recipient.
(Winner doesn't seem quite right. So "recipient" will have to do.)

The program is particularly directed at someone who is undergoing a "life challenge" and could use some personal time to "find balance and make positive, lasting life changes."

It was quite a lovely shock, and we scheduled my visit to the resort for the end of May.

I've never been to Arizona and I've never been to a spa. So this was a whole new world for me.

And I was not disappointed. What a place. What a world.

The stark beauty of the Arizona landscape was remarkable to me. I've never been in a place that felt or looked like that, and I marveled at the wildlife, the cactus plants, the beauty of the rocks and mountains. (Oh....and the heat. Oy.)

Painting is so much more fun when someone else cleans up.

I did yoga and I did tai chi (in a 98 degree pool!). I ate breakfast, lunch, dinner and a lot of fresh juices...and as many desserts as possible. I had a hot stone massage and a water massage and a facial and a body scrub. I swung from a 35 foot high swing. I piled rocks. I drank tea. I listened to the sounds of the Himalayan singing bowls. I meditated. I breathed. I walked and hiked. I painted and talked. I read and lounged and smiled and cried.

ME! Swinging!

Yoga with a view is quite incredible

It was healing and beautiful. And it reminded me how much I love my family and being with them, which is a nice way of saying that I missed them a lot. It was a place in which Sam had never been, and yet it was so full of him. It was exactly the kind of place that he would have loved. Bugs galore, lots of rocks to collect (once he collected so many rocks at the beach that I could barely push the stroller back to the car - he had loaded them into the basket and I didn't realize it!), and there was even a marked turtle crossing, although I waited there for quite some time and didn't see hide nor hair nor shell of a turtle.

Rocks EVERYWHERE

Is this for real? I never saw a turtle. 

All the feathers that I saw, including the dream catcher one (top right) that greeted me when I sat down to check in.

One of the hardest things for me to consider is all the experiences that Sam will never have with us. We can never again share new adventures with him. He is frozen, forever, with the experiences he had. So it has made me a little fearful of the new, the next, the upcoming. How can we have a new first day of summer without him? How will we begin school again in the fall without him? How will we celebrate milestones and major life events without him? But the newness of this Miraval experience helped me to see that, hey, I can do new things. And I can take Sammy with me into the newness. Wherever I go, he goes....it's just a fact. New and old, he's there with me. And I am so grateful for this learning.

To my family (especially Michael!!) and work, who allowed me the time and space to travel and experience this...thank you.
To the Miraval team that welcomed me and cared for me, thank you. I am so moved and appreciated by this monumental gift that you gave to me.
To my friend Julie, who nominated me in the first place, I am beyond words at the incredible way that you lifted me up. Thank you. 

Cactus Selfies - I actually tested out the prickles on most of them too. Ouch!

At Bedtime

People are always asking me how the kids are doing.

And I usually say, "they're doing okay."

And they are. Mostly.

It seems that the sadness comes out at bedtime, during these conversations when Solly (in particular) is trying to keep himself awake by talking to me.

Yesterday....(and similarly so many other days)

Solly, plaintively and decisively: I want Sammy to come back. I know he's in my heart. But I don't want him in my heart. I just want him to come back.

If it wasn't so heartbreakingly sad, it would make me laugh just a little bit at his impatience with us. 

And then today....

Solly: I'm sad. I miss Sammy.

Yael: We saw the first star and we said a wish.

Me: What did you wish for?

Yael: Solly wished that Sammy would come back. I wished that he never died.

Oh, yes.

Me too.

We move through each day, mostly "normal."

But in the quiet moments...in the stillness of the night or in the pauses between things...

I know that Sam is always on my mind.

And while it tears my heart into a million pieces to know how desperately sad my children are at his absence, I am also glad to know that they can talk about him, that they can tell me how they feel, that they have each other to lean on, even at their very young ages. I've always said that each of my children is a gift to the other ones (even if they don't always see it that way)...I hope it is always so for them.

P.S. It's not that David doesn't have his own moments. But he's old enough that I feel like he can speak for himself...and maybe even that I shouldn't speak for him in this public place. 

P.P.S. Where we were a year ago..."Scared doesn't even begin to describe the way that I'm feeling now."

These two spend a lot of time together now.

David and Yael

David and Sam doing trampoline in December 2013 - remission

Sam teaching Yael piano....so many pics of these two together. Now I take pics of Solly and Yael, but before they were all of this pair...we called them the "littles" and then after Solly was born they were the "middles."

These three were a team...

Solly and Sammy