Living Life Backwards

I feel as if I'm living my life backwards.

I wonder if on that last night as I kissed Sammy goodnight and he said "David, Dad's kisses on a bald head are the best. You should try it sometime," if I had known that was his last coherent moment would I have kept him up all night and talked and held him until morning light?

If I had known what December would bring would I have spent months snatching his iPad away more and telling him we had to dance and laugh and scream as if there were no tomorrows?

If I know what I know now would I have yelled less when he had trouble taking his myriad of pills and spit one up in the sink, knowing that no amount of pills would be enough to keep him alive?

If I knew what I knew now would I have fought harder for parallel holistic and naturopathic means of helping him fight his leukemia or researched each night until dawn until I uncovered the secret cure for all children for all times?

If I knew the transplant was going to work but not work would we have just stayed on outpatient chemo as long as we could, living strong in the moment and run through every day as if it were our last?

If we had looked up and known the truth for a moment would he and I have written more stories together and sang more silly songs?

Would we have demanded everyone in the family to put their iPads down and look up, look each other in the eye and acknowledge that this was one of the last precious moments we had to look out and see ten familiar eyes looking back at each other in awe as a loving family?

Would I have yelled less and hugged more, and would he have been happier and felt that life was fair sometimes because there was more laughter and less toddler frustrations?

If I lived backwards would I be able to change any one thing that might have made all the difference in the world?

I feel as if I am living my life backwards, looking back over eight short years, and touching certain moments that I wish were lived differently and wish I could change with just the gentle touch of my mind.

In case you are reading this in an email, and you missed the video link yesterday, please click here to see it.

Going Back

I really don't remember much about Sam's bris.

I remember that it was on David's birthday, and I remember being concerned that we balance the need to focus on the new baby along with his birthday. (I also remember that the birthday party, a superhero themed party, no less, took place two days before Sam was born in my need to get things done "before the baby comes.")

I remember that I stayed up nearly all night holding him, wrapped in a hot, uncomfortable, ever-so-slightly humming bili-blanket to make sure that his bilirubin level would be appropriate for the brit milah. I remember ripping open the velcro at about 5am, exhausted and frustrated and figuring that he'd probably gotten enough...

But I really don't remember much about the bris.
It is a blur in my memory, a day that seems so long ago.

I know that we said things like "you are the embodiment of your parents' hopes and dreams, you are the future realized." I know that we said something like that because that's what we say at all of these events. I know that we meant it. I know that we were so grateful for a healthy baby, that we knew damn well how things can go wrong.

What would we have done differently if we had known....? It is impossible to answer.

At that moment, I know that I never imagined what was to come.
If you had told me, I would not have believed you.

And if you had given me the chance to give it all up, to have never known Sam in order to spare us all this heartbreak....I would not take it.

The twisting inside me when I think about how much hope and love were present at the moment of his birth, the moment of his covenant...is unbearable. To know that his life just ended eight years after it began....is unfathomable.

But I would not take it back.
Never.


Our incredible friend Matt Hoffman put this video together. Thank you, Matt, from the bottom of our hearts, for this beautiful telling of Sammy's story and the story of the 36 Rabbis Shave for the Brave.
We're still raising money for St. Baldrick's. Click here to donate.

Boxes

Today I had to fill out a form.
It had space for up to four "dependents."

I used to be so proud that I filled up all of those boxes.
Four.

Today I filled out a form.
And I only filled three of the four boxes.

It should be so simple to write their names, their birthdates...
There's such a gap.
Such an enormous empty space contained inside the four lines of that little tiny box.

Missing information.

But it's not missing to the recipient of the form. They'll never know that he should have been there. They won't even know that I used to be able to fill out all four of those damn boxes.

But I will always know.

Explaining

Darn Lion King.

In the car on the way to school today, this was our conversation:
Solly: I miss Sammy.
Me: I miss Sammy too.
Solly: Where IS Sammy?
Me: OY VEY. (okay, that's not actually what I said.)

It's so very hard to come up with answers that work for this little boy, who keeps asking because, frankly, the answers are ridiculous.

Where is Sammy? Oh, honey. He DIED. I know you can say the words, but I know you don't get it.

Solly: When Sammy gets better from being dead....can we go on an airplane?

Solly: can we FaceTime with Sammy?

Me: no, honey. 

Solly: but why not?

Which brings me back to the darn Lion King. So helpful for our explanation to Solly ("dead like Mufasa") and yet not....because Mufasa appears to Simba, doesn't he? Right...."When will I see Sammy like Mufasa in the sky?" (Side note: Yael helpfully tried to compare this to FaceTime.)

So we are left with inadequate words and inadequate ideas and inadequate explanations...

But it's all of us, isn't it? I mean, honestly, who truly and really understands death? How can it be that one day he was here and one day he was not? How can it be that we put his body into the ground ("I helped!" said Solly, when I reminded him of this) and yet we are trying so desperately to explain to Solly that Sammy lives inside him (sounds vaguely scary and creepy), is always with him ("but I can't see him!"), is never coming back ("so when Sammy comes back...." he usually finishes these conversations), and isn't at the hospital any more ("when he gets better...").

Solly: How come Yael got sick and then she got better? When will Sammy get better?

Solly: When I get dead I can play with Sammy.

The biggest and most unbearable statements come out of his sweet little mouth.

And, as I've said before, I secretly relish these conversations.
They hurt, oh....so much. Tears flow. (And, thankfully, often he makes us giggle.)
But I love that Sammy is totally and completely alive in Solly's little world of denial. Somewhere, out there, Sammy is playing with toys and watching movies and dancing in the puddles. Somewhere, out there, Sammy is celebrating holidays and eating his favorite foods and wearing his favorite mismatched socks.

I love that, for Solly, Sam is out there. He's having new adventures and doing things.

Which, I suppose, makes all that stuff I'm trying to tell him completely and totally true. He IS inside of Solly. He IS always with him...

And so I will keep explaining it, every time he brings it up.
I hope he never ever ever stops.

Solly's first few minutes at home; Sam shared his lovey with Solly

Sam telling Solly a story

June 2, 2012 - 10 days before diagnosis

One year ago today...

Favorite

Many people who know me are aware that I have many "favorites." It's a little bit of a joke around the synagogue that every Torah portion happens to be my "favorite." I will often say that, just like with my children, it would be impossible to choose just one...so they are all my favorites.

Which brings me to my children, of course.

"You're my favorite daughter," I say to Yael.
"You're my favorite youngest child," I say to Solly.
"You're my favorite first-born child," I say to David.
"You're my favorite second son," I would say to Sammy.

And sometimes it changes:
"You're my favorite bluish-greenish-eyed kid," I say to Yael.
"You're my favorite non-sock-wearing kid," I say to Solly.
"You're my favorite kid-in-need-of-a-haircut," I say to David.
"You're my favorite bald kid," I would say to Sammy.
"You're my favorite kid in this hospital."
"You're my favorite kid with leukemia."
"You're my favorite kid in remission."

It's not hard to think of categories, let me tell you.

Another photo book arrived this week. This one started with Sammy's bone marrow transplant and ended with joy and hope. It ended as we came home from Milwaukee, with "REMISSION" stamped across our passports.

front cover

the last page...

Looking through that book, which I created just a week or two ago, you would think that Sammy is my favorite child...although I included pictures of everyone, there are far more pictures of Sammy than anyone else. I had a few moments of panic as I leafed through the book. What would the other kids think? Would they feel that it was "unfair"? And then I had the horrible thought that eventually there will be books completely devoid of Sammy's picture...and I decided it was okay that for the moment, he appeared to take center stage.

And that's when I started thinking about my favorite children. How is it that I love all of them so completely, so fully, and yet the absence of one can be so all-consuming? I remember when David was born, and I was so filled with the depth of the new love of a new mama for her newborn baby. How did I ever find room to love more children? I know that this is an age-old question, and many mamas (and papas) have asked it for generations. Space that I didn't even know existed came open to love each of my children, in beautiful rooms in my heart that were created long before I ever even imagined their presence in my life.

But once the heart has opened its rooms in this way....they are never closed again. There's always going to be that beautifully decorated room with Sammy's name on the door. A room filled with love and hope and dreams and stories...a room that won't ever be replaced or closed, and can't ever be filled by someone else. I am always aware of it....always.

And yet there are other rooms in my heart, of course....the ones that continue to be redecorated on a minute-by-minute basis by David and Yael and Solly....as their living-breathing-existing occupies its space inside of me. I struggle so mightily to put their rooms at the front of the hallway, so to speak, to pause only for a moment at the doorway to Sam's room as I spend my time in the other light-filled heart-spaces. And sometimes I open the door to Sammy's room and I spend time in there too...sometimes I sit or fall down in there and I cry. Sometimes I leaf through the pages of his stories and I smile. And sometimes I do both...

129 days have gone by....

My four favorite children, January 2013

December, 2012

December 2011

December 2011 

One year ago today...

Mirror

So now it's been two weeks since I shaved my head.
And I still do a double-take whenever I look in the mirror. Who is that person? The image in the mirror doesn't exactly match the image I think of when I imagine myself...who am I?

I think about what Sam must have thought about all the changes in his life. Sometimes he shared his feelings with us -- he was indignant that he had to spend the summers in the hospital, for example. He hated that he couldn't go swimming. Sometimes he was happy -- there were many things that brought him joy and laughter. But he was only 6...7...8 years old. It was hard to get a real sense of his feelings and ideas; he had limited vocabulary and experiences with which to share what he knew. I was waiting, I was imagining....I was always thinking about how we would talk about this time in his life, how it would impact him as a teenager, a young adult, a parent...I envisioned the conversations we would have at those stages in his life, and how he would want to frame his experiences as a child with cancer...I often would think about what it was going to be like to interpret his Bar Mitzvah Torah portion with him. Would it relate to his survivorship? Or would he, at that time, brush me off and tell me that it's not the most important thing in his life and he has much more important interests now? What would his college entrance essays say? Would he talk about the defining experience of a bone marrow transplant and his desire to cure cancer, or would he have new experiences that would make a more compelling essay? And what would he have told his life-partner, in those early conversations in the newness of love, about his childhood and the time he spent in treatment for leukemia? I was always thinking about how he would look back at this part of his life...hopeful that when he looked into the mirror, he would be proud of who he had become and what ordeals he had survived.

When we were making decisions that had impact on the whole family, such as the plan to enroll the kids in school in Milwaukee, I would use the image of a future Passover Seder in my mind. Not the meal or the Haggadah, the words we would say describing freedom, mind you. No, I had the image of our family-in-the-future sitting around, after the meal, drinking our coffee and nibbling on Pesadik brownies, my four children and God-willing, their partners, talking as their children (my grandchildren!) played together in the other room. And I would envision one of them saying, "remember those years of our lives when you had cancer, Sam?" And they would laugh and joke and tell stories and maybe Michael and I would exchange knowing glances, content in our lot that our children could recall these days with love and blessing, that only we, the parents, could truly recall the terror and pain that we felt as we shepherded our flock through those raging waters...that their memories were glazed over with the softness of memory and sweetened by each others' presence...and in my imagining, I would sigh with the peace of knowing we had been faced with so many terrible choices and we had come through to the other side into the promised land....

But that's all in the mirror-land now, isn't it? That alternate place that I imagined, the reality-that-could-have-been....it's like that life is still going on, somewhere, in some other-world...but we're not living it.

And here we are, left to sit at the Passover Seder without him, always knowing that there will be an empty chair at our table....oh, God-willing we will be having many conversations around the table with David and Yael and Solomon and their future partners, our grandchildren playing in the background....but we will always feel the presence of the forever-eight-year-old Sam, never knowing what he would have thought of whatever new and crazy things we're discussing. He's frozen for always in that one moment in time while the rest of us, despite my deepest heartfelt wishes, continue to make new memories and create new experiences....without him.

So I look in the mirror....and I wonder who is looking back at me....

November, 2006

May, 2011

January, 2010

SederSelfie - this year...

One year ago today....one of my favorite posts and videos....

All By Himself

My mind feels so foggy. I search it for memories, for stories, for reminders and glimpses of Sammy and the life we had.

Every so often I get a flash of inspired memory.

When I walked into the Soref Center at camp, I had a sudden reminder of a trip that Sammy and I took together. I think he was 3 or 4 years old, and I took him to camp for one night (it must have been a NFTY event). Just the two of us. It was so rare that he ever went anywhere without Yael, he was relatively mystified. I remember how excited he was to go to camp, and how much he chatted in the car for the whole two-hour drive.

But here's why this particular building held the memory for me:

Sam and I walked into our room, the first (and probably only) time he'd ever stayed in that building. There were two beds in the room, and he pointed to one: "That's mine," he said. Then he pointed to the other bed: "That's for David. And we'll put Yael's pack-and-play over there."

I giggled. "No," I remember saying to him. "Remember? It's just you and me. David and Yael are home with Daddy. That bed is yours and this bed is mine."

I recall his bewildered expression and I also recall that it only took a few minutes for him to quickly get used to the idea of being without his siblings for the night. Sam was almost never "by himself" without Yael or David and later Solly. For the most part, he liked it that way.

In the hospital, the nurses and care partners would say the same thing each time they exited Sam's room: "Can I get you anything?"

Sam would often answer, "Yes. My family."

Tonight I spent 20 minutes in the car with Solly and Yael. For most of the drive, we talked about Sammy. Solly said things like, "he's almost better. When he's better he will come home and we will jump on David to wake him up together." We talked about how much we all miss him.

I wiped my tears. I wanted to change the subject, but I also wanted to continue talking about him, feeling him in our midst.

Then Solly asked for "light-up-dragon earrings" when he "gets bigger."

Spell broken.
I'm sure Sammy would have appreciated Solly's transition too.

from June 2007 - Sammy with Yael

All by himself in the backseat headed up to the hospital for a checkup

One year ago today...April 13, 2013