Thursday, January 29, 2015

Helpless

This week I discovered something else that Sam's death took from me.
It took from me something that is actually very important to me -- the ability to feel helpful.

Before Sam relapsed and died, I was a Resource.
I could share my knowledge and experience about being a cancer parent, about cancer treatment, about hospitals and doctors, about siblings and pharmacies and inpatient snacks.

I was useful to other parents and families.

And while I actually figured this out a while back, it hit me hard this week.

Our experience, my very existence in fact, embodies their worst nightmare. No one wants to learn from my experience because no one wants this experience. EVER.

And I would never ever ever wish it upon anyone.

Maybe it's just a selfish thing, this way that I'm feeling.
There are other very useful, wonderful, and oh-so-lucky Resource-people out there.

But it's one more thing that I'm missing. It's one more way that my life has changed, even in the brief period that I was useful and helpful...and now I'm not. I wanted our family to be that beacon of hope, I wanted us to be that shining light that helped others to see what was possible. I had imagined it....it was part of what kept us all going. After this is over, we would say.

And the whole thing makes me angry. It makes me cry frustrated tears over feelings that I didn't even realize mattered to me....

Sam is a St Baldrick's Ambassador this year and it makes me so angry that he is the DEAD ONE.* It makes me so angry because he would have been amazing, awesome, simply fabulous as an LIVING Ambassador. It makes me so angry that Sam isn't here to make videos and send messages to kids who need encouragement. He was so good at making videos. He loved helping.

It makes me so angry that his story makes people cry tears of sadness instead of tears of joy. It makes me so angry that we thought he had a whole lifetime in front of him and it turned out that lifetime was only 8 years long....

*Please understand that we are so honored and glad to be working with the St Baldrick's Foundation this year to honor Sammy's LIFE and to help with their very important work. The one thing that I've realized in this new feeling of helplessness is that while I can't serve as a "beacon of hope," I know that the research dollars we raise can and ARE that hope.
Collecting movies from the mail at RonMac. He was so proud of how many you all sent.
Helping to unwrap all the RonMac movies and label them. 
Some more of those donations. Love that look on Solly's face.
Learning to take pills. He was very proud of the skill, and we talked about how he would be able to teach other kids.

Thursday, January 15, 2015

Januaryish

I realized this week that January is a pretty quiet month for our family. No major holidays, no birthdays, and usually a lot of cold weather. I went back through my pictures to look for previous Januarys. (You can tell that January is a quiet month because one year I only took 22 pictures in the whole month! One January, I took a lot of pictures of lunch boxes. So you know it was an exciting month, right?) We really don't even have any "cancer milestones" in January because Sam was never in treatment in this month. He never had leukemia in a January.

We spend a lot of time in our jammies in January.
January 2006
We spend a lot of time just hanging around the house in January.

It's in these quiet, ordinary, everyday moments that I find that I miss Sam the most. When I look around the house with that soft sigh of contentment that it's warm and cozy, that we're all together, that everyone is happy ensconced in toys or books or games...and the electric shock of realization that he just isn't there jolts me out of that moment. I look around at the other kids and I wonder....what would Sam be doing right now? Would he be reading a book? Playing a game? Wearing his pajamas?
January 2008
Holidays and birthdays and milestone days are big and bright and oh so hard.

But the regular days, the everydays, the day-to-days....these are even harder. The doctor's appointments and dentist appointments and play rehearsal schedules and soccer clinics and birthday party invitations and what's for dinner and where are we going this weekend....these are the times when it hits me over and over again that I'm moving around a lot of pieces and a lot of parts and a lot of people...and yet I'm still coming up one short. Each and every time.

January is a quiet month.
It's in the quiet that I miss him the most.

(Pardon all the pictures. I couldn't choose just one January.)
January 2008 - once a "throwaway" picture....
January 2009 - hanging up family pictures
January 2010 - looking at bugs at the museum
January 2010 - oh how he loved the butterflies
January 2011 -- oh, that face
January 2011 -- loving on his baby bro
January 2011 -- pile o' kids
January 2012 -- um, what!?
January 2013 -- my forever four
January 2013 - what kind of mom does this!?

Thursday, January 1, 2015

Yahrzeit

A year has passed...and then some.
And yet today we come to the 11th of Tevet.

You see, as I've said before, I live with so many calendars....but the two that are most familiar to the rest of the world are the Gregorian (today is January 2nd) and the Hebrew (today is the 11th of Tevet).

They're never exactly in sync because they don't need to be. Bear with me for a brief explanation.

The Hebrew calendar is based on a lovely hybrid of lunar and solar. Its complex organization was set down a long time ago by a wise group of scholars who figured out how the lunar calendar by itself would not be organized enough for us, the People of the Detail. Left untended, the lunar calendar would rotate throughout the solar year, and holidays that celebrate the fall harvest could regularly fall in the lush green of spring. So the hybrid came to be, adding in not a leap day, like the solar calendar, but a whole month.

If you'll recall, 2013 was the monumental year of Thanksgivukkah. Two holidays that had never come together quite like that before and won't again in our lifetimes. Of course something impressive happened the year that Sammy died, right?

But what that interesting detail of the calendar did was to also give Sam a most interesting, and possibly frustrating, Hebrew Yahrzeit date. Today is January 2, 2015. We did not observe Sam's Hebrew Yahrzeit AT ALL in 2014. And it will show up again on December 23, 2015. Yes, you read that right, twice in 2015 and never in 2016. We'll only ever see his Hebrew date in the "odd" years. (Until 2026, by the way....and then....well, I'm sure you'll still be reading my blog then.)

I live in two calendars, and right now I'm in Israel, a place where people actually know when the Hebrew date is, for the most part. Another interesting thing to note is that the 10th of Tevet is a minor fast day, and so of course, I'm never going to "miss" the 11th.

So what is my point? I'm not even sure. Both calendars matter to me, and both are a part of the rhythm of my life. I will say Kaddish today. Perhaps someday we will observe only one Yahrzeit, but I doubt it. Perhaps someday the other calendars that live in my head will fade, and I won't think about Diagnosis Day, about Transplant Day, about The-Day-We-Googly-Eyed-The-Whole-Hospital.

Maybe not.

Transplant Day
Diagnosis Day

Googly Eye Day


A year ago today: Paper Time

Tuesday, December 30, 2014

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.

Wednesday, December 24, 2014

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....

Sunday, December 21, 2014

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....

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....