Friday, January 31, 2014

Testing It Out

I've got a little tweak in my shoulder.
Just a little pain.
Sometimes when I move my arm one way or another, sometimes in particular poses in yoga. Sometimes when I pick up Solly or whatever...

It comes and goes.

Today at yoga class, I was thinking a lot about this shoulder, and testing it out.
I would push it a little, feel the pain. Then I'd back off. Sometimes something that I thought would hurt actually didn't. And sometimes it hurt when I didn't expect it. It was the focus of my practice today, and it made for an odd feeling.

This is what it is like living right now.

There is a terrible pain (far more than a "tweak," let me tell you) and I keep testing it out.
I push at it. I look at pictures of Sam, or I tell myself a Sam-story. A few minutes of quiet may go by inside me and so I check it out, I test the pain. I poke at the wound a little, checking out what hurts and what doesn't. And then I back off. And sometimes, without warning, it hurts when I'm not expecting. The pain flares in a different or new way that I'd not yet tested out.

It comes and goes. I'm not completely debilitated by this pain. I move through the vinyasa, I push into downward dog, and I am aware of the feeling, the sensation of hurt, but it doesn't stop me. I move through each moment, I talk and think about Sam and I am so very aware of the sadness and pain and hurt...but it doesn't stop me from living and being and breathing. Sometimes, in yoga, I stopped and sat in child's pose, resting from constantly focusing on this small pain. Sometimes, in life, I stop and cry or breathe or stare off into space, refocusing myself as I miss Sam with every breath.

He's always there....
Classic Sam face, 2011
So many pictures that were "throwaways" are now so precious and holy. So glad I never threw any away...Fall, 2011
Sam's birthday, 2010

Wednesday, January 29, 2014


I just can't shake the feeling that there just aren't enough kids.

I cut things into four portions.
I think of things in fours.
I look in the backseat and there's a seat empty. was such a nice, complete number.

Three feels Wrong?

Sam wondered if we would have another replace him.
Even if we had a hundred more babies...they couldn't replace him.
Even if we had fifty kids, we'd still always be one short.

And that's just how it's always going to be...
A void
A gap
A space
A hole in our lives.
And I'm learning that I don't want to fill the hole.
I don't want to cover it up, or move away from it.
I know I just have to carefully work around it, live with it, notice it, sometimes climb inside it.

Four is a beautiful number.

The first picture I ever got of the Fearsome Foursome
February, 2011
September, 2011
Purim, 2013 (Solly refused to wear his Scarecrow costume, but you get the idea)
The last picture that I ever took of the four of them...December 4, 2013

Friday, January 24, 2014


"Take your right foot and ground it down in in the earth, then lift your left foot up."

As the standing balance pose starts in my yoga class, I am reminded of the teaching I once heard about balance. Balance isn't about stillness. It is a constant state of adjustment, a constant need to focus and concentrate, to adjust and readjust, to sway with the breeze. A slip in concentration or anything can cause the balancing act to fall.

I love this teaching, because it reminds me that no one, no matter how self-assured and "perfect" they appear to be, is standing still. We are all constantly adjusting our course, rebalancing ourselves, breathing and focusing. We're never simply standing still.

I'm feeling a lot of that right now. A lot of adjustments, shifts, balance changes. Sometimes I'm completely in focus, the balance seems to work. Sometimes I'm a little off and I have to touch my other foot down to the ground. Sometimes I have to sit down entirely! And then, since life, like yoga, is a practice, I just get up again and set my foot in the ground, take a deep breath, and try again.

August 2010
And then there's the other lesson of balance poses...the self-talk that goes along with them. The negative, especially when it doesn't work: What's wrong with me? Why can't I do this? How hard is it to stand on one leg? Of course, the other side: Nice try. That was longer than last time. It's okay. It's okay. Whatever I do is okay.

So much of this grieving business is also about that self-talk for me. Someone suggested that I might "not be okay" this week. Trust me, I'm probably not. But sometimes I am. It's not exactly definable -- how do I quantify or qualify how I'm doing today? I check myself out with my unofficial council of I okay today? Is this right? Is this? How about now?

Yesterday's yoga teacher stressed moving deliberately and slowly. There's a time for moving slowly and a time for moving quickly, she said, and the key is figuring out which time is which. Some things seem to be moving quickly. Life just goes, even if I'm not quite ready for things...that darn calendar. And some things move slowly...and that's okay. Sometimes I want to move more slowly...accomplish one thing at a time. Sometimes I can do more. Each day is a balance.

On the way home from preschool, Solly questioned me: "where is everyone?" I explained to him that Daddy was picking up Yael and that David was at Bubbie and Zeyde's house.

And then I waited for him to ask about Sammy.
But he didn't.
So silently, in my head, I thought about what I would answer.
And Sammy's at the cemetery.
No, I thought, that's not what I would answer.
Sammy is in our heads.
Sammy is in our hearts...Sammy is right here.
Florida, 2011
Balancing in 2010

Monday, January 20, 2014

On The Verge

threaten to spill
out of my eyes

at the strangest moments

I don't know what
brings it on.

Sometimes it makes sense.
A flash of
a memory.
A hint of
a future
not lived.

Sometimes it does not.
A breath of
A moment of

Then again…
it never makes sense.
None of this makes

Maybe I will
wake up
and find out this was all
a bad dream…
but I know I won't.

And so I square up my shoulders,
wipe my tears,
grateful for the hand
of a friend
on my shoulder...

Until the next time
I find myself
on the verge
of tears.

I spent less than 24 hours at camp yesterday and today…breathing in the rarefied air of camp in the winter…together with friends and colleagues, some of whom I was seeing for the first time since Sam's death. To be in that space where he learned to roll over, to crawl, to pull himself up…was breathtaking and heart-filling and also so very hard and sad...
Summer 2006
Summer 2007
Summer 2009 (notice the PJs)
This past summer...

Saturday, January 18, 2014

This Old Life

Throughout the last two years, Sammy used to say to me often: "I miss my old life."

I feel that way all the time now.
I miss my old life. 

I miss my family of six. Desperately.
in the Sukkah, 2012
But which "old life" am I missing?

Do I want to turn the clocks back to May of 2012 and be in our "normal" life? Oh yes, I miss the oblivion of a "charmed" and "perfect" life with four healthy children whose biggest problems involved birthday parties and math problems and potty training. I desperately mourn for the sheltered existence of my children and their friends, of my loving circle. With each pregnancy, with each birth, with each generally happy moment of my "boring" life that I chronicled in my own personal blog, I knew that I was unbearably blessed…I was annoyingly happy, even with cranky toddlers or the everyday bumps in the road, and I had never truly known sorrow. 

And I can't even imagine returning to that life. What would it be like now? And since I can't turn back the clock, I can't go back, I can't hit the "reset" button…I'm here now.

Am I missing the "cancer parent" life that I was living up until November 12th? (I know for sure I'm not missing the "terminal diagnosis" life that we lived for that last terrible painful month. We don't even have to go there.)

Oh the pain and guilt of telling you that I don't know that I would want to give up some of the last two years. We made friends -- real, beautiful, powerful friendships -- with families in crisis, people who helped us, doctors, nurses, staff and volunteers at so many organization....all of the people that touched our lives and became our community. How could I beg to erase that even as much as I wish I could turn back the clock? 

There were people who were constant forces in our world for months at a time...and now they're just not. Some of them still are…and there's a whole new element to our relationships….

When Sammy was in treatment, we knew kids who died. I tried not to imagine their parents slipping out of my circle, I tried not to imagine what it must feel like to know that MY child was still in this, MY child was doing well…when theirs had died. So I tried to be gentle and respectful, keep my distance and yet not shut them out. It was a hard line to walk.

When Sammy was in remission, we knew kids who were still in treatment. I tried desperately not to flaunt our happy…nay, JOYOUS, feelings that all had come right with the world. I held onto their reality just a little bit, so I would always know that my own bliss could be popped, so very easily. And because of who we are and how we function, I wanted to think of ways to make their lives better; we completed a few projects and brainstormed others that we were going to accomplish and money we were going to raise. We imagined the future, keeping their reality in our minds, and the ways that we, with Sam, would triumphantly return, in honor of milestones and happy occasions.

And when Sammy relapsed…oh.... not only did we meet even more families, make more friends, we were even more immersed in the hospital world. Our life at Ronald McDonald House was terrible but beautiful, and we were constantly aware that everyone we met had a scary story to tell, and we wanted to help them all.

And now?
So many of the kids that we knew on the HOT unit, RonMac and in the wider cancer-and-illness-parent-world are still in treatment.
Some of them are doing great, still plugging away at chemo and fluids and line flushes…getting good scan reports and having MRIs and going on Wish trips and receiving packages and gifts and celebrating the everyday moments….
Some of them are not doing so great. Difficult decisions, scary hospital admissions, new procedures, not-so-good results, waiting...

As Sammy was dying and in the aftermath, I heard a lot of our cancer-and-other-illness-parent friends talk about "survivors' guilt." We're a silly bunch, us parents of sick kids. Because how could we be feeling guilty that our kids are still undergoing poisonous chemo treatments and bearing the badges of ports and central lines…still getting labs and tests and scans…but there's a guilt there, a feeling of "why is my kid alive when Sam is not?" Through our experience with Sam's brief remission period, I get it. I really do. And I want to tell you all this, right here, today:

Keep going! Live! Live! Live! Your child's living does not make me sad. Your child's living gives me hope. Your living fills me up with the breathable air that there is a light for all parents at the end of the long tunnel of this hell that is pediatric illness…that someday there will be cures and inoculations and something more than the not-quite-right methods we're working with now. The pictures of kids off treatment now with their gorgeous chemo curls and their everyday-ordinary-happy stories…they are so beautiful to me. And the stories of our friends who are still in treatment? I feel with you, I hurt with you, and I know how you feel…and I pray for you. Oh, how I pray.

The day before Sam died, I cried with another parent in the clinic. And I told him, "I want your child to live because her living will be a remembrance of Sam. Each child who knew him and shared this experience with him is another memorial to my son." Okay, maybe I wasn't quite that eloquent through my tears on that terrible day. But it's what I really wanted to say. Childhood illness isn't shiny ribbons and bald heads, and it isn't a commercial with pretty music and hopeful movie stars. These kids know it, and when they are grown and still remembering their forever-8-year-old friend Sam…they will not give up the fight to help eradicate these diseases.

And now I'm going to share my own confession on the other side of this: there's guilt here too. Michael wrote so beautifully about his "loss of fear," fear that he would be the one to set Sammy down a long spiral of decline, that the future would be uncertain, fear of the unknown. My guilt is similar. Aside from the pain of missing my son, my problems have suddenly returned to the "normal" ones from before, from that magical Time Before Cancer. I'm thinking about well-child visits and ice skates and birthday parties and homework and play rehearsals and Bar Mitzvah planning. I booked a ticket for a plane ride without having to consider how clinic appointments and pharmacy deliveries will fit in. I schedule appointments without fear that a fever will land us an unexpected hospital stay, and I am a little less stressed and worried when a kid starts to have a runny nose.

I knew this day would come, but I imagined it differently, of course. I imagined that I would be giddy with relief to focus on these mundane details because it meant that Sam was "all better." It happened too fast, it came too quickly. And so I continue to be sad and scared and worried for my friends who are still moving through treatments and unknowns. And the only word I can come up with is "guilt" to describe the feeling…not that I wish I was still in the throes of it, but heartbroken that others are. And grateful, too, that they are. Because it means that their kids are living, living, living. And I want that, I latch onto that. I eagerly await their updates because I want to hear how well they are doing…and I cry and rail and pray when their news is bad. And you might say I should stop reading, I should stop talking to them, I should stop…but I don't want to. They are my people, my community, my family. How can I step away? I know that eventually, as time goes by and treatments conclude and remissions are declared…our direct connections to the patients will fade. And that will be okay. I won't forget that even though I don't know their names and their stories, there are 24 beds on that unit and countless other kids all over the country fighting for their lives. And we will continue to do something about it….(See here, for starters.)

I miss all of my old lives.

Just some of Sammy's hospital friends…this doesn't even begin to cover it. And at RonMac…and the kids' schools and camps and everywhere we went, so many many many people that loved and cared for us…and still do. Thank you all.

Wednesday, January 15, 2014


I've been so focused on the end of sheloshim…I hadn't given much thought to day 31.

(You may have heard of the Jewish custom of a year of mourning. In truth, this is only for a child mourning a parent. All other relationships leave us with 30 days of mourning before we re-enter the world. Even a child.)

Today was the first day of the rest of my life.
A life without Sammy.
And a life that I have to continue living.
Even though it is so hard.
I'm not done mourning or grieving or missing him.
I will never be done.

But today…I took Solly to the doctor.
A well-child visit that was postponed from his third birthday last month.

I considered asking for a blood test.
A simple CBC to make sure things were "normal" in there.
Shouldn't we check?
But my inner practical self prevailed…and I didn't ask.

When the nurse put the thermometer into his mouth and I heard the beeps…oh, I nearly collapsed.
But I couldn't help but giggle at his expression. No one had ever put a thermometer into his mouth before! The nurse also realized that this was a total failure…Solly didn't quite get the whole under-the-tongue thing, so we switched to under-the-arm. And the moment was over.

And it was okay...
On day 31, I ran errands.
I stopped at Starbucks.
I cried in Trader Joe's. Just a bit.
I made dinner.
I helped with homework.

And I thought about Sammy.
With every action.
With every moment.
With every breath.

And I kept going.
Today, I put one foot in front of the other.
For today, that is enough.
Classic Sammy stare-down...July 2012
Of course he's in his pajamas...

Tuesday, January 14, 2014


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.

Sunday, January 12, 2014

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.

Friday, January 10, 2014

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)...

Wednesday, January 8, 2014

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

Saturday, January 4, 2014


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

Thursday, January 2, 2014

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. 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.

Wednesday, January 1, 2014

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…)