Approval

Sam's favorite move was How To Train Your Dragon. He was, like most fans, waiting anxiously for the second film to be released. These things take time...

When your kid has cancer, these things become important. People pull in favors. People make phone calls. And people do amazing things.

Back in the fall, Dean DeBlois, the director and writer of the How To Train Your Dragon movies, got in touch with us through some really lovely connections.

Some plans were made.
But it didn't quite pan out the way we'd hoped before Sam died.

Then Dean made a remarkable and generous offer -- a preview screening of HTTYD2 for us with a special dedication to Sammy. We were so incredibly touched and it was so bittersweet -- to know that we would see this movie that Sam really wanted to see....and to know that he would not. Ever.

Yet we gathered together at the movie theater.
We sent out some invitations, in a relatively helter-skelter fashion.
We tried to make it about the kids, about Sammy's friends who really and truly should never ever have had to attend a funeral.

(A brief side note: I've never "run" a private showing before. It's not like a regular movie, obviously. By starting the film manually, the manager gave me a few moments to address the crowd. With a roomful of his favorite people, Solly was not intimidated by having his mom hush the group. As soon as I got everyone quiet, Solly shouted "Mommy! Sit down and stop talking! The movie is going to start any minute!" Oh how he makes us laugh...)

The movie opened with a very special dedication card which read:

Dedicated to the memory of
Sammy Sommer
whose enthusiasm and courage inspired all of us at Dreamworks

This was met by tears and applause. The love in the room was palpable as we settled in to watch the sequel to Sam's favorite film.

The movie absolutely did not disappoint us.
Without revealing any spoilers or any details about the film, let me just say this:

Sammy would have totally approved.

And his only question would have been: when's the next one coming out?

Thank you so much to Dean, to his whole team, to everyone at Dreamworks who made it possible, and to our friends who made the connections possible. In the midst of our continued sadness, this gave us the opportunity to be together, to share something that he would have loved, and to honor his memory in a really special way. We are immensely grateful.

Sammy dressed as a dragon

For his fifth birthday, Sam had a Dragons and Dinosaurs Party

Just to show you how much he loved dragons....yes, we made him this cake. 

Feathers

I don't believe that the dead send us signs.

But I do believe that we can read almost anything we want into those things that we see. And sometimes that is enough.

As I was walking into the hospital on Thursday, I looked down at the ground and saw a feather swirling around in the breeze.

Sam loved to pick up feathers that were discarded by birds.
I have quite a few feathers-in-ziplock-bags around the house, since I was always worried about whatever germs those feathers might contain.

So a feather that greeted me at CHW felt like a good thing. Almost like a sign.

And then today, our first time swimming together since Sammy died...a feather was stuck to the pool noodle I chose for Solly (green, of course).

Did Sam send me a sign?

I don't really think so.
But it made me feel just a little twinge of his presence. A presence that is really always with me.

Oh, how we miss him.

Memorial Day weekend will always be a terrible memory of the start of this cancer journey. Sam was in terrible pain over the weekend of Memorial Day 2012, we just didn't know what was going on. I remember that doctors' appointments bookended the weekend -- our regular doctor and an orthopedic specialist. No one knew what was going on.

Last year, Memorial Day was spent in the hospital, and I was remembering the year before.

We are coming into a part of the year that has been so hard for us for the last two years. The "kickoff to summer" will always remind me of these summers that were "ruined" (Sam's word) by cancer. This year, we're planning a "normal" summer. But what does that really mean? Will we ever be "normal" again? It's going to be different no matter how we look at it. It will never be the same.

Summer was always my favorite season. Now it's....sad. Hard. Not what we ever imagined.
And yet, we'll do what we've always done.

We planted our garden.
We play with the water-hoses.
We eat popsicles on the front porch.
We'll take our broken hearts to camp....

We'll put one foot in front of the other....holding each other upright.

Memorial Day, 2008

Memorial Day, 2009

This is SUCH a Sammy face. Memorial Day, 2010

Also 2010 -- at the Milwaukee Zoo

Memorial Day, 2011. Who knew this would be the last time he ever "celebrated" this weekend?

Memorial Day, 2012 -- the only time he swam that whole summer. He had intermittent bone pain...and we hoped swimming would make it feel better. He was game to try...

A smile on Memorial Day 2012....but much of that weekend was spent in pain

Memorial Day, 2013 - in the hospital

Like Home

I went back to the hospital on Thursday.

It was 160 days since the last time I'd been there, that terrible last day of Sam's life.

I didn't know what it would feel like to walk into that building, that place where we had spent so much time. I was so very apprehensive, I was nervous and scared.

I walked in through the revolving door, the revolving door that Sammy so enjoyed.
The lobby looked....the same.
It felt the same.
It felt....normal.

The thing that felt so hard? Reaching down for Sammy's hand.

And it wasn't there. 

In this space that was so filled, for me, with his presence....I felt him. And I missed him. Desperately.

The hospital became our community for the 18 months of Sam's cancer journey. We made friends with nurses and doctors, teachers and art therapists, greeters and chaplains and physical therapists and  physicians assistants and ....everyone. There were so many other patient families, so many other kids and parents. So many people... in an odd way, we miss them all.

I went to the hospital for the purpose of participating in the hospital's major fundraising radio-thon. Patients and families share their stories in the hopes of raising money for the amazing care that we received throughout all of our experience. How could I say no? (And to those of you who sent gift cards so that I could deliver on your behalf, thank you. Over 40 gift cards were given to the HOT unit to help out those families.)

I was so unbelievably touched to see how many of the hospital staff members came to support me. You can see in this picture (below, behind me) just a few of them, but I could see how many more there were as our time on the radio went on. I couldn't look back, I knew that I would break down. I had to look forward (which I'm sure is why the room is set up like that!) and focus on Dave and Carole as they spoke. It felt as though these incredible people who had spent so much of their energy trying to save our child....today they were directing all of that energy toward lifting me up and helping me to tell our story. I'm not sure that I said enough on the radio about how much they all meant to me, to our whole family. I'm not sure that I can ever say enough.  (And of course, Dr. M, who joined me for the interview and whose strength helped me to get through it....thank you.)

Thanks to the Dave and Carole Facebook page for this picture.

To walk those halls, to spend time again in those spaces that Sammy inhabited with so much life...it didn't hit me nearly as much until I was almost home...but oh, how he would have loved to be on the radio. Oh, how he would have loved to check out the microphones and he would have been their darling. Oh, what a great interview he would have given to them. Oh, how I wish I could have shared this with him...

They say you can't go home again...but going back to the hospital did feel like a home-going. If home is a place of love, then that is where I went.

Pictures of Sam in the hospital lobby in various stages of treatment....

One of Sam's "day pass" trips after BMT

Of course you play catch in the lobby?! With Uncle Josh.

Discussing Zeyde's knee replacement surgery. Solly has worn this t-shirt this week.

In the Healing Garden. I could see it from the lobby but I couldn't bring myself to go out there.

Oh how we loved the fish tank. 

Where's Sammy....Yep.

Apparently, there are still googly eyes in the hospital...maybe not these ones...but in the clinic....!

If you are so inclined, donate to the Children's Hospital of Wisconsin Miracle Marathon here.
With gratitude to Dave and Carole for the work they do on behalf of the hospital.

Updated: You can hear the packaged version of my interview here: https://soundcloud.com/96-5-wklh/miracle-marathon-montage-skipping-sams-story

Yael's Shave Story

Note: Yael dictated this to Karen, even asking for parentheses and making specific word choices. (Mom added the pictures...) 

My name is Yael Sommer. I am seven years old. I am a fashionista.

On December 14, 2013, my brother died. His name was Samuel. His favorite movie was “How to Train Your Dragon”, and his favorite animal group was reptiles. I miss him.

On April 1, 2014, my parents shaved their heads because of Sammy. They did it with a lot of their friends, and they did it for kids who have cancer. They raised a lot of money for kids with cancer.

My school was doing a fundraiser for St. Baldrick’s, and some of Sammy’s friends and adults at school decided to shave their heads (or cut their hair). My friend Talah and I decided it would be fun to shave our heads, too. We raised a lot of money for the doctors to get medicine for kids with cancer so that they don’t die.


(video link: http://youtu.be/-SS2f9mVIWU)

We shaved our heads on May 13, 2014. Since there are 500 kids in my school, we did grade by grade assemblies in the multipurpose room. Two kids had their heads shaved at once. (Talah and I did it together.) My principal and some teachers shaved their heads. My babysitter, Ellie, shaved also.

I was a little nervous before they shaved my head. First they cut my hair. Then they shaved it. It tickled and it hurt a little when they shaved my head. Right after they shaved my head, I looked in a mirror and I was surprised! I looked cool.

I was so brave that my brothers ended up shaving their heads, too! Solly wanted to do it for a long time, but David just ended up doing it last with his friend Frankie.

I think Sammy would have been happy that I was doing it for him. I shaved my head because he did it and he knew what it felt like, although I did it differently.

Solly is wearing Sammy's turtle shirt <3

Recital

Sam loved his piano lessons.
Like any kid, he didn't always love to be told to practice.
But he loved piano lessons, and he loved his piano teacher.

The third Sunday in May will always hold this memory for me.
I recounted it last year.
In some ways, it was the very beginning of our leukemia journey, we just didn't realize it.
How could we know that the pain in his legs that day was the first signs of the nightmare that was to come? We could not.

I'm good at photos, as you might have noticed.
I'm not quite as good at videos...and of course, I'm now relishing every last scrap, every last second, of video footage of Sammy. At least I'm good at saving stuff, even the blurry and out-of-focus things. Everything matters now.

So today I realized that I might just have a video of this piano recital from May 20, 2012....and I do.
(It wasn't his first piano recital, and it wasn't his last. But it's the one that I recall so vividly...)

Here it is:


It's not much, I guess. But I'll take it....

--
A few housekeeping notes:

I am honored to tell you that I will be participating in the Children's Hospital of Wisconsin Miracle Marathon (radio telethon) on May 22nd. It will be my first visit back to CHW since Sammy died, and I'm grateful that I'm going for the purpose of telling his story.

It would not be a proper trip to CHW, however, without an opportunity to help out the families that continue to be in treatment there. I'm hoping to take with me a stack of gift cards that will offer families a little treat or perhaps ease the burden of buying lunch or dinner. If you're so inclined to help us out, I've compiled this list of national-chain-kind-of-places that are near the hospital.

If you decide to help, please note:
***IMPORTANT: Please make sure that the increments of the cards are $25 or under. Even a $5 card means so much to a family.

***IMPORTANT: Please do not send me printable gift cards via email! These won't work.

Cards can be dropped off at my office (Am Shalom) or our home (message me for address if you need it) or mailed.

Thanks for helping our family help others.

Suggested places near CHW:
Subway
Chipotle
Starbucks
McDonald's
Pizza Hut
Noodles and Co
Jimmy John's
Panera
Taco Bell
Bruegger's/Stone Creek Coffee
Walgreens
Target


More on the Children's Hospital Miracle Marathon:



http://www.chw.org/giving-and-volunteers/events-supporting-chw/dave-and-carole-miracle-marathon-for-childrens-hospital/

And in other news, we're now the Baldest Family on the Block, with all of us shaving our heads for St Baldricks in the last few months. Thank you for all of your support and love.

Empty Swing

We went to the park the other day.

Yael was pushing Solly on the swings.

For a few moments, there was another child on the swing next to them...a little boy.

If I squinted my eyes and tilted my head to the side...I could imagine that he was Sammy. 

Then he was gone, and the swing was empty.

My days feel so full and yet...haunted by the empty swing. 

Like a phantom limb...a feeling that I can't shake, a missing piece, a part of me that's just not there.

In yoga, we're told to root down into the earth while simultaneously reaching up. 

The push-pull of conflicting actions, the desperately wanting to be in the past while trying so hard to live in the present...this. This is what we're doing. Rooting down into the earth, digging deep and finding the strength to kiss boo-boos and cut up chicken nuggets while, at the same time, reaching up for the glimpses and memories that threaten to carry me away on a wave of sadness...rooting down into the memories and reaching up for a future in which they are soft and kind....rooting down and planting ourselves firmly in the present, reaching up up up to a magical place where there are six of us....the push and pull of it all...

And I blink blink blink my eyes and the swing is empty.

A year ago....

8/2006

June, 2009 (pajamas)

July, 2010 (at OSRUI) (pajamas)

May, 2011, pushing his sister with style (note that SHE is the one in PJ's and he isn't....unusual!)

June, 2013 - in Green Lake, Wisconsin....so many thoughts on this picture. Black socks and crocs?! So Sam.

150

The numbers feel ridiculous.
One hundred and fifty days since he died.
One hundred and fifty days.
It's such a very long time.
And then again....it's like nothing.

I heard an interview on the radio this week with a singer, Sam Baker, who had experienced a horrible trauma, a bombing that nearly killed him. He was in a train compartment with a family who had a young boy with them. In the interview, he explained that they had talked "for a second" in the compartment just before the bomb went off, killing the child and his family and severely injuring Sam Baker. Sixteen years later he wrote a song about the boy:

How long
How long ago
Sixteen years
Everyday
Of course I know
Of course I know
Forget his face
Of course I don’t
Etched like a crystal vase

Sam Baker (yes, I notice that his name is Sam) talked to this boy FOR A SECOND before he died and the boy is forever etched in his heart....I held my Sammy for so many many many seconds. So many. His etching is so deep, so very very deep.

Sam Baker again:
some things don't heal
I can't wake up from a dream
when the dream is real

150 days is not 16 years. But I know that someday it will be....the days stretch before me, and I know they will be filled with real life...with buying new shoes and making lunches and kissing knee-scrapes and spraying water on hot days....and they will be filled with love. Even as they are also filled with an enormous and gaping empty space. So the days stretch before me....and I miss him...we all miss him.

Where we were a year ago today....

150 days old - April 7, 2006

April 7, 2006 - 150 days old (with David)