Wednesday, May 20, 2015

Unwelcome

Dear Ed and Nadia and Olivia,

I ever-so-much wish that I wasn't welcoming you to this awful club, this community of those left behind in the terrible backwash of childhood cancer. So we'll call this an "unwelcome letter."

Emily's face on the front page of this morning's Chicago Tribune made my heart thump harder, my eyes water, and my stomach clench over my coffee. And to read those words, "she is survived by..." made me sob through the whole article. I can't stop thinking about your family today, thinking about the fog and the haze, the way that you're looking out the window and wondering how, how, how is it that the sun had the audacity to come out?

There's noise, I'm certain of that, and a lot of people milling around your house. And then there are the quiet moments, the stillness that feels so deafening, knowing that there's one person just missing from your house.

It's been 522 days since Sam died, and I remember those first hours as though seared into my mind. The first phone calls, the plans, the obituary-writing. I remember wondering how we would live. I remember soothing children and standing under a hot shower, weeping. And I remember how many people reached out, perhaps not right away, and their very existence helped me to see that I would get up the next morning, and the next and the next. Some of them did it by reminding me that I still had an important mission in this world, the mission to make this world a better place. But many of them did it by telling me their own stories. "My sister died." "My daughter died." Stories that I didn't know. Stories of deaths that happened when they were young, so young....and this person was standing in front of me, still standing, and their arms (real or virtual) were wrapped around me, telling me, yes, you will go on.

We get recognized occasionally, as "that family whose son died." We nod. We smile. We might cry a little when you mention his name.

Ed, Nadia and Olivia -- I'm so sad to see your beautiful Emily on the front page of the Tribune. As I said, when Sam died, there are a million-billion other ways that I would have wished for this "fame." (Sam always wanted to be famous, you know.) I wish I had great wisdom to offer you. I wish I had known Emily, and I wish that Sam and Emily could have stood together on an amazing stage and shared their pride and glee at being survivors. I wish we could have seen them receive awards and diplomas, find life-loves and fulfill dreams. When I tell you that Emily did so much in her life, that she accomplished so much and brought so much awareness, I imagine that you say, like me, "if only there had been more time to do more."

It might not feel like it today, and it will certainly never ever be the same, but there will be light again. The light will feel different, a little dimmer perhaps, or a new hue. But there will be light again...for all of us.

With sadness and blessing for your family,
Phyllis

I'm heartbroken to remember that Emily was one of SEVEN children who died yesterday from childhood cancer. I'm even more heartbroken to know that 46 more children were diagnosed yesterday and today and tomorrow with cancer. I believe in a future in which this isn't the case. The 36 Rabbis have reached our goal of $1 million but we can't be done. How can we be done? Please help us.

2 years ago today

Monday, May 18, 2015

Inspiration

It's been a busy month around here.

Today I was honored for "vision and inspiration," by the American Committee for the Weitzman Institute for Science. This is an incredible research facility in Israel that is engaged in cutting-edge medical and scientific research. Some of their cancer research work has been revolutionary and continues to make strides.

We're not there yet.

But breakthroughs are happening.

So I was really pleased to be able to support this organization and be a part of the Women in Science luncheon today. What an honor! Wow...thank you!

And I was able to speak and remind everyone that just today, 46 children were diagnosed with cancer and 7 died. Each day, I believe in a future in which that isn't the case.

But the truth of it is...inspiration has come to me from so many along the way.
And so here is part of what I said today:

I have met so many inspiring women and men along the way in the past few years. Mothers and fathers pushing strollers and wheelchairs, chasing bald toddlers with IV poles. Parents searching all over the world for bone marrow matches for their children, uprooting their families in search of the doctors who know the diseases that afflict their children. Families putting on a brave face, traipsing off to wishful trips and imagining bright futures that slowly dim. Young patients helping other patients, offering comfort and support as they discuss their central lines and their favorite hospital tricks and treats. Cancer survivors offering hope and inspiration by their very existence. Nurses who work nights and days, who remain calm during terrifying moments and work with efficiency and competence to soothe their young patients. Doctors who are kept up at night by the DNA of their patients' cancers, fretting over platelet counts and liver function numbers, and offering what they have, only data-based hope that often doesn't have enough data to offer enough hope. I stand here today representing all of them, knowing that their voices are not often heard. People tell me, often, that our story, Sam's story, was special. I often reply that unfortunately, his story is neither unique nor special. What is different about Sam is that his parents are storytellers with big voices. And so I represent so many others, so many inspirational and visionary people who inspire me every day. I say thank you, not just for myself, but for every person who has and continues to inspire the work of raising funds and awareness towards ending childhood cancer.

Thank you for honoring me, and for giving me yet another opportunity to say Sammy's name out loud to a whole roomful of people.


Photo credit: Tante Anne

Tuesday, May 12, 2015

Dead is Dead: Euphemism and the Power of Words

So...this happened last month: https://youtu.be/UUqr4P7P3gM
(You have to click over to help increase my "views" on YouTube!)

There have been so many things that this blog has allowed me to say, and so many ways that it has allowed me to write and teach about the lessons that I've learned throughout all of this. Sometimes, I wonder if I'm pushing the envelope just a little too far as I talk about grief and the way that it is impacting my family.

It was such an honor to be invited to speak at the TEDx event at Abilene Christian University last month. In case you're not familiar with TEDx, it's an off-shoot of TED, a global series of talks featuring "ideas worth spreading." I thought a lot about what I wanted to say, what ideas I had that were "worth spreading," and while I had a lot to say about a lot of topics (um, under-funding for pediatric cancer research, anyone?), I had to think of what I could talk about that wouldn't cause me to break down in tears on the TEDx stage.

And so I chose to speak about euphemisms, phrases that I've tried to avoid using here on this blog and when talking to my kids. Obviously, it's caused us a few headache-y conversations, with Solly in particular, but I think that overall, it's been right for us.

I think Sam would have been proud of me.

Saturday, May 9, 2015

Dear Sammy

Dear Sammy,

Have I mentioned lately how much I miss you?

Yep.

I meet people all the time who tell me how inspirational you have been to them. I nod, I smile. I don't cry, usually.

But what do I really want to say? I want to ask them to imagine how much more inspirational you could have been if you were given the chance to grow up. You barely go to do anything, after all. So much time spent in the hospital being your delightful self, you never really got to go out in the world and really do something, really figure out who you were going to be. Oh, Sam, I think the world missed out on something big. Everyone thinks their kids are something special. I know that. But you, Sam...I think you would have done spectacular things. I think about it all the time, I wonder what you would say to other kids when we would visit the hospital. I wonder what you would say when you stood on stages and attended walks and blood drives and shave events. (I wonder what you would be doing in school, at home, everywhere...) I miss you every day. And I'm desperately sad about what the whole world really missed out on.

Everyone thinks about you all the time, but Solly talks about you the most. The other day he asked me, out of the blue, "is Sammy taller than all of us?" I felt a little bit breathless to think about how much taller you would be. But then he followed up: "I think Sammy is standing on a big turtle." Yael and I laughed. He makes us laugh every day, and it helps us to feel better. We try to laugh every day...

David cleaned out his room and found two notebooks filled with your drawings. It gave me such pleasure to look at your simple pencil sketches and run my fingers over the sheets of paper...your hands touched these pages. "Classic Sammy," we called them, as we paged through pictures of dinosaurs and monsters and aliens. I can only imagine what kind of artist you would have become. I bought Solly his first drawing notebook this month...you would have been a great drawing coach to him.

Spring is here. Mother's Day is around the corner, and you know that we never made a really big deal about it. You know I think that you should be awesome to your mama every day. But I love the handmade presents and the heartfelt cards (anytime). There are only three people left who call me "mom" and that breaks my heart each and every day.

We're getting ready to close out another school year. You'd be getting ready for a summer at camp, I'd be comparing pictures of you from the beginning of the school year to now. Instead, we're doing these things without you.

Miss you and wish you were here.
Love,
Mom

P.S. Here are a few pictures of your adorable face....missing you every day. Oh, by the way, would you still let us call you Sammy? Would you be insisting on Sam...or Samuel?




Tuesday, April 28, 2015

500 days

We talk about Sam every day.
He's on my mind just as much as my living children.

We're growing caterpillars and waiting for them to turn into butterflies. The last time I did this was with Sam. He loved this project. Truthfully, I loved it too. I admitted last night that I think we're growing caterpillars because I wanted to. I'm glad that Solly and Yael are playing along with me.

I still can't believe that he's just not here.

Even though I know it, sometimes it hits me so hard, like a punch in the gut.

Five hundred days seems like such a very very very long time.

One year, four months, and 8 days.

12,000 hours.

720,000 minutes.

Sometimes I feel as though I'm living every minute. I watch the hands of the clock tick around and I wonder how I'm going to make it to the next one.

Sometimes I feel as though I'm living every hour. Will the next one ever roll around again? Will I ever be ready to take on another hour?

And sometimes it's day by day. It's all I can do to get out of bed in the morning and fall back into it in the night.

And sometimes they slip by...quickly, without noticing. Sometimes I look up and hours have passed, days have flown by, and we're weeks ahead of where I thought we were.

Time feels fluid, uncertain, mixed up.

We were in the car, driving carpool. The girls in the back were discussing when something happened. "It was in 2013," Yael said, "I know because Sam was alive and in the hospital."

Solly is currently obsessed with "the future." When can we go there, he asks. How long will it take to get there? Can we go there now? I answer as best as I can, knowing that my answers are silly. I barely understand the passage of time these days...how do I explain the marching forward of the global clock with this bright little four year old?

Time's such a funny thing, isn't it? Each day they get a little older, a little bit bigger....and a little bit farther away from Sammy. Each day I get a little older, too. Sometimes it feels like the years ahead of me stretch on ...and yet I also feel, so very deeply, the blessing of their growing bodies and souls, their explorations and ideas, their laughter and their hopes and dreams....

Time keeps marching on....500 days without Sam seems eternally long. And yet, it feels like it was just yesterday that I kissed him goodbye.

Day by day....

About a year ago: Boxes
About 2 years ago: What we Know (when it really really began to get scary)
About 6 years ago: My Big Brother Dressed Me
About 7 years ago: Spring Came and Went
About 8 years ago: Like Big Brother

When Sam was 500 days old.... (March 23, 2007 -- can you believe I had pictures from that exact date?)




500 days before he died (August 1, 2012, of course I had pictures)


Okay, this one's from August 2 -- but I love it.


Wednesday, April 8, 2015

Crystal Clear

Some days stand out, crystal-clear, in my mind.

Like this one, three years ago:



We went to the park. It was a newish park, and new-to-us. It was a beautiful, slightly chilly spring day, as you can see by the hoodies and jackets. It was Passover, and I remember bringing a whole box of matzah crackers as a snack. I think it was Spring Break.

Why do I remember this one day?

Nothing particularly special happened. My kids frolicked, literally frolicked, in the spring weather. They bounced and climbed and ran and slid and swung.

Let me be clear -- we go to the park all the time. But I can practically feel the cold metal bars of the bench under my bottom and the sun on my face as I think about this day, three years ago, a day that was really unremarkable.

And it's unfathomable to me that Sam probably already had leukemia in his body. 

Some days stand out, crystal-clear. I keep rolling this clear memory over in my mind, savoring it, loving it, remembering it for what it was -- one of my last perfect days, when cancer didn't hang over us, when danger was never on the horizon, when I lived in a bubble that I never, in my wildest nightmares, believed could be burst in the way that it was.

(Just 42 days after this one, he announced that he felt pain in his arms, and 65 days later....the diagnosis.)

I keep rolling this clear memory through my mind, feeling the chilly bench, breathing the cool spring air, remembering the shouts of glee, the eager games, the sliding bodies and running feet...and wishing that we could just go back, just for a few moments, to that place of perfection....I wish I had so many more of these clear memories, these perfect days. I wish I had taken even more pictures, I wish I had written down more stories, I wish I had documented every minute, every second, every breath and every heartbeat....

481 days since I last kissed his little head.

Two years ago today

Sammy's NP, Molly, is walking her own scary path and she's raising money for the Leukemia-Lymphoma Society. Read her thoughts on our Sammy here and we've given her one of Sammy's drawings to sell in a t-shirt, so you can buy an all-new, original Sam Sommer t-shirt here. This is a lady who knows the value and benefit of research dollars, let me tell you.

Friday, April 3, 2015

Snippets

Snippets of the last couple of weeks...

The last Passover we spent with Sammy...
The way he loved the frogs and the silliness, how he really didn't like matzah at all...
Remembering him and knowing there's always an empty seat at our table.

We gathered together for a family picture and Solly says, "We have to wait for Sammy!"
There was an audible gasp..."yes, Solly, we all want to wait for Sammy."

In the US, there's never a personalized necklace with Yael's name on it (in Israel, she's always lucky) but that never stops us from looking. And of course, there's always a Sam. How could I say no to a heart locket with "Sam" written on it? She doesn't want to take it off.

January, February, and most of March -- these are months in which Sam never had cancer. Months in which he never spent a night in the hospital. But now it's April, and for the rest of the year, each date is seared into my memory, a day to think about where we were on this day....

Would he be teaching Solly the Four Questions?
Would he be counting down the days til camp?
Would he be finished with all 7 Harry Potter books?

Forever....we will wonder.

Forever...we will miss him.




Sammy's NP, Molly, is walking her own scary path and she's raising money for the Leukemia-Lymphoma Society. Read her thoughts on our Sammy here and we've given her one of Sammy's drawings to sell in a t-shirt, so you can buy an all-new, original Sam Sommer t-shirt here. This is a lady who knows the value and benefit of research dollars, let me tell you.