Birthdays

In our family November has always been birthday month. First there is my birthday, then there is...and that is where I stop. There is a gap now.

Just last year David, Sam and I all celebrated our birthdays in the same month together for the last time. First me, then Sam turned 8, then David turned 12. For eight incredible years the Sommer boys relished the month of November and all the potential it held for each of us as we celebrated our birthdays.

Now as November begins, I continue aging (backwards) this weekend, David becomes a Bar Mitzvah in two weeks...and Sam...Sam stays eternally 8. There is a gap that shouldn't be there. There is a birthday missing. Sam is missing. I feel the loss of all that could have been. I am missing all the possible futures that ended when Sam died. I feel the gap in the birthdays that will always be there as November 8th comes and goes without our growing boy there to open presents, blow out the candles (9+1) and laugh his joyous laugh.

I don't hate birthdays now.
I just hate that I can't celebrate Sammy's birthday with him here.

first birthday

2nd birthday

3rd birthday

4th birthday

5th birthday

6th birthday

7th birthday -- in remission

8th birthday -- last year

Dad and Sam on Sammy's 7th birthday

Block

In my yoga class this morning, the teacher asked us to hold a block between our legs, and then do a few poses that we would ordinarily do without it. A few chair poses, a sun salutation, and a few other things. It felt unusual. It felt difficult. It felt challenging.

It felt a lot like walking around every day, missing Sammy.

I've heard it described as a pebble in your shoe or a brick in your pocket.
Grief.

It's a constant awareness of something that's just-not-quite-right. Something off. Something that weighs me down a little, or makes it hard to execute a "move" that I would have, once upon a time, been able to do with a little bit more grace. It's knowing that no matter what I do, it's not the same. It's not the way it used to be.

After a while, we put the blocks down. The next move felt lighter, different. But it was still changed. The block had changed how I did the pose. Just that short time with a new thought pattern...and I was different.

I can't imagine ever putting this down. I can't imagine the day when the ache won't be so big.
And I can't even imagine that I will ever be fully the same. I will always be different, changed, adjusted....I might even look the same on the outside.

But the block is always there.

Oh, Sammy. I miss you so much.

317 days since we kissed him goodbye
One year ago, we carved pumpkins and Sammy felt well.
Two years ago, we eye-bombed the hospital, in what became our signature move.
Continuing the fight against pediatric cancer every day. 

Carving pumpkins last year, October 2013

In the hospital, October, 2012

Carving at pumpkin fest in 2011

October 2011

October 2009, making a face "like a pumpkin," he said

Tribe

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 valley....so 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 tribe...how about a little extra pocket change over here at St Baldricks? Every day, research is making a difference.

Building

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.
Back-to-sleep.
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

2012

Wobble

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.

Leaves

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