Still Here After 730 Days

I'm not over it.
I'm not through it.
It hasn't gotten any better.
It hasn't gotten any easier.

I'm not used to it.

You think you can "get used to anything."

After all, the hospital became our "new normal."

But this? Not used to it.

There is always always always something missing.

I've gotten better at working around it.
I carefully skirt the conversations.
I've practiced smiling.
I open my mouth and the words come out, the words I've so carefully put together.
It's not an act, exactly. I'm not pretending or faking in a conscious way.
I'm just....working around it.

But it's always always always there.

Sam.

The missing piece, the missing link, the missing....

Would he be taller? Would his teeth need braces? What size shoes would I be buying for him right now? How many chapters would he negotiate to read each night? How late would he want to stay up? Would he be very excited about the new Star Wars movie? Would he be trying out for the school play?

730 days later and we're just left here to wonder. We're still here. And he's not.

I can still feel his body in my arms. If I close my eyes and breathe very carefully, I remember what it was like to kiss his head. I can hear his voice, his laugh....

Oh, Sammy. We miss you so much.

Three is not the same as four.

Three plus a turtle (on Solly's shirt) 

Last night, fireworks lit up the sky in Sammy's honor, thanks to Rabbi Steve, who made a promise to Sam. It was pouring rain....the whole world was crying with us. 

On the 8th night of Chanukah, we also lit this Yahrzeit candle. 

Thankful

I am thankful for the gift of family. To hold these people who know me so well and to know that their hugs hold generations of love...for this I am grateful. 

I am thankful for the gift of friends. To find kindred spirits amongst all the multitudes out there and to know that they understand me, love me, and choose my friendship too....for this I am grateful. 

I am thankful for the gift of memory. To be able to hold onto those fragments and wisps and to piece them together into the stories that are our lives....for this I am grateful. 

I am thankful for so much even as I am missing so much. I can't be ungrateful even in the face of an empty chair -- how dare I? 

A big group of us serving dinner at the Ronald McDonald House in honor of Sammy's birthday

First snowfall....

Just Not Okay

Dear Sammy,

Today you would be over the moon. Double-digits. I can't even imagine how proud you would be to join your big brother in the double-digit-club and leave your little sibs behind in the single-digits. Yes, I imagine that you would continue to want to be cool like David.

Because, Sammy, that's all I get to do now. I can imagine how you would act, I can imagine how you would feel, I can imagine what you would do. My imagination is big and powerful but honestly, it's just not enough and it's just not okay.

It's just not okay that you're not here to have a big party (would we?) or bug me for a French horn (would you?) or tell me how many different kinds of cake I have to make for you (might you?). It's just not okay that we're celebrating your birthday with cake and dinner at the Ronald McDonald House. Not because that's not a great way to celebrate your birthday. But it's just not okay that you're not here with us. It's just not okay that I'm not adding 10 minutes to your bedtime (so wait, how late can you stay up?) and it's just not okay that I'm not bringing cake up to your clinic appointment (would you have one? or would there just be a "normal" birthday checkup at the pediatrician?). It's not okay that we picked out gifts and we had no idea what you really would have wanted so we got two things that Yael and Solly thought were things you "might have liked" for us to donate in your honor.

It's just not okay that we're not taking a birthday picture. It's just not okay that there will never be another new picture of you ever ever ever again. How can that be? It's just not okay.

It's
just
not
okay.

And that might be the world's biggest understatement.

Love,
Mommy

2nd birthday: Best Shot Monday
3rd birthday: Birthday marathon
4th birthday: This is your birthday song
5th birthday: Five is a big number
6th birthday: Six is Awesome
7th birthday: Lucky Number Seven and Birthday Boy
8th birthday: Little Things
9th birthday: Birthdate

seven

six -- yes that is a tarantula

five -- and Solly is in utero

four

three

two

one

the beginning

Two ways to honor Sam's birthday: a donation to the St Baldrick's Foundation, funding research that will bring more birthdays for more kids or help our friend Emma Rose to create Movie Night Gift Bags for kids in the HOT unit.

Revising History

Oh, I have so much to tell you. So many things to write about. And yet this is the one that wrote itself this morning:

Last night....the Cubs lost.

And Yael said: "Sammy would have been so sad. He loved the Cubs."

And here, my friends, is where revisionist history is born.

Because Sam did not actually care about any sports. It just wasn't something he was into. He was, decidedly, a Bears fan. But that was MUCH more about his loyalty to Chicago (the perfect city, in his estimation, (except for that one time) because it had his favorite stuff there like Lou Malnati's pizza and Curry Hut Indian Restaurant, not to mention his house and family, two things that were always on the top of his list), and also EVEN MORE about his cantankerous nature - more than he was a Bears fan, he was NOT a Packers fan. But I digress.

Sam wasn't a Cubs fan. Not because he didn't like the Cubs. But because he'd never expressed any preference, opinion, or interest at all in baseball (or any other sport, for that matter. I'm not sure he actually knew how football was played).

I'm fairly certain that he never attended a baseball game in his whole short life.

And yet, to Yael, he was a Cubs fan.

Revisionist history? Yes.

My response: a big hug.

If he were here, Sammy might have been sad about the Cubs' loss.

But not nearly as sad as his always-little sister that her big brother isn't here to share this, and every, moment.

677 days....

A Bears fan amongst all the Green and Gold

Once, Sammy met a baseball player. A Brewer, mind you.

 

Too Late

There was a long while in which I really thought Sam was just going to walk in the door one day. You know, I'd look up, and there he would be.

But the other day, I had a terrible thought. 

If he came back now, would we recognize him? Or worse, would he recognize us? Have we changed so much in the last 638 days that we would be unrecognizable to him? Are there so many things that have happened...would it be impossible to fill him in on the last 638 days? (And how annoyed would he be that so much had happened without him!?)

Would he slip back into our family, or would he be a stranger? And what would it be like to have him here again? 

It's like that funky step in your family staircase. You know to step over it. You've got the habit of stepping over it and you can even do it in the dark. And then, finally, one day, the step is fixed. But you don't know how to walk on it now that it's been repaired.

We're stepping over that funky step every day. We've gotten, unfortunately, accustomed to life with a big Sam-shaped hole in it. It's become a fact of life, a part of who we are. 

It's no longer even fathomable to imagine what it would be like to have him here again. It's too late.

And yet...I miss him constantly. Continuously. Each and every day.

This past Friday night, I poured four cups of grape juice without even thinking about it. I didn't notice until it was time to pass out the cups. One to Yael, one to Solly, one to David...and one extra. 

One, two, three, four....

A year ago...Imagine

Two years ago...Busy

Three years ago....It's the Little Things

Pouring

I was driving today, wearing sunglasses.
Because the sun was shining.

And then suddenly, it started to rain.
Pour, actually.

But the sun was still shining.
Brightly.

I looked around, thinking that if I tried hard enough, I would find a rainbow.

But I didn't.
And then the rain stopped.
The sun shone.

Sometimes that is how I feel.
The sun can be shining.
And without warning, a monsoon pours down upon me.
I am overwhelmed with grief.

I want to find a rainbow, to imagine that it's going to end.
The rain stops, but sometimes the rainbow doesn't show its face.

Sometimes I am completely overwhelmed with the realization that I'm never going to wake up and find Sam here.

I hope for the rainbow. For the light and love and blessing.

Sometimes it hides its face.

A year ago: Childhood Cancer Awareness Month and Honesty
Two years ago: Out the Window (yes, we saw a rainbow two years ago today!)
Three years ago: Quiet Shabbat
Five years ago: Differences of Opinion

Caught Up

There's a lot of busy-ness to this time of year.
Busy is good.
It keeps my mind on my task, focused on the child in front of me. It keeps my mind focused on her needs or on his needs, on making a lunch or packing a backpack or did you take a sweatshirt?

And busy is bad.
Because I can, for a few minutes, get so caught up in what I'm doing that I don't notice that there's one kid missing.

And then, wham.

Today was the first day of school. I've waxed poetic before about how much I really love the first day. New potential and all that.

Today was no different. I lined people up for their pictures. I made lunches. I packed backpacks. I made sure that sweatshirts were taken.

Driving to the elementary school, somehow...it hit me. How could I only drop off Yael? Shouldn't I be dropping off Sammy?

I drove up to the school and I hope she thought that the tears were the usual mom-loves-the-first-day-and-gets-all-weepy type of tears. I hugged her tightly, so tightly. I kissed her little face and told her to be amazing.

And then I got back into the car. Solly didn't notice that I was crying hard.
He asked for Shut Up And Dance.

I took a deep breath, called it up on my iPod, and drove off, music blaring almost as loud as it would go.

Sometimes that's just what you've got to do.

love Solly's shirt choice today

Solly's first day was one day before, but he got in on the group shot today

Last year...Class lists
Two years ago...Milestones
Three years ago...Back to School and Trust
Four years ago...Back to School Tradition
Five years ago...For Everything A Season

Searching

It seems that I spend a lot of time searching.

At camp, I couldn't help but look at the kids and wonder which ones would have been Sammy's friends.

I search the faces of the little boys and girls who are about his size. I see the ones that Solly gravitates toward, and I wonder if Sam would have been friends with those kids. Does Solly see something there that Sammy would have seen?

And sometimes I catch myself looking out at that sea of faces and I realize that I'm searching for Sam. Where is he? I've picked out my other kids amongst all the others, but where is Sam? And then that wash of realization....oh, yeah.

I searched the 4th grade class lists. Which one would have been his? Would he have been happy with the teacher assigned? I searched the lists....wishing, hoping, wanting his name to be there.

I search for his face in my dreams...and it's not there.
I keep searching.

Solly keeps telling me that he's sad that he isn't dreaming about Sam.
I tell him to keep looking.

It's been 610 days since Sam died. I don't even know what to do with that number. How is it that it feels like forever ago and yet I can still feel the fuzzy skin on his head in a whisper on my fingertips?

Last year: Incomplete
Two years ago: The Special Spice
Three years ago: Bouncing
Five years ago: What I Did On My Summer Vacation
Six years ago: Restful Vacation
Seven years ago: 13 Reasons I'm Not Blogging
Eight years ago: Wordless Wednesday (aka, Sam throws a tantrum)

Sand

Yael and I were doing yoga at the beach.
She looked down at my mat.
"It looks clean," she said, "until you look closely and see all the little bits of sand caught in the ridges of the mat."

That's how it is right now.
I look fine. Most of the time, I feel fine.

But the grief is there, like little grains of sand caught in the ridges of the mat.
You can't always see it, unless you look closely.

And it's not annoying...not really. But then you put your hands down on the mat and they come away with sand stuck to them...and then it's still not that uncomfortable...until you find that you need to brush your hands off...and then it gets in the way.

But then you get used to brushing your hands off between each yoga pose. Because you can get accustomed to nearly anything, can't you?

And the sand never goes away. You can't fully brush it off, it's always there, at least one tiny grain, always. Even many days after a beach trip, there's a bit of sand stuck in your toes or in the car mats.

One bit of sand can rub a blister in no time.
That's all it takes. Just one bit of sand.

This has been a fairly "normal" summer. Camp, work, beach, play, popsicles...you know.

And there's always that grain of sand against my hand, that ache in the back of my throat, that feeling that something just isn't quite right.

When you look closely at the grains of sand caught in the mat, they glitter ever-so-slightly, the way that sand in the sun catches the light and sparkles. The bits of sand can make a blister, no question. But the sparkle? That's Sammy too.

All the beaches of our life....

Tel Aviv

Glencoe Beach -- I have thousands of pictures, and this was one that I didn't remember.

Somewhere in Florida

And of course, at OSRUI...

One year ago: Bothered
Two years ago: The Next Step
Three years ago: Catering
Four years ago: Sam, the Kosher Ham
Five years ago: What I did on my Summer Vacation
Six years ago: Making Mud Puddles
Seven years ago: A Strange Obsession with Snacks (one of my favorite Sam posts ever)
Eight years ago: Best Shot Monday
(Can you believe I've been blogging this long?)

Wishing Flower

Ooh! Ooh! A wishing flower!
One for Yael and one for me.

What are you guys going to wish for?

For Sammy to come back.

Yeah, me too.

Last year: Ephemeral Moments
Two years ago: Heat Wave
Three years ago: To Shabbat and Beyond
Four years ago: Gotta Love All God's Creatures
Five years ago: Favorite Part of Camp
Seven years ago: Enjoying Summer

Not Forgetting

Remember, we talk about Sam all the time.

And every so often, when it feels like we've gone several days without talking about Sam, Solly will pipe up with, "I think I'm forgetting Sammy."

I think he means, "hey, folks, you haven't talked about him in the last day or so," but since he's four and his options are limited, that's what he comes up with.

At least that's what I tell myself.

Because how could it be that he could forget his brother? How could it be that we could forget our Sam? Of course we can't, of course we won't.

Each day, he feels farther away. His peers get that much taller and more grown-up. Another summer is midway through and he's not amongst the campers.

Today, Solly engaged in two of Sammy's favorite camp activities: he rode horses and he climbed the Alpine Tower. And he did it all wearing a shirt that said "Sam." It wasn't on purpose when he got dressed this morning, but it felt just right to see him sitting up there on a horse, wearing one of Sammy's shirts.

We're not forgetting him anytime soon...or ever.

Sam in pajamas, on a horse at camp

Solly, on a horse at camp, no pajamas

It's hard to fathom how much alike these two are....

I *knew* there was a pic of Sam that looked JUST like Solly...and I found it!

Sammy, up in the air....

Summer 2011

Where we were...
2009: Update from camp
2011: Making Friends
2012: Owie Owie Ding and Hair Today
2013: Ninja Leukemia
2014: A Day in the Life and Day 201

#StepUp for Sammy

Two summers ago, we were living in the Ronald McDonald House and Sam had a morning bone marrow biopsy scheduled. These required that Sam be "NPO," which is hospital-speak for "starve your kid." His NPO started at 5:30am, I believe. Anyway, the point of this is that Sam was so worried about not eating that he wanted me to wake him up at 4:15am (his choice of time) so that he could "eat a little something" and then go back to sleep.

I think he was testing me.

But I took the challenge, and I set an alarm for 4:15am. And I remember doing a lot of exaggerated moaning and groaning about how much I must love him to get up so early...and then I tagged the alarm with "I love Sam."

And then when the alarm went off at the ridiculous hour of 4:15am, he groggily asked if I could try again at 5am.

So I, ever the loving mother, set another alarm for 5:00am. This one I tagged with "I love Sam even more." If you're keeping score at home, he didn't want to get up then either.

I'm one of those people who keeps all the alarms in her phone. I figure they might come in handy another time, so as not to have to make new ones. So those alarms, for 4:15am and 5:00am, are still there.

Yesterday, I got up at 4:15am.

"I love Sam."

I thought it was entirely fitting, since I got up at 4:15am to catch an early flight to Washington, D.C., where I visited four Congressional offices. In each one of them, I explained that I was there because my 6-year-old son Sam was diagnosed with leukemia and he died only 18 months later. I reminded them that the statistics about survival rates for childhood cancer are more than just smiling bald kids and that Sam wasn't lucky. And I reminded them that even the "lucky ones" are impacted by years of medical fragility and have challenges with access to the care they need. I reminded them of the upcoming appropriations for the National Institutes of Health and the National Cancer Institute and I begged them to give as much money as possible for cancer research. And I asked each of them to sign on as sponsors of the STAR Act, (you can read more about it here) which, amongst other things, asks for a pediatric oncologist to sit on the National Cancer Advisory Board.

Washington was bright and hot and didn't feel like Sam at all.
No feathers or turtles popped up along my way.

But all throughout the day, I felt a warm ball of pride that I could say Sammy's name over and over again in the halls of our government offices. He didn't even have a chance to vote, let alone run for office (He probably would have made a phenomenal politician. He had mad negotiating skillz.) but he  was there with me, pressing me forward and lifting my steps.

If Sammy taught us nothing else, he certainly taught us that one person CAN make a difference.

Do you want to do more? Read here for how you can #StepUp to help make childhood cancer a national priority.

Three years ago....Checklists and PomPoms
Two years ago....Leaky Bubble
One year ago....Instead

June, Again

June is the beginning of summer.
June is moving onto the next grade and saying goodbye to teachers and packing up the locker.
June is popsicles on the porch and the sandbox open and the hoses spraying.
June is finding the sandals and hats and sunscreen.
June is stretching your bike legs and packing for camp.
June is camp.

And yet, June is the beginning of our ill-fated odyssey with Sam.
June 9th, 2012, the day that we took him to the ER, the first time that the word "oncologist" was spoken in the same breath as our child's name.
June 2012 was spent in learning to navigate Cancerland and figure out where we all fit in. June was schedules and plums and heartbreak.

June is every day a different memory.
June was the month we spent, in 2013, working out a new plan, into uncharted waters, with unfamiliar protocols and uncertain results, and yet filled with joy and love and togetherness.

And last year, June was remembering and thinking about alternatives. June was second-guessing everything. And June was ice cream and graduations and even one crazy trip to the ER.

And here we are again, June. Missing Sammy so much as we transition into the next season, as we start the next part of the year. Packing up the kids for camp, wishing SO HARD that there were three big duffel bags filled with shorts and tshirts and funky knee socks and old towels. (And wondering how much MORE irritated Solly would be, to be left behind by THREE older siblings instead of two.)

Swimming through the sea of memories each and every day....

June 2006

June 2007

June 2008

June 2009

June 2010

June 2011 (Preschool graduation)

June 2012 (days before diagnosis)

June 2013