Tuesday, December 16, 2014

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....

Sunday, December 14, 2014

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....


Thursday, December 11, 2014

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

Monday, December 8, 2014

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

Saturday, December 6, 2014

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.


Thursday, December 4, 2014

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....