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.