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




Monday, November 3, 2014

Kinship

I’ve always been a really voracious reader, and as I reminded my 9th graders the other day, the pickings were far slimmer in the kids’ and young adults’ department of bookstores when I was younger. So I was always scanning bookshelves for things that looked interesting to me.

I remember being young, maybe 9 or 10, when I discovered a slim volume on the shelf at my aunt and uncle’s house. It was short, which didn’t bode well for me, since I tended at that point to pick books by their length. But there was something compelling about the cover. Alex: The Life of a Child, it was called, and there was a beautiful little girl on the front — her picture slightly fuzzy and black and white. I remember reading it cover to cover, and crying big blotchy tears. And then I remember reading it over and over again.

Alex (Alexandra) Deford was the child of Frank Deford, the sports writer and reporter. She was born with Cystic Fibrosis, a disease that has a better prognosis today than when she lived. Alex lived with CF for 8 years and died shortly after her 8th birthday. I remember researching the Cystic Fibrosis Foundation, and even setting up some kind of run/walk event to benefit the CFF through my Sunday School. 

Just a week or so ago, I heard Mr. Deford on NPR. He’s a regular contributor, and he was giving a tongue-in-cheek rant about the late start time of World Series Games. I giggled when he suggested that these late start times would discourage young fans of baseball, and that perhaps they would then turn to other things, like mixed martial arts. 

After hearing this piece on the radio, I went online and found a used copy of his book about his daughter. (My copy seems to have disappeared.) It arrived a few days later, and it looked exactly like the well-worn copy that I read over and over all those years ago. I re-read the whole book in one sitting.

The book had stayed with me. So many details about Alex’s life were familiar to me, the words totally present in my memory. It was like re-reading something I had only read yesterday — I had read the book so many times. In some ways, a weird foreshadowing of what would happen to us so many years later…

But I realized something as I sobbed my way through the book, and let me tell you, I sobbed reading nearly every page. When I was a child, I was horrified at the idea of a child dying. I couldn’t imagine it, I couldn’t envision putting myself into her shoes. I couldn’t even imagine her friends, the ones that wrote such beautiful pieces about the love that they had for their young companion. And so I read it over and over again. But what I realized was how I had, perhaps, simply glossed over her parents. What it must have felt like to be the parents of this child who was dying almost from the moment she began living. To read it now — oh my. (And so much has changed, of course. Alex’s parents were not allowed to sleep in the hospital with her! Plus they were always looking for flashbulbs....)

When Alex was first diagnosed with CF, the doctor who told Carol and Frank Deford said this to them: 

“‘I know you don’t know me,’ he began, ‘but this may be of some consolation. My wife and I lost a child once too. And she gave us a great deal of love and joy before she died, and that made it much harder for us. But the point is: We survived. We went on. You see — I’m here. And you’ll go on too. It’ll be horrible. But you will overcome this.’” 

Frank Deford followed that with: 

“We thanked the doctor for his words, but, at the moment, I don’t think they registered. It was only with time that I came to understand them, and appreciate them.”

Alex died in 1980. That’s 34 years ago. 

And Frank Deford was on the radio the other day, talking about baseball.

He loves his girl as much as I love my boy. I bet he woke up that morning and the ache for his Alex was still there. How could it not be? And then he got up and recorded that light-hearted piece for NPR.

There’s a certain guilt when we do things that are ordinary and everyday. And there’s an even more overwhelming guilt when we do something special or fun or celebratory. How dare we? How can our lives just….go on…when he isn’t here? How can we find light and beauty and yes, even happiness, when he isn’t here to be with us, to see the light and beauty and to be happy? And yet we do....

So much is on tap for our family in the next few weeks. A major event, David’s Bar Mitzvah. I almost typed “simcha” — the Hebrew word for “happy occasion.” Is it a simcha? Yes. Will we be happy? Oh, I hope so. David has worked hard, and he deserves to be celebrated in this moment in which he is called to the Torah. 

And Sammy will always be there.


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.

This week is Sammy’s birthday. He would have been 9 years old. In honor of that missed milestone, I’m asking you to give $9 or any multiple of 9…how fast can we reach this goal? (And of course, it hasn’t escaped my notice that 18 is double 9….)


*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.

From the bottom of our broken hearts, thank you.




Sunday, November 2, 2014

Shirts and Goals

Do you remember when Sammy told me that he had goals?
One of those goals was to design a t-shirt and "raise lots of money for cancer research." (his words)
(actually, if I remember correctly, that conversation took place in Orlando as we were driving to one of the Disney parks.)

Last week, David took one of Sammy's drawings and edited it slightly.

Here's Sam's drawing of an alien....

And here's what David did to edit it....


And then I helped him to set up a Teespring campaign, just like we did last year. This time, to benefit the St Baldrick's Foundation through the 36 Rabbis' Campaign.

I love that David was able to help make one of Sammy's wishes come true. I wish Sam were here to see the awesome collaboration. I can only imagine what a real joint effort from the two of them would have looked like.

So if you're so inclined....buy a shirt or a hoodie, support my boys in their joint endeavor:
Adults here: http://teespring.com/hanginthereSam
Kids here: http://teespring.com/hanginthereKIDS
(We have about 12 days left on the campaigns -- so don't wait!)

A year ago around now, Sam was feeling pretty well and just hanging out.
Two years ago today....Michael's birthday and the day that Sam came home from the hospital for the end of his fourth (and we thought final) round of chemo.

Friday, October 31, 2014

Birthdays

In our family November has always been birthday month. First there is my birthday, then there is...and that is where I stop. There is a gap now.

Just last year David, Sam and I all celebrated our birthdays in the same month together for the last time. First me, then Sam turned 8, then David turned 12. For eight incredible years the Sommer boys relished the month of November and all the potential it held for each of us as we celebrated our birthdays.

Now as November begins, I continue aging (backwards) this weekend, David becomes a Bar Mitzvah in two weeks...and Sam...Sam stays eternally 8. There is a gap that shouldn't be there. There is a birthday missing. Sam is missing. I feel the loss of all that could have been. I am missing all the possible futures that ended when Sam died. I feel the gap in the birthdays that will always be there as November 8th comes and goes without our growing boy there to open presents, blow out the candles (9+1) and laugh his joyous laugh.

I don't hate birthdays now.
I just hate that I can't celebrate Sammy's birthday with him here.

first birthday
2nd birthday
3rd birthday
4th birthday
5th birthday
6th birthday
7th birthday -- in remission
8th birthday -- last year
Dad and Sam on Sammy's 7th birthday