Days until Shorn

A piece of me is crumbled inside like a building gutted in a fire. I can almost smell the charred scent of the ruins. I find myself walking around the wreckage looking for pieces of what was. In the charred ruins, like new growth after a forest fire, I find images and memories of days of laughter and revelry. I then turn around and see all the rest of my existence whole and intact, children that need to be dressed, fed and prepared for school in the morning, games that need to be played, piano to be practiced, movies to watch. All the pieces of a life that Sam's death left intact. All these pieces of life remind me why I keep breathing, why I carry on and am capable of doing what needs to be done.

But the smoke still fills my nostrils as memories waft around my mind, making it hard to breathe. Pictures, memories, reading Phyllis's writings brings tears streaming down my cheeks and I let them fall. I allow myself to feel all the reality of my pain because I know how unhealthy the alternative is for me mentally and physically. So I walk through the hole in my soul and look at all the memories and pictures. I look at all the things that currently make me cry knowing someday they will make me cry less. Someday I will just cherish them for what they are, the precious gems Sammy left me to remind me how good life was and how good it can be.

Now I prepare to spend a week with all my rabbis. A week with all the rabbis I call friend-family, who have known me since my youth, since graduate school, since Sammy was born, since Sammy got sick, since Sammy died. I'm prepared to have my head shaved with nearly a Sanhedrin of rabbis (Great Rabbinic court of 71 of the wisest rabbis during the Second Temple Period). My work raising funds for pediatric cancer research stands completed for the moment before I begin fundraising for next week, next month, next year. We scratched the surface so well this time. Maybe next time we aim for a million dollars or even a daring $1.8 million. We have the will, we have the way, we have communities who believe in what we believe that no child or family should ever experience what we and so many like us have experienced. 

It is time for my hair to be gone. It is time to become invisible again, my new "normal" self, a fitting moment to remove the visible sign of my grief in such a public manner. 

People ask how I will handle it. I respond that my walls are strong when I need them to be. They are always close and at hand when I need something to press against to keep myself standing. I will also be surrounded by a wall of love and a sea of open arms and hearts. As a couple we will be embraced beyond our expectations. As a community we will embrace each other, pray together and heal together towards a future where pain such as this is but a historical memory. May Sammy's memory strengthen the glue that binds us as one and fuel our determination to eradicate Pediatric Cancer in our lifetimes of mending the world and making it a better place. 

March 30, 2014

Summer 2012

Even bald, Sammy kept his sense of joy and humor as many days as he could. 

A true inspiration.

Many Calendars

A sweet friend reflected to me this week how complicated it can be to have two calendars in which to grieve, the Gregorian calendar and the Jewish one. I've been thinking about this a lot, and I'm realizing it's even more than that.

This week, on our "regular" calendar, is the week of Sam's relapse. 

One year ago, on March 26, 2013, Sam announced that his legs hurt....and on March 29, I took him to the clinic. 

I so vividly remember the way that I felt when the oncologists walked into the room with the blood results. I didn't even need to hear the words. Relapse. It was one year ago today.

March 26, 2013, however, was not just any date on the calendar. On the Hebrew calendar, it was the second night of Passover. 

And so I'm standing in between two worlds. It's not Passover yet, and I'm feeling the weight of that day. And I'll feel it again, I'm sure, in a little over two weeks, when Passover rolls around on the calendar.

The funeral homes give out a little calendar of dates, future Yahrzeit (anniversary of death) dates for your "beloved deceased." Because of the date of Sam's death, and because of this year's leap year situation, it happens that in 2014, we don't observe his Yahrzeit at all, but twice in 2015....and that's if we only observe his Yahrzeit by the Hebrew calendar...which we can't. We live in two worlds...and it's all complicated.

But remember how I said it is even more than just these two calendars? It is so much more.

There's the cancer calendar. The last two years are seared into my mind, and each day is its own mini-anniversary. I can't help but track...where were we at this time last year? The year before? 

There's the calendar of life we're living now. Each moment is another one without Sam. Each day is another in the row of days without him. And each day has its usual stuff -- school, activities, breakfasts, lunches, and dinners. The days are busy, we move forward through the everyday and the ordinary, the holy and the precious. New memories created on days that hold painful reminders. 

And then there's the calendar that I try so hard not to dwell upon: the would-have-been calendar. Where would Sam have been right now? What would he be doing? Would he be taller? Would his hair be curly? He would have mastered the whole Hebrew alphabet by now, and he'd be reading prayers and phrases. What would his tree pose look like? Would he be chomping at the bit, waiting for the cold-and-flu season to finally end so he could go back to school? What would he say to each of Solly's new tricks? How would he feel about Yael's current twin obsessions with Barbies and playing "school"? Would we have been able to take him to see David's school play? With each new milestone in our family, I wonder...

So many dates on so many calendars.

So many memories flooding every day.

Some days they hit me like a crashing wall of water. Other days the waves are more gentle. 

But there isn't a day, a date, without them.

March 26, 2013

March 27, 2012

March, 2011 (one of my all-time favorite pictures)

March, 2010 (see the pajamas?!)

March, 2009 (also in pajamas)

March, 2008 (more pajamas!)

March, 2007

March, 2006

It's been 103 days

I'm picking up a deck of cards that's strewn all over the floor.
Solly: Mommy, I didn't do that.
Me: Hmm....so who did?
Solly: Sammy.

It's been 103 days and Solly has turned Sammy into his imaginary friend. He still yells at us to "bring Sam here," especially when he's overtired.

It's been 103 days. Solly has discovered Sammy's stash of pajamas:

It's been 103 days and one of Sammy's socks showed up in the clean laundry basket today:

It's been 103 days and I cry in the car.

It's been 103 days and kids with cancer are in the news.

It's been 103 days and I'm still counting days.

It's been 103 days and I wonder sometimes if it was all just a dream....

The famous Crocs and Black Socks combo -- at RonMac

I remember wanting this picture of his Crocs and Socks but he was looking back saying "don't take that picture, mom!"

Sponge Bob pj's in his last few days...with mismatched socks...oh, how I miss this boy

My Little Storyteller

Yael went to a playdate on Thursday (no school) and she came home with a book that she'd created with her friend.

"I wrote the words and she illustrated it," my daughter told me.

"But I told her what to draw," she said.

"Sam" is the simple title of the book. ("We wanted to call it 'About Sam Sommer' but 'Sam' seemed easier," she said.)

I'm going to let it speak for itself (with a little translation under each photo, in case you don't read First Grade) and probably not comment on how much like her mother she is.

Here is how Sam got sick

One day Sam and my mom and dad took Sam to the hospital.
I went to the hospital almost every day.

The doctor said that Sam had to stay at the hospital for 4 summers.
(oh, Yaelie. It only felt like four summers. It felt like forever.)

I was sad when I found out that he had to stay at the hospital.
We stayed at RMH (Ronald McDonald House) for one summer.

Sam was my favorite brother. I miss him so much. (the illustration is, she told me, of his funeral)
On the 14th I never stopped crying.

One morning when I got up I asked my mom where is the nurse and Sam. She said that he was dead.

Then Rabbi Steve came and talked to us.
Then we had a funeral. The end.

P.S. In case you're wondering (I know you are), she was very enthusiastic about my sharing all of this with all of you, and she read over my shoulder as I posted, to ensure that she was quoted accurately.

So many people ask me how the kids are doing. They have lots of people-who-aren't-their-parents watching over them and they seem to be okay. This is just one glimpse into Yael's mind...

On the Front Steps

Sometimes I can see a landmine coming.
I can prepare.
I know something is going to be hard.
Attending a convention, for example.
Seeing people I've not seen since before Sam died.

But other times I am blindsided.
Today was one of those.

Parent-teacher conferences.

I didn't even realize that I had avoided going to the elementary school since Sam died.
It hit me as I walked up the front steps of the school.
Like a ton of bricks.

I have tried so hard to avoid being preachy, to give the "enjoy what you have" speeches.
I've thought so much about all that I have, and all that I miss.
But I would give anything...everything...to have had one more parent-teacher conference on my docket.

Kindergarten

Family tradition - first day of school - do you fit in your locker?

First grade

Sam and George, his Monkey in My Chair

First day of First Grade

First day of Second Grade...in the hospital with Miss T.

More Counting

This year was a Jewish leap year, and so we added a whole month to our calendar. Because of that, this year there were almost exactly 100 days between the last day of Chanukah and the day of Purim.

Two holidays on which we talk about miracles.
Two holidays that are often compared, with latkes and hamantaschen at the center of many a debate. (I'm a latke girl myself, even though I do love hamantaschen. Oh, who am I kidding? I can't decide.)

Two holidays that are beloved by Jewish children everywhere. Including mine.

One hundred days ago, on the last day of Chanukah, was day +100, one hundred days post-transplant. Transplant was all about counting days. So, yes, Purim would have begun as we counted Day +200 for Sammy's transplant. I can only imagine how we would have celebrated this milestone. Would his immune system have been strong enough for him to don a costume and come to the Purim Carnival? How many hamantaschen would he have folded and pinched and filled? Would we have created a group costume, something to link the fearsome foursome? (How much convincing would it have taken everyone to go along with being all the characters in Frozen? Who would have been the reindeer?) Would the turtle backpack still be a part of his daily life or would he be free of permanent IVs at this point? Would we have brought plates of hamantaschen to the clinic to share with our friends, inducting many of them, probably for the first time, into the ways of chocolate-nutella-filled-triangular pastries?

So many questions....what would have been....

If you haven't noticed, by nature, I count things. When Solomon was born, I posted a daily picture of him, counting his life in days. It was silly and fun, and I would joke that on each subsequent year,  I would actually post his age in days rather than years. (He's 1,196 days old, by the way.) But that counting fell away eventually, and I had to look up that number today instead of knowing...I once had a conversation with a BMT parent-friend about how long we would count their days of transplant. What would Day +10,000 look like, we wanted to know? How old would our children be...wait, how old would we be?! We imagined, we laughed, we may have shed a few tears of gratitude at that moment.

Will I ever stop counting the days?
Psalm 90 tells us: Teach us to number our days, that we may gain a heart of wisdom. (vs 12)
I probably won't stop counting.
I'm waiting for the wisdom to catch up....

BMT +100

Sammy at Chanukah, about 100 days ago

Solly at 100 days....this is pretty much exactly what Sam looked like too. I just don't have a daily picture to prove it.

This is Day 119 for Solly and Day 1980 for Sammy. 

June, 2008 -- practicing for Purim

Footprints in the Snow

I officiated my first funeral yesterday for a dear friend who died suddenly on Monday. It was my first time as a rabbi, and not as a parent, returning to the cemetary where Sammy is buried. I was comforted to see that my friend was being interred only a 1000 feet east of where Sammy is buried. I thought to myself, "At least my friend has Sammy as a neighbor."

I held myself together and calmly read the liturgy and the mourner's kaddish. I held my walls as firmly in place as I could, only wavering at two points during the mourner's kaddish. I gave the family hugs and watched them leave, slowly one by one, after the burial. Then I drove west, looking to see if I could find Sammy's grave on my own. It took a moment and one turn around (there was a lot of snow covering up the landmarks I know to look for). I followed the footsteps in the snow of those who had come to see their loved ones before me. I stood at Sammy's grave and cried my eyes out wanting to scream at the world.

Sammy was my rock. I was Sammy's person. So many times when I had to leave to go to work he would so "No Daddy, don't go." And I hated leaving him even if I needed the time away. I always came back to him and he always came back to me no matter what, even if we had an awful day together not getting along. At the end of each day we always forgave each other and found our way to lying next to each other just before bedtime, side by side in the dark. Sammy always asked me a thousand questions. He was always curious about this and that. He always wanted to know more. I hope he has all his answers now. He would love that.

These days I feel like I only have one question, "Why?"

Ninety

Sam at 90 days old:

Sam, 90 days before he died:

A song came through my playlist today. It's a beautiful and sad song: Clouds by Zach Sobiech. Zach wrote it shortly before he died of pediatric cancer in May of 2013. When he died, I cried, just like I do whenever I hear of another child taken by the plague of cancer. But I digress.

The song came on today in the car, and Solly was with me. I don't think he's ever heard the song before. As it began and a few bars played, he said,

"This song has me and Sammy in it."

How did he know?!

Sammy is always on his mind.
Sammy is always on my mind.
He's on everyone's mind in our family.
With every moment, with every song, he's on our minds.

Ninety days have passed.
A blink.
And an eternity.

Topsy-Turvy

It's almost Purim.
Purim is a topsy-turvy holiday -- we're supposed to be silly. Things are supposed to be upside-down.
And it's supposed to be fun.

We make hamantaschen...every year.

My heart's not in it. Our first real holiday without Sammy.

But I am going through the motions.
I've ordered Purim costumes.
I've made hamantaschen.
Because the kids demanded it.
How could I say no?

Fake it til you make it, right?

It all feels so topsy-turvy.

Sammy LOVED Purim. He loved making hamantaschen. He loved dressing up in costumes. He loved the carnival.

It all feels more topsy-turvy than ever.

Last year...

Making hamantaschen last year

2012 - an angry pig from Angry Birds

Purim 2010, a dragon costume (Solly's about to grow into this one)

From 2011 -- he couldn't decide what to be so he dug through all the costumes and picked this one. I think it is Boba Fett?

2010, delivering mishloach manot (food gifts)

2009 - horsehead + pajamas (Yael is a fairy)

2009 - eating hamantaschen

2009 - making hamantaschen!

2008 - a little bumblebee

Blurry

I went to a yoga class the other day.
And everything just felt....wrong.

I was feeling cranky beforehand.
I was feeling unbalanced.

And then nothing went quite right.
I forgot my headband.
I forgot my water bottle.
I even forgot my mat!

My muscles felt stiff and tight.
Tears flowed.
My shoulder ached.
I was achy and cranky and sweaty and grumpy and crabby and....

I tried. I really did. I closed my eyes. I breathed slowly and deeply. I sank a little deeper into each pose. I just couldn't get it to feel right. I couldn't get my footing set. I couldn't quiet my mind.

A balance pose...one side and I finally felt it....a little sense of calm started to find its way in.
And then, bam. The second side and I couldn't make it work again. That sense of calm was lost. By the time we settled into savasana, the final resting pose, I was restless and frustrated. I couldn't wait to get out of there. 

Some days are just like that. 

I'm feeling off-kilter. It's totally reasonable, obviously.
I'm feeling a little bit blurry.
I'm busy and yet nothing seems to get done.
Sometimes not even yoga can help me out of it.
Sometimes the time slips away...wasn't I just doing something else? 
I still flit from thought to thought...sometimes I can put a few coherent ideas together.
Sometimes things seem fuzzy.

And then I fold laundry, read "Goodnight Construction Site," listen to Bar Mitzvah students and make smoothies and cheese toasts. Good days....bad days....push through the vinyasa....

Sometimes it's just the tears that make things blurry...

12/09 Even the blurry outtake pictures....I'm so glad I kept them.

7/25/12 There was a clearer shot taken after this one...