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.