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

Four

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.

Four....it was such a nice, complete number.

Three feels so...off. Wrong?

Sam wondered if we would have another baby...to 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

Balancing

"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 advisers...am 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

On The Verge

Tears
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
air.
A moment of
quiet.

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

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...

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.

Thirty-One

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...

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.