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

The Littlest Bumps

The littlest things trigger memories. Today I walked a friend's daughter into afternoon kindergarten at Oak Terrace. We walked in, she stepped in line to walk down to her class, and as I was ready to leave her, I reached out and gave her a fist bump goodbye. And my breath caught as tears welled up when the image of five-year-old Sam in his blue winter coat flashed in my head as our knuckles touched.

Almost every day when I would drop Sammy off I would say goodbye with a fist bump. He rarely would want a hug from me in front of his friends. It was an easier, casual goodbye. It has been three years since I dropped off five-year-old Sam at afternoon kindergarten. It has only been four months since I kissed Sam's forehead and said my goodbyes. Everyday I see his pictures and remind him that I love him. I am not sure if I am saying it for him or for me, but I say it in my head.

This isn't the first time I've walked into school. For weeks after we returned from Milwaukee, after Sam's bone marrow transplant, Yael requested that I walk her in to school. The return transition was hardest on her. No, this was by far not my first time back at school, it was just the first time I had truly reenacted something I used to do all the time with Sammy at school. It felt familiar, it felt normal and the images reminded me why it was so familiar followed by the hints of tears of longing, sadness, and loss of a child lost way too soon.

I do my best to remember the good times and not castigate myself for the difficult times when Sammy and I were reduced to screaming at each other, both of us irrational, me more so than him since clearly he was just a three-year or four-year-old at those times and I was an adult worn all the way down. I look back at the intelligent, funny, playful young man he became as a five-, six- and seven-year-old. I look at how mature he seemed as he came to terms with his illness from six-and-a-half to eight years old. He just lived with it the best ways he knew how. I do my best never to ponder all that potential extinguished forever. I look back with gratitude at all the moments we did have, all the times filled with laughter, happiness and celebration.

Sammy is the child I truly spent the most time with of all my children so far. I was home full time with him from the time he was born until he was old enough for kindergarten. While he was in pre-school for some of that time, there were moments after Yael was born where it was easier to keep them both out of preschool. The three of us would run around with our own personalized schedule. The Children's Museum followed by Costco on Mondays, Pump It Up on Wednesdays, erev Shabbat dinner or services on Fridays, lazing about the house together most Shabbats. We played and grew and learned about each other as best we could.

Sammy is the child who inspired us to live where we've lived for the past eight years (since he would scream for 45 minutes each way when we drove to get David from pre-school from our old house). Sammy is one of the reasons we have so many friends and connections in Highwood and at Oak Terrace. Sammy is pretty much the reason Yael and Solly exist, because he was such an incredibly easy baby.

And even in death Sammy is such an inspiration to us all. He inspired over 60 rabbis in North America to shave their heads, raising over $600,000 for pediatric cancer research. He inspires sermons, articles, lectures, and awareness in hopes that his death was not in vain. He inspires me to be grateful every day for the blessings in my life and for the people who surround me with love and support. He inspires me to be a better person (although Solly works hard on spoiling that sometimes in our battles of who can be more irrational).

I am grateful each day for having had Sammy as such an important part of my life. I am sad each day for what I have lost. I grow stronger each day knowing he would expect it of me. But some days all it takes is a little bump for the tears to fall.

First Day of Kindergarten

Sam & Me at Green Lake, WI

(What you can't see me? I would be the drowning father being towed behind Sam for safety.)

Gift

You might not know this about me, but I'm a quilter. Supposedly, once a quilter, always a quilter. So I can say this about myself even though I haven't visited with my sewing machine in a few years. Each year for the last 11, I've served as faculty (and participant) in the Devorah Quilting Kallah at OSRUI, one of my favorite places. Last year, it fell about 3 weeks after Sammy's relapse, but since camp is only about 35 minutes from the hospital, I was able to go up for a little bit of Shabbat. This year I'm back, even though sewing isn't on my to-do list right now. I'm back amongst a community in retreat, with our own rituals and practices. A group of women who have, in many ways, watched my family grow up. 

In 2005, I was pregnant with Sammy at the retreat, and in 2006, he was not only our first baby to attend (I've since brought Yael and Solly, obviously), but also our first male participant. He spent most of the time hanging out on a quilt (not surprising) on the floor near my sewing station and while it was not his first time at camp, it was a milestone nevertheless. It was during this retreat that he learned to roll over, but luckily he didn't get really good at it while up at camp, or it would have made things a tad trickier. 

It's not my first time back at camp since Sammy died. 

I'm grateful that the first time I came here was with Michael.

This is different. Camp is, of course, different. It was snow-covered and colleague-filled back then.

Today it smells like spring and the sky is blue and the air is very quiet and filled with the purposeful energy of our retreat.

And Sammy is so very present and full in my mind. 

As I prepared to come up to camp, I looked through my pictures and was disappointed to see that I didn't have any of Sam at the retreat in 2006. And when I arrived here, one of the other participants handed me an envelope containing these:

I could not have been more grateful to her for these pictures, which I didn't have. With all the photos I have of Sammy, with all the chronicling that I've done and continue to do, it's hard to believe that there are events and occasions that I didn't photograph. But it's true, and I now find myself lamenting these moments. And angry. So angry that I need to care that I don't have a picture of Sammy from a  particular date in 2006. So heartbroken that because I will never ever ever take another picture of my sweet boy, I need to hold close every single picture I have, every single moment I remember.

I have resisted telling you how to behave around grieving parents, or giving lists of instructions. So many people have done that with such grace and presence. But the gifts of these photographs, at this place and time, knowing that before she came here, she too thought about my Sammy...oh, it was so heart-filling, so loving, such a blessing. I am so thankful.

In the Passover Aisle

The Yahrzeit candles, which we light at Yizkor for each holiday, happened to be right next to the macaroons.

I have a feeling that, had they been in separate locations, I would have just cried twice in the grocery store.

This way, it was one-stop shopping and crying. Convenient....

Solly didn't notice.
Yael didn't notice.

In fact, she noticed the macaroons with great excitement, and I wiped my tears as I helped her pick out the chocolate ones.

"I love these!" she said. 

"You know who else loved these?" I said back. 

"Sammy," we both agreed. 

And so it goes...

2012

2011

2010

Holiday Prep

Passover takes a lot of preparation.
Menu planning, cooking, shopping.

I couldn't find my Passover folder.
It wasn't in the Passover box.

Then I thought back to the end of last Passover, when everything was hastily broken down as we....broke down.

And then I was able to find my folder shoved onto a high shelf, where I had dumped it in my attempt to pretend that it wasn't a holiday any more....

When I sent the email explaining how many members of my family would attend the synagogue seder, I started by typing, "the six of us," and then I had to delete those words...

I stared at the folder as I began to consider this year's menus.
I stared at it and I wondered how I would ever celebrate this holiday again...

Then I took a deep breath and wrote out some menus.

My house is unprepared.
My head is unprepared.
My heart is unprepared.

But I've still got a week to go, right?

In October of 2012, Sammy was craving Passover macaroons. Jody came through with a call to Manischewitz....Passover in October?

April, 2012 - a Passover outing. I remember that we brought a box of matzah crackers to snack on at this park.

Bare

Today was the first day I was alone with my shaved head.

By alone, I mean without my amazing colleagues around me. It helped, for example, when we went to breakfast two days after the shave, to be at the table with four other shavees (three of them female). It helped that we were on a post-convention high, and it helped that our waiter was a stand-up comic who followed the directions on one rabbi's button: "ask me why I'm bald." When he did, we told him the story...and it helped that I could say Sam's name in the presence of those who knew him. He was phenomenal, by the way, and even offered half of his tip back to us as a donation. (Make sure you patronize Eggy's and say hi to Kolin for us.)

Me and Kolin at Eggy's

By alone, I mean that for the last four days, I was surrounded by so many people who knew my story. I was surrounded by people who held my hand and didn't even have to ask before they gave my stubbly noggin a kiss.

Some of my favorite bald rabbis (thanks to Julie Pelc Adler for the picture)

So today was the first day I was alone.
I took Solly and Yael to Costco.
Bareheaded. (Well, inside. It's still very cold here!)

I got a few odd looks.
A few that felt like sympathy.
A few that felt like empathy.
I felt exposed and a little raw.

But no one asked me about my shaved head.
And for today that felt okay.

Then I left the kids at home and ran to the grocery store.
All by myself.

I left my warm hat on in the store.
I felt exposed even with my hat on my head.
I felt a little like I was venturing out into the world for the first time.

I've heard that amputees often feel "phantom pain" in their missing limb.
I'm feeling "phantom hair" as I move my head around.

It mirrors the "phantom child" feeling I have.
The sense that I should divide things into four portions.
The sudden worry that I'm coming up one short.

At the convention, we laughed and we cried, we joked and we teased.
Now that I'm home, reality feels so big.

People keep asking me what Sammy would have thought of all of this.
I so dearly wish I could ask him.

One year ago today

P.S. You can still donate to our St. Baldricks campaign through the end of 2014.

Dayenu

If you all had supported and loved us through emails and calls and texts and messages....dayenu. 

If you all had sent Sammy packages and cards and gifts and tshirts and videos and showed him how the world cared about him....dayenu. 

If you all had helped us beg and pray and plead and wish for a different ending for this journey....dayenu. 

If you all had stood with us as we buried our child and kissed our living children and strengthened us every moment of every day....dayenu. 

If you all had raised over half a million dollars for St Baldricks in memory of Sam, in honor of so many, with the hope of a future without the pain and heartbreak that our family and friends have felt....dayenu. 

If so many of you had agreed to shave your heads with us, to stand with us, to help us laugh and cry and pray through this experience....dayenu. 

If only Sammy had been here to see it....

Dayenu = it would have been enough. This is a liturgical poem we say at the Passover Seder extolling God's miracles. 

April 1

Today is April 1.

It's the anniversary of my Bat Mitzvah, a moment of personal transformation.
It's Rosh Chodesh Nisan, a new month dawns.

One year ago today, we brought Sam to the hospital and signed the consents for harsh chemotherapy. Only three days earlier we had learned of his relapse.
I signed those papers...tears flowing.
One year ago today we began the second chapter of the odyssey that ultimately ended with his death.

109 days ago, we held him for the last time.
107 days ago, we placed his body into the earth.

April 1, 2013

Today I shave my head.
Today my outside will begin to match the pain I feel on the inside.

Today, like every day, will never be the same.

To donate to the 36 Rabbis Shave for the Brave, click here.