Thursday, November 27, 2014

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

Wednesday, November 26, 2014

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.

Saturday, November 22, 2014

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.





Thursday, November 20, 2014

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.

Thursday, November 13, 2014

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?

Wednesday, November 12, 2014

The Last Day

A year ago today was the last day of hope.
The last day that I believed it was all going to be okay.

Even though I've said before that I wasn't totally sure.
That I had my doubts, as we edged nearer and nearer to total collapse in those days leading up to transplant.

I think I really did believe it all all going to be okay.
I mean, in some way or another, it would work out, right?
How could I even begin to fathom, to imagine, to understand what was about to come?

A year ago today was the last day that I woke up with any feeling of "normal," even though "normal" still involved a PICC line and a clinic visit that day.

A year ago last night was the last time I kissed Sammy goodnight believing that I would have thousands more chances to kiss him goodnight.

But I only had 33 more chances to kiss him goodnight.
From that day, one year ago, he only lived for 33 more days.

A year ago today I heard the words that flattened me.
"There's nothing more that we can do."

We can buy him some time.
We can buy a little bit of hope.
But there aren't any miracles.

A year ago today was the last day that I believed it was all going to be okay.

How can it be that it's been a year since then?

A year ago: 520 Days Since Diagnosis
Two years ago today: Things were quite the opposite (in this post, I actually had enough hope to believe that we would be able to close up shop on this blog....oh, how naive I was.)

There are still t-shirts to be had, but today is the last day for them, t-shirts created by my sweet Sam and his amazing big brother. Kids' sizes are here and adult sizes are here. Proceeds go to the St Baldrick's Foundation. Maybe someday their work will help make it so that no family will hear those horrible words, "there's nothing more that we can do." If you feel like you have enough t-shirts, you can make your donation here instead.

11/12/13
PICC line dressing change 11/12/13
Two years ago today

Friday, November 7, 2014

Birthdate

Once, while Sammy was in treatment, I had to make an appointment with one of my own doctors.

"Date of birth?" the receptionist asked.

Without even thinking, I said, "11-08-05," the dates that I had been reciting multiple times a day since May of 2012. The receptionist was appropriately confused....

Sam's birthdate.

It tripped off my tongue, far more than anyone else's, even my own.

We're all conditioned to answer that birthdate question.
Even Solly can tell you when his birthday is (even though he reminded me last night that he hates when it ISN'T his birthday).

And here we are.

11-08...last year, he wasn't quite up for a party. So I offered three separate birthday playdates with his three besties. And I want "three cakes, Mom" -- he specified for me in his daily journal entry:


Only one of the cakes was ever made.

Sam was born on a Tuesday morning, at about 10am.
I remember the doctor perching on the end of the bed and telling me to push.
I remember wrapping him in a bili-blanket and holding him all night long before his bris.
I remember looking at his sweet little face and believing that all was right with the world.

11-08-05.
3,288 days ago.
9 years.

And he'll always be my 8-year-old Sam.

Last year: Little Things
Two years ago: Birthday Boy and Lucky Number Seven