Practice

"Yoga is a practice, not a performance."

Substitute "grief" for yoga and I think you've got a truth...

I'm practicing.
Every day.
Some days I fall down. I lose my balance and I can't focus.
I totally collapse and cry and want to stay in bed.
Some days I feel as though I've gotten it right.
I stand up and I move and I bless the moment.
Practice...every day is different, every day is a work in progress.

Always practicing...always working.

I'm grateful when I think of Sam and I'm led to a warm sweet place...instead of intense pain and sadness. It's brief sometimes, but I know it's there.

I'm practicing to get there.

Pieces

I hab a code in by dose.

It's the first time I've had a cold in almost two years.

It's the first time I've been "sick" since before Sam was diagnosed with cancer.

We just couldn't be sick.

And we just weren't. It was pretty remarkable, actually, how we avoided getting sick throughout all of Sam's treatments. It was all that hand washing, maybe. I think we just willed the germs to stay away so that we wouldn't have to avoid being with Sammy. 

Either way, I feel a little bit crummy.

Remember that cough that Solly has? Yep...he passed those germs onto me.

It's so strange to have germs around...and not stress about anyone's ANC.

(Before you all get all chicken-soupy on me, don't worry, I'm taking good care of myself with tea and meds and water and pick-your-favorite-remedy....)

The reality of reality is starting to settle on me with a great weight.

I catch my breath when I realize that this will never be "over."

There is no "over."

We'll never not have him.

We'll never not be without him.

We'll never not miss him.

It's only been 74 days. It feels like forever is stretching in front of me.

I have to stop myself from thinking about one year, two years, ten years down the road.
My mind starts to tumble, pell-mell, down into that spiral of what ten years from now will look like....and I have to pull back and forcibly stop myself from thinking like that.

I don't know how to imagine it...

I don't want it to be like today.

But I want it to be exactly like today.

Either way, I know it will be whatever it is.

And so I stop thinking about that future...and I just think about today.

In my yoga practice today, I thought about this. At the beginning of class, it stretches out...oh so long. Can I make it through this class today? I'm tired, my nose is stuffed up, my head hurts....okay, I'll just do this one pose. And then the next. And the next...one at a time...until I've made it through...

One day at a time....I can only think about missing him one day at a time.

Today Yael and I did a puzzle. It was missing a piece.

Just like us.

Then we played Stack the States. It was one of Sammy's favorites.

She loves playing it. I love it because it reminds me of Sam.

I told her that.

I hope that helps her love it more.

August 2008

October 2008

January 2009

April 2009

Would Have Been

It's been a long, hard week.

I've been sad and tired and worn out.
And yet I've put on my big girl shoes and stood up tall.
Sometimes that's just what you've gotta do, right?

I've thought so much this week about the things that Sammy will never do.
The things that we will never do with him.
The ways that we will remember him.
And the ways that we will not.

Our incredibly strong and kind friend Emma Rose (and her family) served a dinner on the HOT Unit last Friday night, in Sammy's memory.

This was the fundraising campaign that I set up for his birthday, in honor of that incredible milestone. Things seemed so hopeful at that moment. We had donuts for breakfast, we planned parties and cakes and celebrations...thinking back to his birthday, it seems like an entire lifetime ago.

Emma did a wonderful job of creating something meaningful and beautiful in memory of our sassy Sam. I'm glad that people said his name and remembered him. I'm glad that a really good thing was done, a really good thing that brought smiles and laughter and happiness...I'm glad that Sam's name can be associated with things that bring joy.

Tomorrow...Saturday...would have been Day +180 for Sammy's bone marrow transplant.

One hundred and eighty days since Sam met his new marrow.
It seemed like a day filled with light and hope, with excitement for the future and for all the potential that it held.

I wanted so badly to celebrate these milestones with him.
Imagine what we could have done with 180 days...
I wake up each morning and wonder what we would be doing today.
Would we be going to clinic?
Would we be negotiating about meds and IV lines and would we be worrying about the flu season?
Would Solly's cough that is keeping me up at night be a ticket for him to sleep at someone else's house?
Which old movies would we have introduced to Sam?
Which favorite books would we have read?
Would I be busily convincing the four of them to choose a foursome costume for Purim?

As I braid my challah with its forever-six strands and prepare for this Shabbat, I wonder what we would have done to celebrate 180 days. Fundraising? A party? A quiet little celebration with carrot cake? A visit to deliver gifts to the Ronald McDonald House? A snowy walk in the woods? Baking cookies?

Instead...we remember him.
Will I ever stop thinking about what would have been....?

November 2010

December, 2010

February, 2011

September, 2013

Taking Pictures

In the last 66 days, I have avoided taking pictures of the three kids.

I've taken a lot of pictures (not quite as many as usual, perhaps) -- pictures of Solly, or Solly and Yael, or Yael and David, or David and Yael...okay, you get the idea. Many configurations.

But no pictures where I intentionally put David, Yael and Solomon together and said, "smile for mama's camera." Until Sunday.

I wasn't sure how it would feel...it's not the first time I've taken a picture of these three without Sammy.

April, 2013

May, 2013 - visiting at the hospital

December, 2013 - at Disney World

And it's not the first time I've taken pictures of only three kids, obviously. Once upon a time, Solly was just a twinkle in our eyes....and we had three kids then.

December, 2008 - check out the pacifiers!

May, 2009

April, 2010 - on the Zoo Train in Milwaukee

But it was the first time since he died....and I know there will be so many more pictures. I'm not going to stop taking photos, of course. I can't. I wouldn't. I won't. It's not me.

But a tiny part of me wants to....and yet I know that's not the answer. I have to keep taking pictures, I have to keep letting life go on....

Those new pictures will always look a little empty to me, though.

Sammy is survived by his siblings, David, Yael, and Solomon.

Does it help if I do this...?

 Just a little. It really does.

Birthday

It's not the first family birthday since Sammy died.
That dubious honor was my own.
But it's the first kid.
Yael's birthday was today, and her party is tomorrow.

Seven.
She's seven.

Sammy turned seven right after his first set of treatment concluded, after he was declared "in remission" and his central line was removed a week after his seventh birthday.

Sammy's 7th birthday

 It's every little sibling's dream to "catch up" to their big sib, right?

How can it be that eventually...she will, in fact, pass him up?!
Forever 8. He's forever 8.

She's doing quite well. Yael is her own little person, so full of life and so full of joy.
She misses Sam. She talks about him all the time. And sometimes she doesn't.

She included him in her math homework the other day:
Draw a picture of your family from tallest to shortest.
"Can I put Sammy in?"

6 personas en mi familia (with a heart) - six people in my family

I was so blindsided by the simplicity of the question -- that I just answered "of course" without even so much as bursting into tears. Upon later reflection, I was so glad that I didn't cry. If I cry every time she mentions his name or asks me about him....I'm sure she will eventually stop asking, stop talking. And oh, how I want her to talk about him. How I love to hear his name on her lips, how I love to think about the ways that she remembers him. They were so inseparable, they were such a little team.

during Sam's BMT hospitalization

And he pulled away from her first. Almost like he couldn't imagine how life would go on without their partnership, almost like he didn't know how to say goodbye....he definitely pulled away from her. I don't think she fully realized it (what six-year-old would?) and oh....how hard this has been.

Today...I couldn't stop thinking about him. How desperately I just wish he was here.
To be annoyed by her birthday. To be irritated that she is the center of attention.
That it's not his birthday.
Even that, I miss.

October 2010

June, 2010 "we're cooling off our tushies!"

March, 2010 - pajamas, of course

February, 2011

Sixty

Sometimes I think it's all just a bad dream.

Really.

I wake up in the morning and wonder if it's really true.
Is Sam really gone? It's so hard to believe, to hold onto, to comprehend...he's just not coming back.
I'm trying to wrap my brain around the idea that I will never again take a photograph with his face amongst the others.
I will really and truly never kiss his little head again or argue over the merits of one kind of macaroni and cheese versus another.
He will never again weigh in on a movie or read another book.
He won't make snarky comments to his doctors and nurses or find another bug in the backyard.

And sometimes I almost feel as though his whole life was a fleeting dream.
Was he really here?
It was so brief, so short.
He didn't do so many things.
He never even went to second grade...it's like he just wasn't there.
So much of life, just....unlived.
Maybe I was just dreaming his life...how do I hold onto it and remember it and pin it down into something tangible....

Sixty days have gone by.
I don't feel much more settled or stable than I did 30 days ago.
It seems like it was just yesterday...and it feels like forever.

Sam at about 60 days old

Another one - about 60 days old

60 days before he died, reading an optical illusion book that made him throw up.

We did a lot of reading 60 days before he died. Hey, that book he is reading, you can buy it! Proceeds go to the Go Bo Foundation, in memory of our friend Bo and supporting the work of the MACC Fund.

Just Like Sam

Isn't it always the case that little brothers want to be like their big brothers?

I remember when Sammy wanted to be just like David...which was pretty much always.

But especially when it came to David's stuff.

Like the video game controllers....David would hand him one without the batteries so he could "play along."

September 2007 -- Sam was nearly 3 years old.

Yes, Guitar Hero was big in our house in 2007. Sam obviously couldn't do it but he definitely wanted to try!

Solly found Sammy's shoes the other day. The ones I hadn't been able to put away. The ones I bought for him at Mayfair Mall in October. The ones that light up. The ones he loved.
Solly insisted on wearing them. "Sammy's light-up shoes," he calls them.

Oh, right, and did I mention that he also wanted to wear an Ironman costume?

And the backpack. Oh, the turtle backpack. "Just like Sammy," he says.

I'm pretty sure that was Sammy's hat too.

"When Sammy gets better, we're going to go swimming," he tells me.

Oh, Solly.
I so wish that were true.

And secretly? I think I'm glad that he talks about Sam as though he might just walk in the door at any moment. I definitely find myself wondering where he is, why I'm coming up short in counting, calling out a series of names...David, Sam, Yael, Solly...so when Solly talks about him like that...it's a little stab in my heart, but it also feels right. So I let him.... 

August, 2007

May, 2007

Remnants

I was packing my bag for a trip.
Before I could pack, I had to unpack my backpack.
I haven't really used it since my last trip to the hospital.
It was my hospital backpack.

I emptied out:
a change of clothes for Sammy
a chapter book we were reading together
a piece of paper with his lab results from a November 26 (boy, his WBC was high and his liver levels were terrible)
two sheets of tegaderm, a sticky clear film we used for PICC and CVL dressing repairs
a "be brave" robot-tile that Sam really liked

Remnants.
Artifacts.
Reminders.

It's still so hard to fathom that he's just...gone.

I rub my finger over the bridge of my nose.
There's a bump there, a reminder of the first day of Sam's transplant hospital stay.
The day I passed out, fell, and broke my nose.
There's a bump that you can't see, but I can feel.
I run my finger over that bump.

A remnant.
A reminder.
An artifact of the life that was....

Slowly, there are less physical reminders.

I repacked my bag for the trip.
I left out the change of clothes and the book.

I carefully refolded the lab results and tucked them, along with the tegaderm and the brave robot, back into the front pocket of my backpack.

Like the bump on my nose, I know they are there. I run my hand over them.

Like a talisman, imbued with some kind of magical powers....a touchstone, a reminder, a tangible element that I can take out and touch, feel, hold....

I will never stop missing him.

Step to the Side

The manicure place was nearly empty.
Except for the one other lady.
We ended up across from each other on the drying table.

"So, do you have kids?" she asks me.

I pause. She didn't ask the question the way I've been dreading:
"How many kids do you have?"
She didn't ask that.
So I froze. What do I do? 
This has always been a known landmine for parents like me.

"So, do you have kids?"

"Yes," I say, hesitantly, not sure what's coming next but bracing myself.

"What grades are they in?"

I breathe.
Can I answer this one? 
Do I want to have a desperately difficult and very sad conversation here at the manicure place?

"I have a sixth grader and a first grader...and a preschooler," I answer, screaming inside my head about my forever-and-never-second-grader but calmly drying my nails on the outside.

I don't want to lie.
I don't want to pretend that I have only three kids.
Four, dammit. I have four kids.
But I'm okay, at this moment, on a technicality. 
I'm living in the gray area here.
Because I just want to get through the drying...I just want to make it out of here without crying.

And then I use the best trick in my arsenal:
"How about you?" I ask.

And she talked.
She told me about her kids, and their story.
I listened.
I responded to her.
We had a nice conversation.

I totally sidestepped it.
I didn't answer the question, I didn't break down, I didn't talk about it at all.

Sometimes avoidance is a bad thing.
And sometimes it works.

And that's okay for today.

First day of first grade

FOUR forever

A Week of Firsts

I'm not silent. I write in my head every day, quietly, solemnly, the tears slowly rolling down my cheeks as a drive somewhere or experience something that I think Sam would have enjoyed. I write all the time in my head, but at the end of the day I can barely stand to look at or pick up a computer. It is easier to just sink into the couch surrounded by friends and love and look far beyond whatever image is playing on the television.

I went to Miami last week for a small rabbinic retreat with some close colleagues led by my rabbinic coach, Rabbi Steve Kaye. It was a week of firsts. It was my first time away from my family since Sammy died. It was the first time I got on an airplane. It was my first time back in Florida. It was the first time I saw my cousin and her family since they visited us at Disney and engaged Sammy in what was undoubtedly his last best evening and morning in his life. It was the first time I stood on a beach since I had last been on a beach in Israel watching Sammy play in the sand, and run in and out of the water. As the tears well in my eyes now I remember why I tend to only write in my head.

It was a week of gratitude. I carved out time in the beginning and end of the trip specifically to see my aunt, uncle, cousin and her family in Boca Raton because I will never be able to express enough gratitude for the joy the cousins gave Sammy in their visit and the fire they lit in his eyes during a tiring and trying week. I can still see the fire in Sammy's eyes when I think back to that evening. He was all tucked into bed without a lick of fatigue to be seen on his face at 9:30 at night. He was riveted to the moment having his cousins surrounding him on his bed, next to his bed, across from his bed, asking him questions and engaging him in a conversation none of us ever wanted to end. Sam was his wonderful old self for the first time all week. It was the visits that week that made all the difference in the world. The parks could have mattered less to Sammy because his body betrayed him and he couldn't enjoy all the rides like he did in August (Thank God and the angels who made August possible too. Thank God for all the angels who carried us the whole way through our journey). But the guests made all the difference and the cousins created a moment for Sammy unlike anything any of us could have expected.

In Miami, I was grateful to be surrounded by chevrei (friends) that I trusted with my life and soul as I took my first tentative steps onto sand, standing on a shore thousands of miles away from the last shore I stood upon, literally a lifetime away (only ten weeks ago).  I looked out at the waves and the horizon surrounded by strength and love with no more answers than I had from the last eighteen months. I gain more strength each day, but I don't expect any more answers than I already have. Just questions, endless questions.

In reality every day is a day of firsts without Sammy. It is all just a matter of time as we age forward towards life with only the memories to remind of us of how blessed we were and strength to remind us of how blessed we remain in each day surrounded by family and friends. Sammy's memories remind us of how many blessings filled our days for all of his short 8 years. But now Solly's screams of joy, David's jokes filling the house with laughter and Yael's glee filling the house with celebration remind us of all the blessings that continue to fill our lives each day. Solly most of all pushes us to remember that we are all still here. His constant voice, needs and demands are never ending reminders that we are alive and have a responsibility to carry on. The voices, needs and demands of all my children remind me that life moves ever forward with or without me.

So this last week was a week of firsts to begin filling a lifetime of firsts, inspiring me to write for the first time in a while.

4ever