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

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

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.

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?