Friday, October 24, 2014


Kids with cancer are in the news.
So much now.

Is it that I'm noticing more?
Is it that I'm moving in those pediatric cancer circles and it perpetuates itself?

I don't know.

Sometimes I weep. When 19-year-old Lauren Hill talks about her desire to play one last game (okay, and the sports reporter tears up at the end of this clip too) of basketball, when Devon Still chats with Ellen Degeneres about his daughter with neuroblastoma, I cry.

These are stories that have made the national news and while I weep, I am also grateful that they are bringing light to this, attention to this, awareness (there's that word again)....and hopefully action.

Because most of us aren't celebrities, and we're okay with that. But we want to tell our stories.

So I read Sabrina's blog and the words of JLK's mama and I see posts like this one from Mary Tyler Mom...and I cry then too.

You might tell me not to read those things. To stay away from them....

But I can't. These are my people, my sisters and brothers who walk these paths through this deep I can't walk away. We are a tribe.

And because I can't walk away, I can't turn my eyes, I keep looking forward.I keep sharing stories. It's not just my Sammy, although let me tell you, the Sammy-sized hole in my heart isn't any less painful. But I have a tribe.

I wish I didn't.

To help keep more kids and families out of our about a little extra pocket change over here at St Baldricks? Every day, research is making a difference.

Wednesday, October 15, 2014


I thought we had built a sukkah over our family.
A sukkah of protection.
I thought we did it all as right as we could.
Organic milk.
BPA-free sippy cups.
Five-point harnesses.
Regular well-child visits.
Regular dental cleaning.
We followed all the "rules."
We dotted all the i's and crossed all the t's.

I thought we had built a sukkah over our family.
A sukkah of (data-based) hope.

We flushed IV lines, and we read medical journals.
We washed our hands. We used bleach wipes.
We researched clinical trials and we asked questions.
We planned and we arranged, we orchestrated and we engaged.
We dotted i's and crossed t's....

I thought we had built a sukkah over our family.

I think that sukkah is still there, but we're huddled in the rain, wishing that its roof gave us more shelter. We're watching our decorations weep with ink and feeling the cold droplets on our heads.

I thought we had built a sukkah over our family, and we did.
It just wasn't the kind of sukkah I imagined.

All that stuff that I thought was so important....maybe it was, a little. We still drink organic milk. There are still five-point harnesses and visits to the dentist.

But I realize now that the sukkah we built was so much more.

It is a sukkah built on books and snuggles, on bedtime kisses and family outings. It was built on chaos and tickle fights and letting the kids jump on the couch (sorry, Mom) and leaning toward "yes" as often as possible. It was built on dessert at breakfast and licking the bowl and doing chores. It was built on gathering friends and holding onto them and making them important members of our family. It was built on an ever-widening circle of love.

We built a sukkah over our family and it seems to be holding us up.
I'm so glad that we did.

What? Doesn't everyone fence with their Torah yad and their tante/tutor? En garde!
First day of Sunday School

Friday, October 10, 2014


Our sukkah leans a little.
It feels like a metaphor.

In yoga, when you try to stand on one leg and balance, you wobble. One of my teachers once said, "embrace your wobble." Yep, that's our sukkah. Wobbly in so many ways.

Sukkot was really Sammy's favorite holiday. I think it was because he loved to be outdoors, and this holiday is all about that. I know he loved the fall, with its beautiful displays of nature's beauty, and I know that he really loved having people over and sharing his favorite sukkot menu with them (macaroni and cheese, if you're new around here).

I can only imagine what kind of crunchy-granola-earth-loving-sukkah-dweller Sam would have grown up to be....

Oh, how I miss his part in all of this.
Oh, how I miss having him here to be in our sukkah.
We all do.

It's traditional to welcome guests into the sukkah, not just real guests, but also imaginary ones.*
Solly does this all the time. He talks to Sammy "in my heart," he tells me.

"I told Sammy-in-my-heart that I want him to come back for my birthday."

I opened the sukkah decoration box and found artwork filled with Sammy's handprints.
A piece of him, in our sukkah.

Sukkot is all about our own vulnerability.
Our sukkah leans a little.
It wobbles.
And so do we.
Sukkot 2008 (me do it! I wanna go on the ladder!)
Sukkot 2009 -- note that he is wearing pajamas
Sukkot 2010 - "dwelling" by playing his Nintendo
Also 2010 - helping put up our indoor sukkah
2011 - they were ready for some dwelling
Sukkot 2012 - our last one together, although we didn't know it. In 2013 we didn't build a sukkah.
Eating mac and cheese at the 2012 sukkah party
Shaking lulav in the hospital Healing Garden in 2013 with Rabbi Steve....
300 days later and it doesn't seem any more real.
Where we were last year: Speed Bump
Where we were two years ago: One Day at a Time
Our Sukkah in 2010: Define Dwell
In 2009: Painting (this is the artwork that I found in the decoration box)

*Tradition teaches that we welcome not only actual guests but also ushpizin ("guests" in Aramaic) into our sukkah. These "imaginary friends" are our ancestors, seven patriarchs and matriarchs of the Jewish people. In recent years, many re-tellings of this ritual have encouraged bringing metaphorical guests of all kinds into the sukkah. Read more about ushpizin here.

Thursday, October 2, 2014


Do you remember when I fell and broke my nose?

A few weeks after that incident, one of the nurses told me a little story about the day. She said that, of course, they were concerned about me and my health. And I, of course, was far more concerned about Sam. She told me that they were all struck by the fact that when Sam woke up, his first words to me were about the beauty of the sunrise. (Something probably like, "hey mom, look at that beautiful sunrise!") And she laughed a little when she reminded me of my response, which wasn't "hey, Sam, check out my nose," but it was to also look at the sunrise (it was behind me) and agree with him, "yes, Sam, it is a beautiful sunrise."

He saw bugs and lizards, he noticed cloud formations and rainbows. He sought flowers and leaves, he splashed and he squished. Indoors or outdoors, he loved creatures of all shapes and sizes. Except spiders, he would remind me. "No spiders, mom." (Whew.)

Sam was always looking at the ground for cool stuff to collect. I've told you about how he liked to collect feathers. He also loved fall -- because he was always seeking the Perfect Leaf. There were usually quite a few of them, he didn't mind having more than one.

Last fall, we were out and about together and, as often happened, he handed me The Perfect Leaf. "Put it in your purse, mom," would be in his instruction, as though I would be able to protect the leaf and give it back to him at some later date when he could again admire it. So I stuck it into my wallet.

And then later on, a few days later, I opened my wallet to see it again:
I remember taking a picture of it, because I remember saying to myself: "THIS is what it is to be Sam's mom. To have leaves in my wallet..." and that's why I took the picture.

Now the leaves are turning again. Nature is stepping up for its annual fall beauty pageant. My leaf-loving child isn't here to see it. Last year we walked through the Heller Nature Center together at the end of October and admired leaves. This year....each leaf is a reminder that he's not here. Each beautiful turn of color tells me that time is marching on...and he's not here to check it out.

Walking thru the leaves last year. He did NOT want a pic on this day.
"Now is the time for turning," our High Holy Day prayerbook tells us.

Turning and turning...the world keeps on turning. Turning and turning....finding our way through a world without Sam....every leaf, every color, every rustle of breeze....he is there.
October 1, 2013 -- doing fall art at Ron Mac after discharge

Tuesday, September 30, 2014

You'll Live

"You'll live."

I say it all the time.

We're pretty laid back parents. At least we used to be.
A bump on the head?
Here's a kiss.
An owie?
Here's a ninja turtle bandaid. All better.
Stubbed your toe?
You'll live.

And then along came Cancer.
Bumps on heads were major.
Owies? Beyond major.
Toe stubbing? Could be life-threatening.

You'll live.

The words catch in my throat now.

I want to bite them back, I want to pull them out of the air where they hang, in big purple bubble letters, waiting for a child to respond....what if I don't?

You'll live.

Am I the same parent who walked into the Emergency Room on June 9, 2012? No, I am most certainly not. That bump on Solly's leg that I noticed in the bath the other day? I'm sure he just banged into the playground equipment. I'm sure of that. I keep telling myself that I'm sure. 

And yet that bump keeps me up at night...tumor?

I want so desperately to give my kids a world of safety and security, in which bumps are just bumps. So I run my fingers gently over the bump, waiting for it to go away...counting the minutes until it does or until I feel not-quite-so-crazy taking my kid to the doctor to have him tell me that it's just a bruise. A bump. Or maybe by the time I've made the appointment it will have faded into nothing. Does this hurt? I ask....

Sammy was so brave.
You want to know why he was brave? Because we told him over and over again that he was. We tried not to lie. I never said "It's going to be fine."

But I'm sure I said, "you'll live."

And that was a lie.
May 2008

February 2008

December 2009 -- he LOVED to lick the bowl. Raw eggs? You'll live.

Monday, September 22, 2014


What does an 8 year old leave behind?
Not so much.
Some art projects.
Some school work.
A few beloved toys and blankets.
And a dresser full of clothes.

Many many people sent Sam t-shirts that really helped to bring him joy. He had a great collection. A lot of Superman shirts, as you'd imagine, but also quite a few others with logos, sayings, and other fun things. He had so many favorites.

He also had a really world-class collection of pajama bottoms and sweatpants, the staples of a kid in the hospital. 

We have a very small house, and my kids share rooms. We've rotated and nearly everyone has shared with everyone else throughout their lives. We've switched beds and dressers, closets and bins. 

Sam's dresser has stood in the room that he shared with David, filled with his clothes. Solly figured out where they were, and he has regularly grabbed pajamas from Sammy's drawer. 

Solly needed a new dresser. He was using a very small bedside table as his dresser and it just wasn't big enough. In a quiet moment in the house, all alone, I walked into that room and opened Sam's dresser. I ran my hands over the clothes. I thought about how many times I had washed them, held them, folded them...and how many times I had hugged or kissed or touched Sammy while he was wearing those clothes. I knew that it didn't matter where these clothes were, and I knew that it would be both hard and beautiful to see them on my other children. And I knew that this dresser was probably the right one for Solly.

I started with Michael. "We need a dresser for Solly. We can either buy a new one or....empty out Sam's and give it to him. What do you think?' Michael considered and pointed out that it was just stuff. It wouldn't ever bring Sam back. So true and profoundly sad.

Then I went to David. "How do you feel if I move that dresser out of here?"
"Can I get a desk?" he asked.
Sigh. I guess he was ready.

Then I went to Yael and Solly. "We're going to move Sammy's dresser in here for Solly."
Yael: "Can I help you take all the clothes out?"
Solly: "Yay!"

Well... that went well.

Yael insisted on helping me.
She wanted to keep many of the clothes.
She wanted to wear them.
Some weren't the right size so we saved them in a bin for later.
Some were right for Solly now.

And then we moved the dresser.

Now she wears his pajamas and his shirts. Unlike Solly, who has been wearing them since Sam died, she hasn't wanted to. Now she wears them too.

I hug my children every day. All the time.
But when they wear Sam's clothes I hug them a little tighter. A little extra.
Like I'm giving him a hug too....

Yael's chosen outfit on the first day of Sunday School
I don't have a pic nearby but this is currently one of Solly's favorite shirts

Those are Sammy's pajama tops and bottoms. Those pants that Yael is wearing were one of his faves.

Solly's very favorite shirt. It says Sam in the corner. I don't even know who had it made for him...Sam loved it. Solly loves it.

Tuesday, September 16, 2014

Mirror of Erised

Yael and I are reading the first Harry Potter book.
It's my fourth time reading it.
To myself, to David, to Sam, and now to her.

I can't even begin to imagine how it's going to feel when she finishes the series, something that Sam did not get to do.

Tonight we read about the Mirror of Erised.

As Professor Dumbledore explains, it is a mirror that does not show one's reflection. Instead, "it shows us nothing more or less than the deepest, most desperate desire of our hearts."

Harry sees his parents, who died when he was a baby.

Yael doesn't understand the whole of it. I asked her what the mirror shows. "Dead people?" she says. Well, I try to say, it shows us what we really want the most in the world.

"What do you think the mirror would show us?" I ask her.


Yeah, I say. Sammy. 

But Professor Dumbledore continues his explanation: "However, this mirror will give us neither knowledge or truth. Men have wasted away before it, entranced by what they have seen, or been driven mad, not knowing if what it shows is real or even possible...

...It does not do to dwell on dreams and forget to live, remember that."

 And so we just keep reading....