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.

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!?

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