Sharing

Sometimes cool things happen.
And I wish we could share them with Sammy.
I mean the kind of cool things that I want to turn to him and show him, or look for him to tell him the story, or have him try that new thing because his sister loved doing it so he probably would like it too.

Sometimes funny things happen.
And I wish we could share them with Sammy.
I wonder how he would laugh or giggle or maybe scowl because he didn't find them funny at all.
Sometimes it's a funny thing that Solly does and I wonder if Sam would find it cute or irritating. I wouldn't care if it was either one.

Sometimes sad things happen.
And I wish we could share them with Sammy.
Maybe a friend got sick, or we find out about yet another kid with cancer.
Or someone died. I know it might seem strange, but I even want to share those things with him.

It happens so often...I turn to tell him something.
I walk down the street and imagine holding his hand.
It's not just the cool or funny or sad things.
It's everything.

Yale wanted to "hold the sun" and it came out so cool....I know Sam would have loved this idea.

On Our Minds

There are so many things that make me think of Sammy....okay, that's not quite an accurate statement. Nearly everything makes me think of Sammy.

But it's amazing to me how much Sammy is on Yael's mind, in particular. 

(Solly too -- but that's a different blog post)

Today we were at the Kinneret Cemetery, a simply beautiful spot overlooking the Sea of Galilee filled with the graves of the earliest pioneers of Israel. We invited all of the participants to write a poem or other reflection...and here's what Yael wrote:

Nature

There are a lot of trees of there in the nature. 

When I am in nature I think of Sam. That is what I think in nature.

Always on our minds, in our hearts....

Presence

How is it that Sammy is everywhere in this place that he hardly was?
We are back in Israel, without him. But yet, he is in everything that we do.
Each place we go, we remember being here with Sam.
Or not. Tomorrow we will go to a place he's never been, and we will talk about how much he would have loved it. (Or possibly hated it....I suppose with Sammy you never really did know what you were going to get....)

How is it that I think of him with each step here?
I think of him all the time, every day, every breath. But his presence sings out to me here.
Here in this land, the one in which he barely spent a week.

Yet I dreamt of him here. Sam became a reality here. This is the place in which I met Michael, where we fell in love. This is the place where our family began. And thus, this is where my dream of Sam (and all my children) truly began. It is here that the spark was kindled. Perhaps that is why he is so very present here.

The stones of this ancient land are saturated with the tears of our people....and also the tears of my family. Our journey last year was so very hard, so very full of love and laughter and so many tears.

Israel is my second home....the place I love....a place of sweet and lovely memories. 
Even the ones that bring me tears. Even the ones that leave an empty space in my heart.

Even here, he is with me to fill my heart and soul with his presence. 
Wherever I go, I carry my Sammy with me.

Wearing my turtle at the Kotel

"Mom, did you see the Superman! We have to take a picture!"

We re-attached some googly eyes that had gone astray over the last year....

Four letters in the word "love" in both English and Hebrew. Four children in our hearts forever....

Funeral

One year ago today.


Hard to believe. 

What I said about it: http://supermansamuel.blogspot.com/2013/12/distracted.html 

The only thing we can do now is work as hard as we can to make sure this kind of thing doesn't happen to any other family. Ever. Donations are still being matched as we work toward one million dollars. For Sammy. For so many others....

Day 366

A whole year has gone by. 

Now what?

Yesterday was hard. Very hard. 

But truthfully, it was just as hard as every day. And so is today. We've crossed the 365 day mark. 

It doesn't really mean anything, does it?

It's just a number. 

I feel as though it should mean something. 

But instead....I just wish he was here. 

366 days. 

We keep on swimming. 

We keep moving forward. 

We breathe and hope and pray and love. 

And count the days....and make each day count....

Year

Dear Sammy,

It's been a year.
A whole year since we last held you. A whole year since we heard your voice and your laugh.

The other day, Solly came into my room in the middle of the night. Something in the quality of his voice, I truly thought it was you when he asked me a question...I wish I could hear your voice just once more. I wish I'd asked you to make more videos for me.

A year has gone by, Sammy, and we've done so much to help the whole world remember you. So many of our friends and colleagues shaved their heads and each one of them did it because YOU inspired them. We've raised a lot of money for research, and we're definitely not done yet. I know that you would have been an amazing speaker and presenter at all of these events and for all of these organizations. I can only imagine how it would have felt to have been your entourage, bringing you, the featured speaker, up to the stage each time. I'm sure there are lots of kids who like mustaches, googly eyes, frogs and turtles, but I also know that there are lots of people who now think primarily of you, Sammy, when they see any one or combination of those things. You wanted to be famous, and I can think of a million-billion ways I would have rather helped to make it happen.

A year has gone by, and we have done "the first time without you" for so many things. Each milestone, each day that has passed on the calendar, each day moving farther and farther away from you and your physical presence in our lives. I don't think we'll ever get used to missing you, but I think that we're figuring out how to live each day without you here with us physically.

A year has gone by, and each and every day your siblings remind me of you so very much. I see children your size and I think about where you would be, what you would be doing. I hear of the accomplishments of your friends and I often turn to share that information with you....but you're not there to see the pictures. When Yael lost a tooth the other day, I couldn't help but think of how you would have reacted to the whole thing. Would you have helped her to continue to believe in the Tooth Fairy? Would you have burst her bubble? I'm not so sure!

We're leaving for Israel soon, Sammy, on the trip that inspired your request to go there last November. For so many years, we've talked about this Israel trip, about taking our whole family together. I even discussed it with Dr. M when we headed toward transplant...do you think that Sammy will be able to go to Israel next December, I asked him. It seemed so far in the future, and now we are here. It's not the trip that I imagined it would be, because you won't be there with us, but I am so incredibly grateful that we were able to have our "first family trip" to Israel with YOU last year. I know the trip was difficult and not what you hoped it would be. But for the now, for today, I am glad that I can say to your siblings and to ourselves, "remember when we were here with Sammy?"

On what would have been your 9th birthday, we served dinner at the Ronald McDonald House, a meal that you probably wouldn't have even eaten (chili! baked potatoes!), and on this day, the last day you breathed, we will do some of your favorite things. We're going to watch How To Train Your Dragon 2, and we're going to eat your favorite Indian curry for lunch. We don't need one specific day to remember you, but this day feels heavier, harder, sadder than all the rest. We'll hold hands and we'll snuggle on the couch with popcorn, and we'll all miss you together. We'll go to your grave, not because I think that you are there more than here (or anywhere), but because I think it might help us all to be in that place....

It's been a year and I can't quite wrap my brain around 365 days without you.
It's been a year and until you died I'd never spent more than 10 days apart from you.
It's been a year and I can't understand how we're going to do this all over again for years and years.
It's been a year and I wish you were here.

Oh, Sammy. It's never the same without you.
I miss you and love you every day.

Love,
Mom

P.S. I ordered a new shower curtain today and I made sure it was flowered.

since Sammy died....

Space

In Wednesday's yoga class came this instruction:
Stretch to the side and make a lot of space in your side body...
Fill that space with your breath...

There's a space in our family.
A space that is exactly the shape and size of Sammy.
We didn't make it, we didn't ask for it, but that's what we have.

A space.

There's a space in our family.
A wide, yawning, vast, cavernous hole...
Every day we work hard not to fall into it, not to dwell in the emptiness.

And yet it's not empty. It's a huge gaping hole, but it's not empty.
It's a space that we've filled with breath.
And light.
And air.
And love.
Lots and lots of love....as much as we can find.

Where we were a year ago....we didn't know how little time we had left.

The TimeHop app brings me to tears nearly every day....

Yael in Solly's new Toothless hat (How to Train Your Dragon, Sammy's favorite movie)

Three....filling the space....and you can see Sammy up over David's shoulder

Etched

This is the picture Yael drew last week:

I didn't know what to do.

Tears sprang to my eyes.
I try so hard not to scare her, or shame her, or force grief upon her.

"Where's Sammy?" I asked quietly.

"Oh....I just drew the people who are alive," she said.

It's inevitable, isn't it? There will be photographs taken without him.
Drawings of our family that don't have Sammy in them.
Events that he doesn't attend....

And then today, I was explaining to Solly and Yael that I was putting a toy away to save for their kids. "My first kid will be named Sam...or Samantha if it's a girl," Yael announced, with a sad smile.

"Cuz that was my brother's name!" Solly replied.

He's etched into our hearts.

With gratitude to Diamond Event Group Photography

The Last Ones

After a lot of thought, I finished all of the photo books from 2013.

The one of our Israel trip, through Thanksgiving of last year.

And then there was a book for all of December.

Yes, one book. For all of December. It was so hard to make. I included excerpts from our blog, a copy of Sammy's obituary, and photos of many of the condolence notes we received. So many notes and cards...I couldn't think of another way to preserve them, so I took pictures. (I'm sure you're not shocked.)

"Solly's not going to remember me," Sammy worried.

I know we won't page through this book on a regular basis. But whenever we want to, we can revisit that terrible month. Even the hardest parts. Solly will remember, of that I am certain. And when he is ready, he will be able to look at the pictures to help him hold onto those memories....

I included the hardest and saddest pictures -- the last ones that were ever taken of our Sammy.

The last ones.

It's such a horrible phrase...to know that there will never ever ever be another photograph of him, that his physical self is just...gone. Buried in the earth, a shell of his soul and spirit.

I thought this would be the hardest photo book I ever had to make.

But I think I was wrong.
Because now I have to continue on, and make the books from 2014.
Books that don't have new pictures of Sammy.

I think that will be even harder.

Dress-up

Did I tell you that Yael dressed up like Sammy for Halloween?

Yep. She did that.

It's not how she started -- she went to school dressed as a Power Ranger. Solly decided that he and Yael should both be Power Rangers and she went along with it. Solly also announced which Power Ranger Sammy would be. I nearly bought him a costume, Solly was so convincing.

But she came home from school and abandoned her pink costume.

She greeted me at the door.
"I'm dressed like Sammy!" she proudly announced.
"These are Sammy's pants and his sweatshirt and his hat!"

How does a mama say no?

She even made his faces.

This picture actually scares me a little bit -- how very much like him she looks. 

I catch my breath when she looks and acts just like him.

Now she's missing another tooth.
Time goes by.
Teeth fall out.
Hair gets cut.
Kids outgrow clothing.

And along the way we remember him.
We hold him close to our hearts.
But he won't ever wear another Halloween costume, or lose a tooth, or get his hair cut or outgrow another pair of pants....sometimes I think it is unfair to the other kids that each of their milestones is colored in my mind by his missing piece. I don't tell them that I think about him with each of their milestones, at least not all the time.

And then I realize that they are thinking of him too.

I told her that Sammy would NOT have worn a pink scarf....

Again?

December again?!
How did we get back here already?
I turned the calendar to December and I felt a catch in my throat.
How can it be nearly a year?
How can 365 long days have nearly passed us by?

A year ago we were at Disney at the beginning of December. It was such a hard trip because we knew...we knew...things were slipping fast. We put up a good front, we played and laughed. We saw friends and family. We trooped from park to park, hoping that one thing, anything, would give Sam what he so desperately sought...but it wasn't to be found. There was no turning back the clock and there was no changing what was to come.

December.

It's the darkest month, that's for sure.

How do you observe a Yahrzeit for your child?

Nothing about this is right.
And yet we will find our way...

A year ago....fireworks lit up the sky

We continue to work toward our goal of $1 million. Will you help us?

Pictures from our Make-A-Wish Trip to Florida.
Looking back I realized that I didn't share many of these....

He really wanted to swim. The water was too cold for him.

Sam's favorite part of Florida was the lizard population. 

Amazing swim-with-the-dolphins experience. (Solly wasn't old enough.)

Sam thought the water was too cold but he thought the dolphins were so cool.

The last picture I ever took of the Sommer Four all together.

Someday

Someday, maybe it will be on Thanksgiving, over carrot cake, my grandchildren are going to ask me about their Uncle Sammy.

"Bubbie, tell us again, what did Uncle Sammy die from?"

and when I say,

"Remember, it was called leukemia,"

they are going to look at me with astonishment.

"But kids don't even GET leukemia," they're going to say.

And I'm going to smile and tell them that they are right.

Someday.

https://www.stbaldricks.org/participants/mypage/660739/2014

Thanksgiving 2011

Thanksgiving 2012

Gratitude

I am grateful that the sun continues to shine.
Even when I might prefer to sit in darkness.

I am grateful that my children grow tall and strong.
Even when I might wish that time could stop.

I am grateful for family and friends around me.
Even when I might prefer to be alone in my sadness.

I am grateful for a table laden with food.
Even while I remember how he wasted away.

I am grateful for the laughter and delight of my children.
Even when I don't feel like laughing.

I am grateful for the opportunity to be grateful.
Even when I have to work hard to find it.

I am a naturally happy person. I am regularly asked, "and how are the kids?" and I respond, automatically but with sincerity and truth, "they're doing well, thank God." I lean toward the positive nearly all the time. I find the the light and the blessing in nearly everything. 

There is darkness here, surely.
But I lean toward the light.

As we continue on our journey to bring light to others, please consider a Thanksgiving gift to the St Baldrick's Foundation in honor of your blessings. All gifts are being matched by an anonymous family foundation with a goal of $1 million.

That's The Day

I mention an
upcoming date
out loud
"that's on December 2nd"

a meeting
an appointment
whatever

and
Solly says,
off-handedly,
but
with
total certainty,

"oh, that's the day
that Sammy
is coming back."

I wish I
could just
say
yes.

Prettiest of Views

A week or so before Sammy died, I was in the car with another adult and a bunch of kids.
The "cups" song came on the radio.

You know the one....

When I'm gone, 
when I'm gone,
you're gonna miss me when I'm gone.

The other adult and I caught the words of this song, and we exchanged a glance.
We were both in tears.

When I'm gone

When I'm gone
You're gonna miss me when I'm gone
You're gonna miss me by my hair
You're gonna miss me everywhere, oh
You're gonna miss me when I'm gone

This past weekend, we celebrated with our family and friends as David was called to the Torah as a Bar Mitzvah. It was a beautiful Shabbat, made even more beautiful by all of our loved ones who surrounded us. It was almost perfect, as I kept saying. Almost perfect.

Almost.

When I'm gone

When I'm gone
You're gonna miss me when I'm gone
You're gonna miss me by my walk
You're gonna miss me talk, oh
You're gonna miss me when I'm gone

When Yael got up to read her part, and lead a song, 
I broke a little. Her sweet voice, leading the whole congregation. 

It was at that moment that I felt, so deeply, Sammy's absence.
Why wasn't he singing with her?

When Solomon and Yael shared the honor of opening the ark and they stood near David as he held the Torah, I couldn't help wondering where Sammy was. Why wasn't he up there with them?

I got my ticket for the long way round

The one with the prettiest of views
It's got mountains
It's got rivers
It's got sights to give you shivers
But it sure would be prettier with you

It was a most remarkable and wonderful weekend. We celebrated, we laughed, we cried, we danced. Oh, how we danced. My first-born was called to the Torah as a Jewish adult. A milestone worthy of great blessing and delight. Our family and friends came from near and far to help us celebrate....and to cry with us. I can't have been the only one in the room who felt, so keenly, Sam's absence. I know that we all could feel it. We wore turtles in his honor, and I kept touching the one that was around my neck. Our tears flowed, yet we tried not to mar David's honor.

The view was truly the prettiest.

It would have been even more so with our missing Sam. 

How tall would Sammy have been? I didn't add a turtle to this picture because we're all wearing them. 

342 days since his last quiet breath...

A year ago we were in Israel. 

And two years ago we visited the HOT unit with a feeling of triumph.

-----

We are honored to announce that an anonymous family foundation has agreed to a matching donation to the 36 Rabbis’ Campaign for the St Baldricks Foundation, to fund the research that will mean so much to families like ours. This foundation has offered $165,000 in a matched donation to any new and increased gifts to the 36Rabbis campaign. Once we reach our part ($165,000), theirs will kick in and the 36Rabbis’ Campaign will be at ONE MILLION DOLLARS. Please help us out? https://www.stbaldricks.org/participants/mypage/660739/2014

*An increased gift is any additional gift from someone who has already given. I know so many of you have already donated, and I am so appreciative. Thank you.

Erase

In fairy tales and magical stories, there's always the memory spell. The one that takes away memories. People in those fairy tales and magical stories want to believe that erasing memories is the way to fix it, the way to make it all better, to make it as though it had never happened, to take away the pain.

Pain is what we have.
The pain of missing Sammy so very very much.
To look over the breakfast table and know that there's one missing.
To know that there will never ever ever be another photograph of him.
To know that the milestones that he celebrated are the only ones of his that we will ever celebrate.
To know that his life just stopped.
This is pain.

And yet...if you came to me and offered to erase it all...I would not let you.
I would not erase those days and weeks and months and years with him.

I wouldn't even erase the 33 days, the last 33 days of his life. The 33 days that we lived with the real knowledge that someday he wouldn't be here.

Would I erase the calendar in my mind?
Because each day, I can tell you where I was last year on this day. I can tell you that last year on this day we went to lunch at Michael's. I can tell you that Sammy and I talked about his funeral. I can tell you that the next day we went into the city and got passports for the kids for our trip to Israel.
The calendar in my mind might grow a little fainter. Next year, I might not be able to tell you exactly where I was on this date.

Then again, I might....

I totally get why these fairy tales and magical stories believe that erasing the memories will make it all better. But you know, in those stories, it always seems to catch up with them. The memories always seem to come back, to return in some way that helps the characters to learn how important those stories are, how important those events were, and that even with the pain...they would rather know, rather remember, rather have the life that was lived.

And so would I.

Missing him every single day. But I wouldn't have given it up.

334 days since I last kissed him goodnight.

A year ago today: What he said when we told him he was going to die -- a conversation that no parent, ever, ever, ever should have to have with their child.

He always wanted to hold Solly...

Reading to his little sister

Is today the day to donate to St Baldricks Foundation?