Thirty

Thirty days ago, we put you in the ground.
Thirty days ago, it was cold and snowy.
Thirty days ago, I was numb and I barely noticed the cold.
Thirty days ago the cemetery was filled with people, a vast crowd of bodies that held us up.
I watched the earth fill the grave.
I heard the scraping of the shovels.
Thirty days ago…

Today we stood in that same place.
It was so very very cold.
We huddled in a circle together, a circle of love and warmth.
Just a small group of us.

And some bright balloons, bright against the white sky.
So bright.
Like you.

Thirty days have gone by.
An eternity…and an instant.

Oh, Sammy.
We miss you every minute of every day.

Present Tense

We put on a movie, and Yael says: "oh, I saw part of this with Sammy once. He loves this movie."

I am playing with Solly and I ask which color he likes best.
"Green," he says.
"Sammy loved green," I say.
"Yes, Sammy loves green," he responds.

They talk about Sammy in the present tense.

I wish they were right.

Modern Sheloshim

This coming Tuesday, we mark the end of the sheloshim period, thirty days since Sam died.

Who says I'm not counting?!

Jewish mourning customs are carefully structured in levels of intensity…from the depth of the restrictions placed during shiva, the first seven days, to the somewhat lightened rules during sheloshim, the first thirty days. Traditionally, there are strict rules for mourners, which can actually be very helpful. If "the rules" tell you that you aren't allowed to shower or shave, you feel less like a crazy person when you really don't feel like it. If "the rules" tell you that you're not allowed to study Torah, you don't have to justify why you can't focus on a page of words and make sense out of it. And if "the rules" tell you that you are supposed to sit on the floor, you feel like your desire to curl up in a ball on the floor and cry is totally normal.

And of course, there are reinterpretations and modern interpretations, and times change and ideas change. That all fits in with how I look at my Jewish observance and how I look at the world.

The sheloshim (30 days, counted from the day of the funeral) period has less strict restrictions on mourners. While many normal activities can be resumed, "the rules" tell you that not shaving or changing your clothes is okay, and listening to music or attending social events is mostly restricted. Writing these words in the period of sheloshim, I can tell you how wise they are. Some days I'm totally good with getting up and putting on clothes and going out and doing things. And other days I just want to stay in my pajamas.

These "rules" (and my quotes are not intended for sarcasm, not in the least. But they are to indicate that I see these as traditional guidelines that help to focus and inform my behavior…not strictly dictate) are awesome in their detail, in their attention to how people actually feel, in their understanding of the human need to mourn and to also be told to try to begin to move through. So often rules give us structure and even permission to believe that our feelings are valid and real and "normal."

But there are so many really MODERN things that are missing from "the rules."

What do I do about Facebook (and other social media), which is so much a part of my "real" life? How do I engage online in ways that are comfortable for ME and for others too? I've been so lucky -- my social media is full of Sammy. Some days I want to post cute pictures or recipes or funny jokes or snarky ideas…and some days I don't. And how do I make a distinction for myself…knowing that it's really only about me -- I think that many people wouldn't even notice or judge or care. It was an evolution, not a set of rules for myself, but I've spent these thirty days seriously considering the posts I write, the pictures I post, and the way that I say things.

Every Friday, it is my custom to wish my Facebook (and Twitter) world a Shabbat Shalom. Usually it's written with sweetness and joy, with a hope for a day of rest filled with love and blessing. Usually the responses are in that same vein. I haven't quite had the heart to wish a whole world a "shabbat shalom." Sammy's death on Shabbat has forever colored how I feel about Friday nights. I've somewhat avoided it…using other words to "sign out" on Friday nights. Will I feel differently when sheloshim ends?

Every Saturday night, I write "Shavua tov! How was your Shabbat?" (Shavua tov = a good week)
I know that I write it every Saturday because if I don't, I get gently heckled by a few friends who write it to me! I haven't posted that since Sammy died. It's even more different than "shabbat shalom" -- it actually has the word "good" (tov) in it. Oh, friends, I definitely want you to have a good week. But similar to wishing me a happy birthday…I'm not quite sure I'm ready to throw that sentiment out in the world yet. So I've avoided it. Posting pictures of our Havdalah candle, ending our Shabbat with light and warmth and blessing…this has been my avoidance tactic. I'm not even sure anyone has noticed (the kind hecklers are mostly in on my musings) but it's had an impact on me. It's different, it's where I am right now…

And then it's over. Thirty days, and the rules are done.
That's it!?
As much as I love and value the rules…I'm not done. How can I be?
So now what? (I think that's a whole other post…)

When sheloshim ends, we return to "normal," to our regular activities. Aside from the "real life stuff," let's keep going with the online world: Do I post funny pictures, silly quotes, recipes, ideas, ordinary stuff? Do I share my usual life -- movies, books, articles? Do I express my frustration with some of Solly's antics, tempered by the idea that I value his presence all the moreso in the depths of missing Sam? I offered up a thought this week, when I posted an article about grieving parents, that I don't want to become a "one trick pony," only posting about grief, only posting about kids with cancer, only posting about the swirling uncertainty around us. That's not who I am, it's not who I want to be. Many friends reassured me that I'm not…and I don't know where I'm going or what I'm doing or how I'm feeling…and I've decided that it's okay. I'm okay with posting what I feel at that moment. Feeling like posting funny pics? Okay. Feeling like posting something sad? I'm hopeful that my online community will continue to be okay with that too.

Navigating the waters of mourning is difficult each and every day. I am grateful for the structures of tradition and for the practices of reforming that allow me to interpret and re-imagine, to figure out how these ancient pathways can lead me into my modern existence.

And we just keep on swimming...

Sammy, finding something really fascinating online (in 2008)...

Winding Road

I get the "how are you" question a lot.
I still don't have a good answer.
Sometimes I give a long answer…and I might end it with "aren't you sorry you asked?"

That's not to say that people aren't well meaning or willing to listen. (Usually they answer, "of course I'm not sorry I asked.")
Sometimes I don't give an answer beyond "I'm okay."
It just means that I don't always have an answer ready.
Or maybe I'm actually feeling okay…at that moment.
I don't know.

Today I went to my first yoga class since we moved back from Ronald McDonald House.
That's a long time.
I missed it. I missed the routine of spreading out my mat and taking that first deep cleansing breath. I missed the teacher pushing on my shoulders to deepen my downward-facing dog. I missed the shared feeling of a roomful of people trying really hard to not pay attention to anyone else.
A friend invited me to join her and I was so grateful to take her up on the offer.

Whoa, were there a lot of landmines in attending a yoga class.
I couldn't help but think of Sammy and his yoga experiences, which he loved, by the way.
Spreading out my mat…the last time I remember doing that was in the hospital.
The teacher happened to suggest that we poke our heads out like turtles…really? turtles?
And I couldn't help but hope that no one saw the tears running down my face when I smelled the scent of the china-gel on the teacher's hands. I could barely take that first deep cleansing breath. I could barely breathe at all. I could barely breathe for wishing that it was October again...

And then…near the end of class…the teacher explained that our breath should become slower. That we should lengthen the exhales…and suddenly I was transported to those last few minutes of Sammy's life. As his breathing slowed down and unconsciously I found myself matching my breaths to his, holding mine, waiting for the next inhale, praying that it would come….and then it was over.

The class was over too.

I wiped my tears (and sweat -- it was a "hot yoga" class!) and emerged back into the bright world…expecting to feel more fragile but instead feeling just a tiny bit stronger. I melted down (a few times, actually), yes. But I kept on going.

At one point during the class, Sheryl Crow's voice came through the speakers:

Everyday is a winding road
I get a little bit closer
Everyday is a faded sign
I get a little bit closer to feeling fine

It was another tearful moment for me. No kidding…every day is a winding road. I never know exactly what's going to make it or break it. And sometimes it's all just fine….sometimes it isn't. It ebbs and flows, like a yoga class.

This is hard.
Probably one of the hardest things I've ever had to do: find my way along this winding road.
I'm so grateful that I'm not alone.

yoga on c.diff lockdown

Yoga with Danny

Sammy's favorite pre-bedtime activity in the hospital

Selfies

I noticed Sam's iPad sitting on the shelf, so I decided to browse through his photo album. Along with many pictures of frogs and turtles that he's saved from emails and such, there were a few selfies.

I sent them to myself.
From Sam's email address.
Just so I could get an email from him.

Looking at pictures of Sam doesn't make me sad. Well, it doesn't make me any sadder than I already am. Sometimes it makes me a little bit happier, actually…to see his sweet little face.

It makes me happier when I think about the most famous of all Sam's selfies:

And this, which never fails to make me giggle:




Some things are easier than others.
Some things are just…difficult.

The things that seem like they should be simple become so much bigger.

I take a lot of pictures with my phone. I know many people who never take the pictures off their phones, but not me. Each month, I carefully file the pictures in a folder on my computer and I take them off my phone. It's just what I do.

But I haven't done it yet. I haven't taken November's or December's pictures off my phone.
I know that when I delete them, I will not be able to scroll back through the last two months of Sammy's life. The task grows a little in weight with each passing day, it seems. If I would just do it…it would be done. I could find ways to save pictures of Sammy to my phone each month. I can always call up this blog or my dropbox files. But each time I go to do it, something distracts me or I find a reason not to do it…I'll get there...

Twenty-two days have passed since Sam died.
When I said I wasn't counting…I lied.

The last selfie I took with Sammy…in Orlando

Paper Time

Remember how I said I can't stop time?

I still haven't figured that magic out, by the way. 

But I had managed to avoid it a little. Denial...in the form of calendar rebellion. 

You see, I'm a digital gal. Except for the one big paper calendar that hangs in the kitchen. It even went with us to RonMac, it was one of the things that helped me to feel like we were creating a home there. Home is where you hang your calendar, right?

The calendar in the kitchen was, of course, on December. 

I kept lifting December to write on January. I kept lifting it to glance at January's schedule. I knew January was coming. I did. I really did. 

I just wasn't ready to turn the page.

I wasn't ready to turn the page on Sammy's last month. 

I wasn't ready to step into January. 

In my kitchen, maybe, it could just stay December a little longer. 

But today my mom came over. And to her, it was just a calendar that needed to be changed. So she did. 

And as she was doing it, I thought to protest. But how could I? She was right. It needed to be changed. It was just a piece of paper. Not a symbol. And that's ok. 

It was time....

I still miss December.

Not Counting

In November, before Sam's relapse (BMT +65), I wrote:

I think we're always waiting for the other shoe to drop. We are here now. In this place between normal and not-normal.

I knew we would always live with that waiting…with that "other shoe" over our heads.
I knew that when we rang the bell last January that we were not "done" and that nothing would ever be the same. I chafed a little against the jubilation that so many people expressed to me. There was always a fear in the back of my mind, a worry that wouldn't go away.

After all, I knew the statistics. I knew that 50% of all AML kids relapse. I knew the odds that were not in our favor.

I also knew that childhood cancer survivors face many many long-term problems. Yes, I was glad to have the luxury of thinking about "long term" problems, but I was also terrified of what was to be.

When Sam relapsed in April, when we began the journey toward transplant, there was always that second shoe hanging over our heads. When would it fall? There is no bell-ringing with BMT for leukemia. Yes, there are days that are milestones, and there are days that a survivor can breathe easily. There are ways to feel secure that leukemia isn't on the horizon…but I also knew that I would, forever, examine every bruise and bump, every cough and wheeze. I knew that after BMT, Sam faced a world of new complications and problems in the "long term" -- we were facing secondary cancers, cataracts, growth issues, brittle bones…you name it. I was very fearful of a life for Sam that was painful and uncomfortable.

And then the shoe crashed down.

There's nothing left hanging over my head any more except the terrible vacuum of grief.
It's different. It's unbearable but in a totally different way.
I'm not waiting for the other shoe to drop.
It did, and I am left tightly holding a brand-new pair of tear-stained shoes.

So where are we?
We're about halfway through our sheloshim period, the first 30 days of mourning.

I just told a friend that I'm trying desperately not to count the days since I last kissed my Sammy.
She said, "you? you count everything!"

Every day forward is another day without Sam…and I can't stop time.

Many many people keep hoping for 2014 to be a "better year."
I'm not sure there can be a year better than the one that just ended.
Because there will never again be a year with Sam in it.

September 2007 

Always in his pj's...

Sam's famous grumpy-silly face

(Look, I'm fully aware that down the road, we will have good years. In that very pragmatic part of my brain that is still firing on some rabbinic cylinders, I know that we will process and heal and come to many days of great joy. I get it. I'm not teetering on the edge of a cliff, here, I promise. But for today…)