The Year that Was

On January 4, 2013, Sam rang the bell to signal the end of his treatments.
The first week of 2013.

On March 29th, he was wheeled down the hall for a bone marrow aspirate to confirm what the doctors were pretty sure that they already knew...relapse.

On August 27th, his new stem cells were welcomed into their new home.

On November 12th, another bone marrow aspirate confirmed, yet again, what our doctors were pretty sure that they knew.

And on December 14th, our incredibly well-loved Sammy took his last breath.
 
It just seems so unfair and horrible, so crazy and unbelievable, so inconceivable...
From the fullness of hope in January through the twists and turns of the summer and to the ultimate depths of December...
The year 2013 was a roller coaster. Ups and downs and all arounds.
Stop the world, I want to get off...
In 2013, we lived each minute, each moment. We never took a single bit for granted.
How could we?

I will never ever ever understand.
And yet, I will always be proud of this year. Of the work we did all year long, of everything we did for Sam and for all our children. I will always be proud of the way that we kept Sam healthy and happy, of how we made each day possible and how we never let up in our belief that we would get through this. We flushed those darn lines and we ran that darn micafungen and we washed our hands and we kept him out of the hospital all summer long, through multiple rounds of chemotherapy and bone marrow aspirates and tests and worry and fear…we uprooted our family to live at the Ronald McDonald House and we went to art therapy and music therapy and family dinners…our kids went to camp and school and the library...we went to the museum and the zoo and yoga and pottery, we watched movies and we played games, we played outside and we spent time with friends…we sucked the marrow out of each day, even as his marrow continued to fail him. But we did not fail him. Our doctors did not fail him. We did everything humanly possible from our end and I will always believe that our doctors did the same from their side, to the very best of their medical knowledge. And we still did not get what we wanted.
And I will never ever ever understand.

...So we face 2014...our first year without Sam.
I am paralyzed when I think of all that he will miss. I am overwhelmed and breathless when I imagine the future and he's just not there. Yet I know that we will awaken each day, and we will move forward, even if it feels like we're slogging through a thick fog, even if it feels like we're just moving for the sake of moving, even if it feels like we're faking every moment...we will keep going.

2014, here we come. Be gentle on us, please.

New Years' Eve - December 31, 2008

Bubble Baths and Turtle Space

Solly has been taking a lot of bubble baths. I'm spending a lot more time with him than I have in a long time, and he is a big fan of the bubble baths. Sam loved baths too.

I get to sit next to Sam's flowered shower curtain while Solly takes a bath.
I think about all the baths I sat through for Sam.
I think about all the bathtimes I might not have appreciated. Did I rush him? Did I rush through? Did I fully appreciate and enjoy each moment? I'm sure I often said, "hurry up" or "are you done yet?" Sam's last bath was in Orlando. He was skin and bones, and it hurt me to watch him climb in and out of the tub. But I sat with him and didn't rush him and I tried not to cry.

So there are bubble baths. They are like a balm to the soul, really.

Maybe you know that Sammy had a pet turtle.
His name is Speedy. He joined our family last year, right after Sam's treatment was complete.
I'm not a pet person. Turtles are a lot of work. At least they don't need to be walked on freezing cold mornings. But it's still a lot of work. Sam loved having a pet turtle. So it was okay.

In the few weeks at home between returning from RonMac and Sam's relapse, he spent a lot of time sitting in front of Speedy's habitat, trying to figure out what would get the turtle's attention. But for the most part, he's a turtle. So he didn't respond. Sam didn't stop trying. He was sure that Speedy likes red Legos better than blue ones. (Sam wasn't allowed to touch him, something crazy about a compromised immune system.)

Speedy went to a new home this week. No one really loved him here like Sammy did. Each morning, when I fed him his organic spring mix, I cried a little. I was ready, right away, to find Speedy a new home. He wasn't a sweet reminder, like the shower curtain. His presence was difficult and painful...the poor little creature.

I'm grateful to our friends (one of whom was a special pal to Sammy, so it's even better) who have given Speedy a new home, a home that already has a fish tank and a lot of love for a little turtle who just likes his purple lettuce leaves and (probably) doesn't know that his previous BFF has died.

But we know.

Speedy's space

 

There's an empty space in our living room where Speedy once dwelled.
It's nothing compared to the empty space in our lives....

The Silence in the Middle

There's a distinct quiet in the middle where Sam's voice used to be heard. Where Sammy would voice his opinion or lodge a complaint or request his turn is silent, a void unfilled by his sweet or sometimes cantankerous voice. There is the series of alarms for medicines now silenced and unnecessary after his death. I've erased them from my phone. There is the silence in the middle of the night where Sam's nighttime arguments would be fought in his dreams (ok, Solly sometimes picks up where Sam left off). 

While some of this silence adds a certain calm to our family, I feel it viscerally in my soul even if I can no longer hear the sounds I know aren't there. 

For our three other children it is as if the silence has set them loose as satellites slightly orbiting each other at a greater distance now. At twelve, David is embracing his independence. He buries his head in books that transport him far away from all this. He cocoons himself in his bedroom watching season after season of his favorite television shows on his iPad. He had eight full years with Sam and knew him the longest amongst our kids. He remembers the most and feels the most but intersperses his own silence with playful requests to be tickled viciously in order to feel youthful joy within our familial sadness. 

Yael is blossoming the most out from Sammy's shadow. Her voice has been heard (loud and clear from such a vocal baby) ever since she was born. But Sammy was louder. She learned from Sammy his battle cry of "that's not fair." He took up this cry from seeing perceived inequalities both above and below, sandwiched between David and Yael. Now, however, she uses the phrase less. She only has David to compare to and we do our best to remind her that there really is no "fair" ("especially without Sammy," whispered quietly in my mind, but never out loud). 

And finally Solly, who has spent half of his life acclimating to living without Sammy all the time he was in the hospital. Solly has never been quiet. Solly is the most vocal over his needs and wants. I mean, he's a toddler. Doesn't the world spin entirely around his axis? 

He has essentially been out of pre-school more than he has attended these last six weeks. He travelled to Israel and Orlando with us all and now is on winter break. Solly has never feared asking, yelling or screaming for what he wants. Of all the kids his voice often drove Sammy nuts, especially towards the end. Sammy couldn't believe how loud Solly was or how he usually got his way. In the end, Sammy loved Solly but had little patience for how Solly's own personal exhaustion manifested itself during our most recent trips. He showed this amidst the noise and chaos by ordering a last birthday present for Solly (with his own money) that he would never see arrive (Solly loved the viking helmet and How to Train Your Dragon two headed dragon immensely). Solly may never fully understand the silence that lives where he would have told stories to Sam.

After a death life moves on. We have three children who need our love, affection and attention constantly. They don't want to mourn quietly, sitting at home. Their grief is a more subtle entity in their lives than my grief as a parent. They want playdates, sleepovers, to go to the movies and trips to Target. They want noise. They fill the silence with their play, their laughter, their small arguments, their wants and their needs. They fill the silence with their living. 

In life there is nothing wrong with silence. In a good relationship, sitting quietly is comfortable. In our home, mourning the loss of Sam, the silence is often the places where Sam would have been heard. There is a lot of love in the noise of our home that pushes the silence in the middle back. But the sounds of Sam that are missing still hurt my ears the most. 

Thanksgiving 2012

Sammy, 2007

Birth...day

A few years ago, we spent my birthday in a hotel.

A hotel with an elevator.

The kids were fighting over who would get to push the buttons.

Over and over and over.

Each time we rode the elevator.

So on my birthday, I announced that for my birthday, the only gift I wanted was to be allowed to push the elevator button. All day long.

And it was granted. (Other parents reading this may understand the fullness of the joy of this gift.)

The next day, we got into the elevator. I reached for the button, clearly forgetting that my birthday was over.

Sam pushed my hand away and disdainfully said, "It's not your birthday anymore, mom. I get to push the button now."

Favorite birthday memory ever.

My birthday is on Saturday.*

I think most of my mama friends would tell you that our birthdays tend to be less of a big deal than our kids' birthdays. Okay, maybe that's just in my house. But that's just how it is. My birthday is always at the end of a long string of family birthdays…I don't mind. I am not one of those people who dreads getting older, and I like the general fun of having the whole world wish me a happy birthday. 

But this year?

Oh my. I'm not ready. I'm not interested.

It's hard to believe that I'm going to be one year older.

And Sam never will.

I am going to be 37 years old. And then 38…and 39…and continue on (God willing).

And Sam will remain forever 8 years old.

Forever.

How is that possible? How can it be?

I've been scared for my birthday. How will it feel to have people say "happy birthday" when I'm really quite far from happy? Is a birthday one of those things that if you skip it for one year you can skip it for good? Will I want to celebrate my birthday someday again? It's not that I don't want to get older…I am so very aware of the beauty and blessing of each minute, each day, each year of living…I just don't have it in me to celebrate….

*A whole different post, a whole different conversation -- a birthday on Shabbat is so nice and quiet, but the Facebook notifications pile up, don't they? And also there's the whole thing about Sam's death ON Shabbat…changing it forever for me. But these are fragments of thoughts I've had…

In Solly's Head

Solly, in the bathtub: Mommy! Let's play "dead" like Sammy!

He's 3 years old.

"Dead" means Mufasa, who falls to the ground and doesn't wake up but reappears in the sky later in the movie.

"Dead" means your character in Jetpack Joyride crashes and burns and then reappears for the next round. 

"Dead" means an iPad out of charge that works after you've plug it in. 

And "dead" means Sammy. 

Processing my own grief is hard enough.
What do you mean he's never coming back? I keep counting heads. 

But for Solly? Unfathomable. 

He's never really known life without a hospital as part of it. He was only 15 months old when Sam was first diagnosed. He's never known life "before" cancer. Those few short months of remission from last November til March? Even I have trouble remembering them. How can I expect him to do so?

But I don't want Sammy's words to become true:

Solly's not going to remember me. 

So when he says Sammy's name, when he wants to look at pictures, when he talks about his brothers...I encourage him. I keep the conversation going. I ask questions and I don't shush him. 

I think I just want to talk about him too. 

And P.S., so much of Solly is just like Sammy. I hear his voice...and the names of the dinosaurs that just trip off his little tongue...

Solly, with the gifts that Sammy selected for him for his birthday...right before he died. The gifts arrived after Sammy died.

Sammy, August 2007, in the bathtub

February 2012 - Sammy and Solly sharing a smoothie

Displaced

Back in July of 2012, we were just getting used to Sam's treatment.
He spent almost all of June in the hospital, came home at the end of his first round of chemo for almost two weeks, and then went back into the hospital.

Back then I wrote this:

You know, six weeks ago we came to the hospital for the first time. Six weeks ago, this was a totally foreign place. Everything was new and uncomfortable. Our walls were bare. We had no idea what to expect. We didn't know how to handle things. We didn't know what to do. Sam was a wreck. He hated every minute of it. He hated his pole. He hated walking around. He hated every nurse and doctor and whatever-medical-professional who walked in the door.
And so did I.
Six weeks ago, walking into the synagogue felt like walking into home. When I went there on Friday...it felt odd. Strange. Foreign.

Obviously, Sam's funeral was held at the synagogue, and we observed three nights of shiva there as well. It's not like we haven't been there throughout all of this nightmare.

But on Friday night we went to Shabbat services.

And it was so very very hard.

It felt, to quote myself, odd…strange…foreign.

Perhaps it was because I'm relatively unused to being a "Jew in the pew"…and perhaps it was because our  Shabbat has been so home-based in the last few months (my kids are definitely out of practice in the attending-services department). It wasn't because the service is different (not that much), it wasn't because the sanctuary has changed (it hasn't) or the people were unusual (a lovely crowd who gave me hugs and love)…

Oh, and perhaps it's because I just miss Sam.

I felt uncomfortable, displaced, and out of sorts…like I no longer belong in my own skin.

And uncomfortable, displaced, and out of sorts are pretty common feelings for me right now. For all of us, I think. We are feeling our way through this new sense of our family. Who are we? Where do we all fit into this new order of things? How do we work around the hole in our family and how do we pick our way through whatever minefields we might stumble upon? We are used to putting Sammy's needs at the top of our list, we are used to timing and scheduling around clinic visits and medicine doses. We are used to choosing our meals based on his palate, which grew more and more limited. And now....?

I will admit, I'm nervous to go out. Staying home feels quiet and safe. The world feels harsh and bright and full of a cheerfulness that I'm not ready to muster.  But I can't stay here forever and I've already told Solly that I would take him to the dinosaur museum...an outing that will most certainly be full of Sam-ness. 

It's only been one week since we last saw him, touched him, talked with him…

I never wrote the story of our photo shoot the day before we left for Israel. We used the synagogue as a space, since the weather was iffy. I never imagined photos in the sanctuary, though, just a use of the nice bright rooms and courtyard. Sam had other ideas and insisted on photos on the bima. My fearsome foursome…(with thanks to Martha Abelson for this picture)

September 2011 -- all dressed up for Rosh HaShanah -- he called these his "handsome clothes"

Distracted

I'm constantly distracted. I start one task and then jump to another. I compose a blog post in my head and it is lost a few minutes later. I go to get something for one child and I end up with another thing in my hand. I start a sentence and I trail off…perhaps I have forgotten how to think, how to breathe, how to write…? I have started and restarted this post so many times...

Remembering…Sammy and Solly at OSRUI

The silence in the room when we walked into the funeral was thick. It was breathtaking. It was filled with pain. I could hear the collective breath…

The snow fell on Sammy's grave and the edges softened…so many shovelfuls...

The room of shiva was never empty...The hugs were never ending. The love was palpable.

I hugged small children. So many of Sammy's friends.
I hugged 8 year olds and consoled them on the death of their friend.
I kissed their sweet little heads and I told them how much Sammy loved them.
I remembered birthday parties and playdates and excursions.
I saw their parents' eyes filled with the pain of knowing that their children will never forget this moment when their little people became mourners.

I hugged teenagers.
So many teenagers.
They feel the pain of death so keenly at that age.
They believe they are immortal -- this cuts them to the core.
I have seen teenagers in grief and it is heart-shaking.
But I felt such a swell of pride in my heart as each of them embraced me.
These are the students we have taught, we have taught them oh-so-well to love and care and bring comfort.

I have never felt such shared grief before. We are all mourners, such deep sadness.
And yet I am the one who types this at 2am, in a house that has one child missing.
Thank God for all of you, God's Messengers on earth who hold me up.

I can't keep up with the messages and emails and texts.
I am overwhelmed with them.
I think it is in a good way.
I scroll through my Facebook feed, my email, my texts... and cry.
My friends, my sweet wonderful friends, who are doing what they do best.
Writing…sharing…posting….and of course, fundraising.
So many posts.
Articles….oh, so many articles.
(Would a good mother keep a scrapbook? A good blogger might have a list of links.)
Sammy is famous.
I can think of a hundred million billion other ways I would have wanted it to happen.

I can begin to understand the hair-ripping mourning custom of ancient days. Outwardly, I look the same. I am not shaving my head* until March. I think that will be the right time. I know I need to wait. (It's also very very cold…)

But there's a piece of me that wishes I was doing it right now.
Today. A huge, painful, visible change…many years ago I gave a sermon about perfectionism. I started out by talking about Yael's head-lice, and how I had shaved her head (and Sam's too, by the way). I said something like, "she is now a bouncing, giggling, bald reminder that we are very far from perfect."

Oh, how far from perfect we are...
Oh, how far from complete.

So this is what it feels like…

*That link is to Michael's St. Baldricks donation page…just to balance out the fundraising…#baldestparentsontheblock - we feel equally helpless…

Remembering…September 2008…the headlice shaving incident

Loss of Fear

I stopped writing months ago. We were home. We were always together. There wasn't a rotation of who was caring for Sam so there wasn't a rotation of the keyboard. I never stopped writing in my head, I just had enough strength to focus my attention on caring for Sam and the rest of the family. I knew Phyllis could say it for us all. I trusted her words to speak for me too. The weeks and months were challenging, all living in Milwaukee and all living at home. So many people made it possible to breathe.

Between the fluids and all the pills and the level of attention that was needed I wasn't sure I could keep it all straight (I am not a medical professional for some very strong reasons).

So I stopped writing. Time was incremental. The end of the day when all the kids were tucked in for a night was a time when the entire care team at home would just crumble onto the couch, watch a lot of television and pray that everyone slept well through the night. Sometimes our prayers were answered, sometimes not so much. I barely had strength to think let alone take a turn typing.

This is what I wrote Sunday night and wanted to say if I had stood up yesterday and spoke at Sam's funeral. I trusted Rabbi Lowenstein to say it all. I felt Phyllis and my kids needed me more.

For 18 months I feared that my hands were never clean enough to be near Sam, that my runny nose wasn't just allergies, but was something that would force me to stay away from my Sam for an unforgivable week or more. I feared every bath, that I hadn't prepared him well enough, that dirty water would reach his central or picc line and complicate matters beyond our control. I feared that his chemotherapy would kill him, taking out his heart, a kidney or his liver. When he was microwaved, like leftover mac-n-cheese, for three days in a row in preparation for his bone marrow transplant, I watched and dreaded the cataracts the radiation would have caused if he had reached sixteen. For 18 months I lived in fear that I would somehow contribute to the cause of Sam's death.

I breathe can breathe a lot easier now. I cry a lot, but I no longer fear that my care won't be enough. The worst has happened. Somehow beyond our wildest dreams we did everything right and yet Sam still died. And yet he is no longer in pain, he is no longer furious at the world and thinking that God hates him. He is gone, hopefully at peace, knowing how much we all loved him and will always love him.

I cry for all I miss. I cry for all Sam will miss. I cry for the loss my other children have suffered. I cry for the hole in my wife's spirit. I cry for the insanity, the injustice. I cry for all the things I can remember and all the things I can't remember. I laugh at who Sam used to be and the short films or pictures this friend or that friend bring to me and share with me. I laugh at private jokes David and I have been collecting for the last several months. I laugh when Solomon says something way above his pay grade and age and when Yael is being silly. I may not always have tears because often they are flowing on the inside.

Sam was an amazing child. He was the best baby in the world. So much so that Yael was born 16 months later so that someone could share in how amazing a baby Sam was. Sam's smile always lit up any room he was in. Sam's laughter was contagious and caught anyone present up in the fun he was having. Everyone who knew Sam loved Sam no matter whether he was having a good day or a bad day. Sam embodied love even if he hated being kissed all the time, hugged all the time or touched often. And yet the secret was if you let Sam approach you he was the most huggy, kissy, affectionate child around. He just wanted it all on his terms. The deeper secret is that Sam let me hug and kiss him whenever I wanted. I was his person. I spent six of his eight years staying home and taking care of him and then Yael and him together.

Of course during his terrible threes and furious fours we nearly killed each other. There were days I wasn't sure either of us would make it through them. But somehow no matter how much we yelled or fought, at the end of the day I wanted to convey to Sam how much I loved him and would always love him no matter what. I wanted each day to end with a moment of peace and an "I love you" on our lips. So at the end of each day I would lay in bed with Sam pressed tightly against me. I began making up stories without reading from books so that he could rest in my arms without them being occupied. I made up several songs with him as the central character in the song so that he could hear his name sang lovingly in my voice at the end of each day. We ended each day peacefully snuggled gently against each other so that he always knew I loved him. And when we finished I would always try to give him close to a hundred kisses on the top of his head so he knew I never really wanted to stop kissing him. My secret goal was to someday have planted ten thousands kisses on his little head.

For 18 months I only ever kissed Sam on his head fearful of what my germs would do to his compromised system. Even up to the end I would only plant kisses on his cute, little bald head when I put him to bed. He said to David last Wednesday or Thursday night: "David, Dad's kisses on a bald head are the best. You gotta try this sometime."

Sam was always an amazing kid. He hated being in the middle. His four-letter word was "fair" because life wasn't fair. But he was always an amazing kid who taught us something every day he was alive. He will be missed by everyone who knew him and even those who never got the chance. He was like a Sabra (Hebrew for Prickly Pear), warm soft love embodied in the center of the prickliest fruit.
I will miss hime forever. May his name always be a blessing.

What I'm Missing

On Friday morning, Sam woke up with a headache and nausea. He was vomiting a little, and we weren't quite sure what the dark spots in his vomit were. But I had a terrible feeling.

We were scheduled for a trip to the clinic, and, frankly, we weren't ready to imagine what it would be like without that trip. Giving up that trip, to me, meant we were ready to admit how very close we were to the end. Giving up that trip wasn't really an option. Even Sam wanted to go.

So we made the drive. (It's an hour and 15 minutes.)

About 15 minutes out from the hospital, he started to vomit…it was dark and bloody.

He never really spoke to us again. 

The incredible sensitivity and efficiency of the clinic staff was remarkable. I felt as though we were the only patients in the place. Did anyone else get any attention at all yesterday? The care and love were palpable. They knew what this meant.

"Our goal today is to get you home."
Dr. M spoke those words and I nearly collapsed inside.
How would we manage this? What were we doing? How could it be?

But they were patient and kind. They were quiet and gentle. They spoke about comfort and care and how to make him feel no pain.

Sammy received platelets, a palliative measure. He received a fluid-reduction medicine to alleviate the pressure on his heart. A little oxygen. A little morphine. Some of our favorite hospital staff members stopped by, knocked quietly, and gave us hugs. They whispered their love to our sleeping boy.

An ambulance ride was arranged to bring us home. He was comfortable and peaceful on the ride. I can only imagine what a car trip would have been like. I am so grateful we were spared that fear and anxiety. I am truly grateful we made the trip on Friday. It allowed our beautiful team to help us give our son the most peaceful final hours we could arrange.

We arrived home in the late afternoon and began as many calm and quiet palliative measures as we could. A morphine drip. An oxygen tank. His most purposeful movement was to pull off the mask as soon as we put it on him. So we turned up the force and set it next to him. "Blow-by," they called it. A little comfort. He was breathing and resting easily.

The house filled up with family and loved ones. Sam slept quietly through it all.
Our kiddush wine was salty with tears.

The hour grew late…the house emptied out.

Around midnight, the last ones left. I took the first shift and sent Michael up to sleep.
I quietly sat down next to him and very very very softly sang his bedtime prayers.

Shelter us beneath thy wings….guard us from all harmful things.

He was always terribly impatient with me when I would cry during these prayers.
So I made sure not to cry.

Shema Yisrael Adonai Eloheinu Adonai Echad...

I whispered in his ear….I love you.

And then I settled down beside him on the couch, my hand on his back. Only a few minutes went by.

His breathing began to change. There were long pauses between the breaths. I caught myself holding my breath and the nurse and I exchanged a momentarily-frightened glance. We turned on the lights, we got Michael from upstairs.

We held our child close.

He took one final breath…

Sam was not alone for a single moment of his life.
He died peacefully and calmly and quietly at 12:33am.
He was not in fear or in pain.
And for that I am eternally grateful.

For the first 10,543 days of my life, I was not Sammy's mother.

And then I had 2,959 days of Sam.

Now I face thousands of days without him.

I once lived 10,543 days without him.

But I didn't know what I was missing.

(With gratitude to Martha Abelson for the beautiful photographs, 

taken just a few days after Sam's relapse.)

For sweet words and funeral information, see this post from our dear friend Rebecca.

How Are You

I get this question a lot.

How are you?

How can I be?

How should I be?

How do I answer?

It isn't that I want people to stop asking. I'm not telling people to go away. 

I just don't know how to answer this question. It is impossible. 

I am breathtakingly, heartbreakingly sad. I'm not even that angry right now...I'm simply sad. Desperately sad. 

I'm watching my son fade away. 

He's sleeping a lot. 

He can barely walk to the bathroom or upstairs. He hardly leaves the couch. He mostly rests his head on the pillow. He eats just a few bites at a time. 

He had some plans. He had ideas. Things he's come up with since he learned he is going to die.

He wants to record himself reading a book for Solly. 

He wants to design a t-shirt ("and make lots of money for tzedakah, mom, just like you!")

He wants to "write little notes and leave them all over the house for David and Yael and Solly to find. They will say things like 'I love you' and 'I miss you'."

He wants to write a book. 

Today he had a few moments of awakeful time and it was quiet in the house. I reminded him of this list. I offered to help with any of those items. Or none of them. 

He told me that he still wants to do those things. "But now I'm going to sleep, I'm so tired." 

We all leave behind a list of unfinished things. Books unread. Movies not seen. Tasks we haven't accomplished. Goals not met. Even a long and fully lived life is mourned as it comes to an end. 

But this? I can't even begin to enumerate what isn't done. I don't know how.

Tonight at bedtime he told me that he still wants to talk about the notes. He wants me to hide them around the house since he can't get around so well. "Let's talk about it in the afternoon, maybe I'll be more awake," he said.

But even with all of this…he is pulling away. He doesn't want to be around anyone. He's not really chatting, he doesn't like a lot of noise or a big crowd. Our normally busy and full house is almost too much for him. I'd like to imagine sweet long talks between Sam and his siblings but the truth is that he is pulling away from them, retreating into himself…so "normal" but so horribly, terribly, gut-wrenchingly painful to be a part of.

How am I?
I just don't know.

Today Sam had a playmate. Sam watched his friend play for a bit, there was a little talking, and then they sat together and watched a movie. They both loved it.

I keep scrolling back through old pictures. This is from June of 2009…4 year old Sammy.

Not Your Fault

Dear SuperMensch,

Thank you.
Thank you for your selfless act of hope and belief and future.
Thank you for giving us 77 wonderful days of hope and blessing.

It's not your fault that it didn't work.

It's really not. I can't imagine how it must feel to know that you made this selfless donation...and it didn't work. So I want you to know that it's not your fault. Once the marrow left you....it just wasn't up to you any more. You did your part…you joined the registry and you answered the call. We are so very grateful.

Your supermarrow was just no match for Sam's ninja leukemia, which has mutated and changed to defeat even your miraculous gift.

We can't control life and death.
Even the doctors know that. They tell me that.
But we can, as a wise person told me, control the journey.

We have made the decision to give Sam a journey that is filled with love and light.
The fact that he hates the hospital with a fiery passion is reason enough to keep him in our home as long as possible, and to not take on options that require hospitalization. The fact that our doctors have turned over every stone means that we are not taking on any of the obscure, difficult, painful, and unlikely-to-do-much treatment ideas that have been so kindly and lovingly suggested to us. The fact that we are out of options is a fact that we live with each day. And sadly, our medical team feels much the same way. They hate this just as much as we do. We now use words like palliative care and hospice. There is such pain in these decisions that we know are, ultimately, the most loving and caring we can make. We know our time is growing short...

And so, our dear friend SuperMensch, we thank you for these minutes and hours that we continue to cherish.
We send you blessings and love and strength. 

With love,

Sammy's family

Here are a few scenes from the last two days…noticing that Sam has not really left the couch, except for a slightly traumatic trip to the hospital for a new PICC line...

Discussing what kind of spaghetti he wants Bubbie to make:

A sweet bright spot in a very sleepy day - Sammy watching a private magic show. Thank you to the anonymous person who set it up and to Randy Bernstein for the lovely moments. He slept almost all the rest of the day...

Daddy is helping Sam to choose a birthday present for Solly. Sam had a plan in mind, and he fully expected to go to Target to acquire the gift. Instead, he chose it online. I am completely blown away by his brief moments of clarity and generosity, thinking of the future for his siblings. 

100 Days

Yesterday was +100. One hundred days post-transplant. 

It was the last day of Chanukah. At some point I wrote all the + days on our calendar and I knew that today, day +100, would fall on the last day of the holiday. I thought it was a good sign. 

One hundred days is a transplant milestone. Today it doesn't feel like one. It seems like a lifetime ago that we started with such hope, such readiness for a future with new life inside our son. We knew that it could be rocky. We knew that the conditions for transplant weren't "ideal." We knew what could happen. 

But I don't think we believed it. 

And now, 100 days...it's not the celebration that I imagined. There's no 100 Day candles or cake or donuts or ...whatever one does to celebrate a milestone like this. 

But there's still this:

And for now that's what we have. 

Wishes

If you will recall, we spent a magical 36 hours in the Magic Kingdom in August. It was right before the transplant. Sam was feeling really really good. Our spirits were high. 

There was a very quiet cloud over that trip. We didn't speak about the dangers of the transplant to the kids. We didn't voice our deep worry -- would this be our last trip together?

Well...it wasn't our last trip. But it was the last one like that. 

When Sam asked to go back to Disney, I know that what he was really asking for was a rewind back to that August day when he felt so well, so strong, so full of hope. 

There's magic here for sure. 

But not the kind that can turn back clocks. And so this trip is so very different and so very difficult. 

Sam is weak and uncomfortable. He's so thin I can see every bone -- even sitting in a wheelchair becomes uncomfortable after a little while. His intensely high expectations are often not met and he has developed some odd fixations that are exacerbated by his emotional state. He wants things to be perfect-- and of course they are not. It's so difficult to manage the expectations of a "normal" 8 year old...how to manage them now? We are constantly stymied and saddened. 

However, there are bright spots and we cherish them (and photograph for posterity of course!) as they come...

Hogwarts Express...

Choosing a wand....he chose You-Know-Who's wand so he's making an evil face:

Catching a lizard - these guys are everywhere!

Winning an arcade game!

Touching a shark!

A glimmer of Sam-ness came through when he wanted to do crayon rubbings of the hotel lobby floor (we had seen others doing this, and it seems like a thing here). Our friend Jason sat down next to him and met the real Sam...for just a few moments. Because he's truly not himself. He doesn't talk a lot, and he doesn't share much of how he's feeling. He doesn't want to meet new people or even talk much with the ones he knows and loves. But every so often we see his light shine through. 

And so we continue on, seeking the light, finding the fleeting moments of joy. 

(Lighting candles on the balcony of our room)

--

There are some incredible things going on right now in Sam's honor. I'm writing from my phone so I can't get all the links together for you but there are some amazing fundraising efforts going on to help in the fight against childhood cancer.  Links available on my Facebook page (which I think is public enough or you can just friend me). All I can say is "wow" and "thanks" -- two of my favorite prayer words. When I return home I will find the words to properly thank the Make A Wish organization, our Wish Granters, and everyone who helped to make this trip possible. Until then -- again, I will just say "wow" and "thanks." 💜

Fighting

Every moment is a fight.

A fight in the epic battle inside of Sam's body.

A fight in our epic battle to hold ourselves, our children, our family together.

A fight in our epic battle to maintain control…of whatever we can control.

Platelets and a few other tune-up meds - just a visit, not an overnight stay

It was a conversation about horrible things. Do not resuscitate orders and end of life care.

We're going to be traveling out of the state. 

"I can't be in control at another hospital," the doctor explained to me. He can talk and explain, he can use his connections and his stature to convince an out-of-town doctor of our wishes. But he doesn't have control there.

I replayed the conversation later in my mind and I found myself laughing somewhat uncontrollably.

Control.

As if any of us have it.

Are we keeping the leukemia from growing out of control? 

At the moment, yes. We are keeping it quiet. It is unchanged from a few days ago…so we think. So what can we control: How do the medicines make Sam feel? What is the minimal dose we can give him to keep him comfortable, happy, and also awake and content? Which poison will hurt only the leukemia and keep his other stuff working just right? When will it rear its ugly head and run us over? 

It's like a boxing match -- what's the famous phrase? Float like a butterfly and sting like a bee….

A few jabs over here from a chemo pill.

The body sends back a nap and a vomit.

A few jabs over there from a steroid.

The body sends back a rash and a pain.

It's a different game. The rules have changed. The goals have changed.

We don't talk about long-term effects of medicines. 

We talk about today, about tomorrow, about planning for a few minutes at the House of Mouse.

There is no long-term.

And yet….we're not done.

It's not over.

We don't plan for death, we don't welcome it. 

We don't talk about it each and every moment.

But I catch my breath when I see him playing charades with his sibs and cousins and wonder when it will happen again.

I suppress my pain when he tells me to "leave me alone." Oh, Sam...

I drop everything when he asks me to sit with him and read. Until I'm hoarse if he wants.

And yet…we're not done.

We still ask him to say please and thank you. 

We aren't done parenting him yet.

We aren't done trying to find the magic, the wonder, the light.

"I am not going to be happy any more," he told me. 

"It's okay to have fun," I told him. "Even if you're sad inside, it's okay to also have fun and smile and be….even if you're super sad and angry and upset on the inside. You're allowed."

Fireworks lit up the sky last night. Sam was physically uncomfortable and feeling fragile, even though he was only surrounded by his inner circle. But the lights lit up the sky and he watched…transfixed. For a few moments transported away. And for the rest of us? They lit up our souls. I will never see fireworks again without thinking of this night, when our community came together to illuminate the love for a little boy and his family…thank you. 

Fireworks….on the fourth of July they remind us of the "rockets' red glare" that helped forge our nation, of the epic battles that were fought for freedom.

Fireworks…now they will forever remind me of the spark that is our Sam...

Watching fireworks…Chanukah candles burning behind him

Not a day goes by that we don't hear about another treatment.

Another drug.

Another place with an incredible story.

Believe us when we say that we have left no stone unturned. We have tried them all.

We fight now for comfort and time.

We fight for more of this...

The Shower Curtain

The other day, Sam and I were driving in a car with my mom and dad. They mentioned that they were planning to go to a particular store, and I said, "oh! I need a new shower curtain! Can you pick one up for me?"

Then we discussed what kind I wanted. I like the plain, clear ones. Makes the bathroom look bigger.

Sam piped up: "why do we always have a clear shower curtain?"

I explained why I liked it (seriously? why does an 8 year old care about the shower curtain?) and he said, "well, I think we should get one with flowers on it." (It might have been the World's Longest Conversation Ever About Shower Curtains)

Really? Flowers?

"Really, mom. Flowers."

So guess what we got?
Yep, a flowered shower curtain. Our first one ever.

So why is this remarkable? Why am I writing about this incredibly mundane purchase?

I put it up last night. I took a shower this morning. It is different, it is unusual.

It makes me think of Sam.
It makes me think of what it's going to be like when he's not here.

I know that I'm trying desperately to live in the now, in the moment, in the I-have-him-and-I-should-focus-on-that.

But it's hard, oh-so-hard, not to imagine what it's going to be like.

Every time I look at the shower curtain.

We Have Plans

It's hard to know what to expect.
Sam is feeling okay. A little tired, happy to sit at home and watch movies or television.
A trip to the arcade.
Back to the go-karting place.

The labs don't say "okay."
Elevated white count.
Considerable peripheral leukemic blasts.
Low platelets.

So we tanked him up with platelets.
Added a new drug to the cocktail.

He has plans:
Roller coasters.
Swimming.
Trampolines.

Sam shared his plans with Dr. M, who is going to help us keep him moving forward with them.

Our goal is to take care of him.
Our goal is to keep him comfortable.
We're looking for a quality of life that allows him to look ahead, that allows him to make plans.

It's not perfect.
It's so very far from perfect.
It's, in fact, the farthest farthest farthest point away from perfect I could ever imagine.

But it's what we have.
Making each day count.

We have plans.

From Tante's Perspective

From Phyllis: We've always believed that the more people who are around to love our kids, the better. "Tante" (Auntie) Anne wrote these reflections after our trip to Israel together. Some of the funnier grown-up moments came when we tried to explain to El Al and Israeli security how we were all connected to each other….

by Anne Persin

"Do you know what's happening?" Sam asked me the day he found out.
"You are very sick." I answered.
"I'm not sick. I'm going to die."

How do we support an 8 year old who is dying without a. pretending everything is fine - just stay on the sunny side! or b. giving in to the depression that is trying desperately to pull us all in? We have all been walking this line - at different times favoring one side or the other - hoping that experiences, the making of memories, could help us all through. Sometimes it works better than other times.

12 of us just spent a week together in Israel. Sammy had said over and over again how much he wanted to go.
He was told: the flight is going to be crazy long. He still wanted to go.
He was told: it's going to be very tiring. He still wanted to go.
He was told: the food is going to be really different. He still wanted to go.
So we went. Then, halfway through flying there, Sammy got a rash. A really bad rash all over his body. He was overheated. He was uncomfortable. He was miserable. It took sooooo long to get there. Everything was sooooo exhausting. And the food - blech. This dream trip to offer Sammy the chance to experience one of the few things that he really wanted to do before he dies was looking like a horrible failure.

[Before I continue, I must say, thank you, thank you, thank you to our guide, Uri Feinberg. His warmth and patience, flexibility and care made our trip 1000 times more wonderful then it ever would have been without him.]

Wednesday was a little bit better. We went to the Biblical Zoo in Jerusalem and fed the elephants and the giraffes and the zebras - it was awesome and Sammy got into it but it was just for a moment, it seemed. In the afternoon he was back to being tired, angry, and miserable.Thursday, on our way out of Jerusalem, we went to the Jerusalem Bird Observatory; and little bits of the silly Sammy that we all know and love started to peek through. He walked a little bit more instead of relying on his wheelchair. He talked a little bit more instead of disconnecting to the people around him. He let birds fly, looked for frogs, pointed out turtles.

But it was Friday - our last day in Israel - when he finally started to open up to being there, in Israel, with us. He ate. He went to the beach. He talked to us - not about how miserable he felt but about memories and fishing bait and airplanes. He gave opinions about nicknames and pipe cleaner creations and sand. It wasn't a perfect day, by far, but it was a day where he didn't spend the majority of his energy angry with God and the world around him.

You see, we all walk the line between pretending everything is fine and swimming in the abyss - even Sam. Lately, a lot of his days have been pretty dark, with good reason. That last day in Israel, I could see a balance in him. He was ever aware of his reality: he is going to die. But on that day, he also took some time to live.

Throughout the trip, adults were constantly asking Sam, "what can I do for you?"
"Can I do anything for you?"
"Can I amuse you in some way?"
"Can I wheel you closer to get a better view?"
"Can I buy you something? Hold something for you? Get you something to eat? To drink?"

In the airport, on the way home, I must have asked him a dozen of these kind of questions when:

"I know something you can do for me... You can give me your life."

"Sam, if I could, I would in a heartbeat."

I had to turn away before I started to cry.

Three grandparents, two uncles, one tante, two parents and four children make a trip to Israel…(pictured here with Speedy the helicopter pilot)

Family On A Journey

What was our goal for taking Sam to Israel?

Let me rephrase that sentence.

What was our goal for taking our whole family to Israel?

To create memories together, as a family, in a place that we (the parents) love. To deeply embed in our children (all of them) a collective remembrance on the subconscious level. To add to the canon of our family's story with tales that can be told and retold until their memory becomes softened around the edges and sweetened with the flavor of memory.

I do believe that we did that.

Sam was a lot like a homesick camper who can't quite get comfortable. That camper who has fun during swimming or sports but immediately tells you how miserable he is afterwards. That camper who, if caught smiling or laughing, might send you a scowl just to remind you that he plans to continue to be homesick even if he's having fun sometimes. And in retrospect, this is so typically Sam. (Please remember, he really and truly did not feel well for most of this trip. The not-quite-sure-if-it-was-chemo-or-GVH rash was uncomfortable and itchy for most of the trip. The pain in his ankle that only started to go away by Thursday kept him from walking too much. And wow, were those changes fast.)

We scrapped most of the schedule and replaced it with "go-with-the-flow" moments that filled us up with Israel and Sam-ness.

Buying the biggest shofar he could find

Feeding elephants at the Biblical Zoo

Releasing birds at the Jerusalem Bird Observatory

Fishing in Jaffa Port (one of my favorite moments because this kind Israeli man just let Sam use his fishing pole)

Helicoper ride over the coast of Israel….in full disclosure -- I (Mom) kept my feet on the earth.

Playing on the shores of the Mediterranean Sea (try teaching Solly to say that)

My children will carry this memory of their very first time in Israel deep in their souls. They will always hold this as a place that they experienced together as a foursome. When they visit again, when they study there, when we talk about Israel at home -- they will feel the presence of our whole family. This is the accomplishment of our goal.

It was hard, oh so hard, but I do believe that we made the right choice to take this journey in the midst of our bigger one.

We have so many people to thank for this journey, and it's hard to write everyone down -- so if I forgot to include you, please know it is from my own error (and probably jet lag) and not because we are unappreciative of what you have done for us! 

Our intense and full gratitude...
To Rabbi Steven Lowenstein and the entire community of Am Shalom who made it possible for this trip to happen.
To Uri Feinberg and the entire staff of Da'at who went above and beyond to give our family this experience. (And to Meryl for the challah!)
To the hotel staffs at the David Citadel and the Carlton hotels who delivered milk at all hours of the day and high-fived Solly at breakfast each morning.
To Jessica at USAirways, who rebooked us on Sunday from our original tickets to the different-airline's flights that got us all the way to Israel (it was quite an ordeal for her and for us but without her, we might not have made it at all).
To everyone in the US and Israel who sent us messages with ideas and suggestions for improving and adding onto the trip, or had fruit or sweets (who knew that Marzipan Bakery's rugelach could be delivered!?) sent to us, or left us kind and lovely offers of their own resources and even their own homes.
To Dr. M and his team who spent a lot of time texting and talking about ways to make Sam more comfortable from so far away and checked in on us at all hours of the day and night.
To our dear friends at home who took care of our house and turtle.
To Uncle Josh and Uncle Harry and Tante Anne who helped shepherd our children and share our pain and love.
To Bubbie and Zeyde and Grandma who trooped along with us and held back their tears as best they could.
To all of you who followed our journey and continue to follow what we do…

Thank you.