If you live in the Heights, you’ve surely heard a lot about Reaching Musical Heights in the past twenty-four hours. And with all good reason. Last night, I had the distinct pleasure of attending this every-four-years event where 500 4th through 12th grade vocal and instrumental musicians from all the CHUH schools performed on the world-renowned Severance Hall stage. Each time I’ve gone to this show, I’ve been blown away by the dedication, passion and talent of our district’s young people and by the commitment, hard work and willingness to collaborate of our district’s teachers. This year was no different.

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There were many highlights, including watching Braedan and his elementary peers sing an adorable rendition of “Jump, Jive and Wail,” complete with a backward-leaning shoulder shimmy. But what really impressed me — and what was different from past RMH events — was the powerful and unanimous message sent from our music teachers. As the various groups moved about the stage between numbers, the teachers and Reaching Heights staff took the microphone to introduce songs and thank guests and ostensibly kill time while chairs and music stands were (noisily) shifted into place and students (quietly) filed in and out of risers. But this year, their speeches weren’t just time-fillers. They were heartfelt messages, poignant pleas to the audience members to 1) Continue to support — nay, to demand– strong arts and music programming for every child at every grade level in our schools (yes, please); 2) Take a firm stand against the excessive over-testing of our youth and the narrowing of the curriculum that inevitably attends such a short-sighted focus (yes, please!); and 3) Keep our community strong by protecting our Heights schools and approving necessary school levies (YES, PLEASE!).

Oh, I suppose there might have been some (a few?, this is the Heights we’re talking about) people in the audience who were there solely to listen to the music and didn’t want to hear anyone’s political agenda. But the reality is, there will be no music to listen to if we don’t do those three things. Our schools and our teachers and our children are under attack by forces so much larger (and so much better funded) than any of us would have dared to imagine just a few years ago. This is a dangerous time for public education, not just here where our schools have been long misunderstood and underestimated, but everywhere.

So, you know what we do? We stand up, together on a stage usually graced by world class musicians, and we sing and we play and we make beautiful music. And we do it together. In a way that says, loud and proud, “This is Tiger Nation.”

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One of my favorite moments was when 2012 graduate Geoffrey Golden, the recent winner of BET’s Sunday’s Best (“the gospel version of American Idol”) joined the current students on stage. He spoke of how meaningful and formative his early years in district music programs were, of overcoming adversity and not quitting after his first failed attempt at making it on the show, and of how necessary and important music and arts programs are to keeping kids fully engaged in school. This is a young man who you might assume would try to turn his obvious musical talent into a lucrative career, but is instead an econ major at Morehouse. Economics? Ha, I love that.

After he spoke, he accompanied the gospel choir on piano and then sang a rousing rendition of, well, let’s be honest here, I don’t know squat about gospel music, but he was damn good. As he backed off the stage to thunderous applause, he shouted something twice into the microphone. People were cheering wildly and I couldn’t hear a word he said, but was told by Dallas sitting behind me: “Your work is not in vain.”

And that, right there, those six little words, meant everything to me. This was a message to parents, who do more for their children than their children will ever realize, and who do it quietly and without seeking recognition. Your work is not in vain.  And a message for teachers, now blamed by conventional wisdom for all of society’s failings, who labor and love and bend over backwards for the students in their care. Your work is not in vain. And for those of us who do the volunteer work, the thankless PTA tasks and the equally thankless and sometimes reviled levy campaigning. Our work is not in vain.

We cannot give up on this, we cannot quit, even when the tide seems to turn dangerously against us. Even when public opinion is hell bent on using illegitimate test scores to measure our collective worth. Test scores that fail to adequately measure the quality of our teachers and the quality of our students. And that certainly — certainly! — don’t measure the quality of our music programs (among the best in the nation — why doesn’t that generate newspaper headlines, why doesn’t that count for getting kids “career ready”?).

I’ve closed out both of the two recent Heights Coalition for Public Education forums with the same words, the last in a list of ten action steps, and I think they bear repeating:

Stay. Stay engaged, stay informed, stay involved. Stay in our communities, stay in our public schools. These institutions are the cornerstones of our democracy. Moving away, pulling out, or otherwise giving up will not make these problems go away. Work with us to overcome the challenges and to celebrate our successes. Stay, stay, stay.

Your work, our work, is not in vain.

Weather is a funny thing. When you’re in the midst of it, at least when you’re in the midst of any of its many extreme forms, you feel as if what you’re experiencing is somehow special, unique. That you’re the only one who’s ever been that cold. That no other walk to school has been quite as brutal as this one. In a capital-B, capital-D Big Deal kind of way.

It’s cold outside. And, you know, that sucks. That little meme going around Facebook with the small sad soul all bundled up in hat and scarf who says, “The air hurts my face. Why do I live where the air hurts my face?” Exactly. So, we talk about it and post about it, and moan and groan and wonder why on earth we live here. Just like we did last winter. And just like we’ll do next winter.

It’s all sort of silly, but it’s real. The weather is indeed significant in that it totally affects your mood. Especially this time of year, that post-holiday dead zone with nothing ahead but long stretches of work and school, accompanied by unshoveled sidewalks and unsee-through-able windshields (I really looked for the right word there, but just couldn’t find it: opaque? blocked? impermeable?). Whatever the word for my windshield, the weather is depressing. We have hit the doldrums.

But being anti-doldrum kind of people, Mark and I have found an antidote to the nastiness of January. And so, today, in just a few hours, we’ll head over to Fairfax and call the kids out of their classrooms (“Please send Braedan and Austin to the office, prepared to leave,”), plop their stunned little selves into the car and drive to the airport. Where we’ll meet up with our friends the Schuberts. And fly to Disney World.

I am squealing inside right now. Squealing. We’ve been keeping this under such tight wraps since last September that I’ve been afraid to even allude to it in any major way. But unless you’re reading this blog on your way to Fairfax School, where you might accidentally tell my children to have a good trip, I think the secret is safe.

I’ve been incessantly hint-dropping lately, just in a playful way that they would never let them guess. “Oh, wouldn’t it be nice if we could just magically end up somewhere warmer today?” “I have a feeling this will be a good week,” and on and on. But I’ve also talked about all the fun things we’ll do over this four day weekend, like clean their bedrooms and catch up on our rest. They are clueless, to say the least.

We’ve been to Disney once, after Austin finished treatment the first time, when he was 18 months old. But he was 18 months old and has no memory of it whatsoever. And even Braedan, then just four, can barely recall anything except what’s captured in pictures. That was the trip where, one evening as we strolled through the countries of Epcot, Austin ran along behind his brother in soft-serve-soaked pajamas, and some man walked past us and remarked, all calm and casual like it meant nothing at all, “Now there’s a boy who’s happy to be alive.” And I stopped dead in my tracks and wheeled around to watch him walk off in the other direction, completely unaware of the significance of what he had said. Happy to be alive? You. Have. No. Idea.

So now we’ll spend the next five days being happy to be alive, in the happiest place on earth (and one day in Hogwarts, my geek fantasy come true). Check Facebook for videos of the big reveal, which I’m at least as excited for as I am for the whole damn trip.

No doldrums for us.

 

 

I never intended to stop blogging after Rebecca died. It just sort of happened. I’d been writing a lot, mostly about her, then summer got underway and when the next big thing worth sharing was our trip to Brazil, and when that trip included the “tragedy” of sitting on a flooded freeway for seven hours instead of watching the USA versus Germany game that we had traveled ten thousand miles to see, I somehow had enough perspective to just not write at all. And then it went on, the summer days turned into fall and inevitably winter, and now I haven’t posted in more than half a year. I almost laughed recently when someone said, “Oh, I read your blog all the time,” and I thought, “Really? All what time?”

But anyway, I’m back. With much to say, including an eventual hilarious run-down of that large and at times infuriating country to the south of us. But right now, what has really drawn me back is that St. Baldrick’s season is upon us yet again. Our 2015 event is well under way, with over 30 participants already signed up and nearly $1,500 raised (record-breaking at this very early stage of the game).

Last Thursday, St. Baldrick’s announced their 2015 Ambassador Kids to the world. I know the date because immediately after reading though their stories, I shared the news on Facebook. As always, they’ve chosen five children and teens from across the country with different types of cancer who represent the spectrum of treatment status — from the child in treatment, to the child who’s “cured,” to the one who’s relapsed, to the one with no evidence of disease. And of course, always, they choose one of the five who has already died. Because that’s the stat we all live with. One in five. Who’s it gonna be?

I cried as I read through their stories, as I always do, but I was filled with admiration for all they’ve overcome thus far and hope for all they have ahead of them. But I was also filled with something darker, a tiny inkling of dread. A nagging thought, deep inside myself, that I couldn’t even articulate at the moment: One in five didn’t seem like enough for this bunch. One in five seemed awfully lucky.

A few nights later, no wait, let me be more precise: TWO nights later, as Mark and I were getting into bed, he said, “I hate when I get these emails from St. Baldrick’s that so-and-so has just died.” “What? Who died?” He held up his phone to show a girl, 12-year old Caroline who I had just read about. What was he talking about? He is clearly confused. I had just met that girl, for crying out loud.

And I scoffed, “No, not her. She’s not the one who died, honey. It was a boy, a little 8-year old boy. I just read the stories.” As if that little fact — “I just read their stories” — somehow protected them. I mean, she couldn’t possibly be dead today if she wasn’t dead two days ago when *I* read her story? She’s not the Dead One. He is.

Well, they both are. This girl, Sweet Caroline, forever 12, was announced as an Ambassador Kid on Thursday and died on Saturday morning. Two days of fame. Two lousy, measly days.

Being a St. Baldrick’s Ambassador Kid is a fairly big deal. It’s special. Suddenly, there are thousands and thousands of people following your story, shaving in your honor, wishing you well. It doesn’t actually change anything, it doesn’t magically make you healthy. But it’s still special. And she should have had a chance to enjoy it. To revel a little in her own celebrity.

She should have had a chance to enjoy so much. And to revel in her own ordinary life.

But she didn’t. And this is why we do what we do. This is what all the hoopla is for. All the green hair, the fundraising competitions, the shamrock cupcakes, the endless emails. It’s so that kids stop dying.

When I was a freshman in high school, I took an introductory journalism course. That spring, a girl I’d known from my neighborhood went with the Heights instrumental music program on a trip to Asia, where she contracted a rare lung disease, which landed her in a coma upon her return home. She died on her sixteenth birthday. I wasn’t yet experienced enough to be on the official newspaper staff, but this girl and I had lived on the same street and had gone to the same school since our earliest elementary days, so when nobody stepped forward to write the article on her life, I did.

I sat in on the counseling sessions the school had set up for her friends, furiously scribbling down the conversations between her closest friends and her boyfriend. Then, accompanied by my mom because I must have been nervous, I walked over to her family’s house and sat at a picnic table in the sideyard to interview her parents and her younger brother. It was, to say the least, a fairly intense experience for a 15-year old, as I dug into their grief and then had to craft a story (with a strict word count) that captured all she had been to those who loved her. I was proud of the story I submitted, even though the one that was eventually published had been sanitized and read a little more news article and little less human interest.

But the significance of that experience is not lost on me as I’ve now spent years upon years writing about darkness and sadness in a way that I hope brings a sense of light and comfort to people.

Today, I was asked to write the article for the Heights Observer on Becca Meyer, who died on Saturday, less than twelve hours after turning six.

Sometimes, in our darkest days with Austin, when we thought he might not survive, I would wonder what my life would have been like if our second baby was conceived a day earlier or a day later than Austin had been. Or even a minute earlier or a minute later. What if I’d gone to the bathroom, gotten a drink of water, fallen asleep first and this child with these specific genes never came to be? Would we have been spared our great sorrow, our worst fears, his tremendous suffering? But every time I allowed myself to think that thought, it was immediately replaced by the full and unwavering knowledge that I would take Austin, with all his physical faults and with all the suffering that we did endure and that we may have endured. I would always still choose to have had him, even if it was only for a short while.

I have to imagine, that because Becca was adopted, her parents have had a similar and yet powerfully different set of what if’s to ponder. What if there was one family ahead of them on the list? What if some other child had been born on June 6 instead of June 7 and they’d been called for that one? What if her birth mother had decided otherwise? How different would their lives be? Would they be spared the unthinkable grief they now feel?

But I know without hesitation that if they’ve ever allowed such questions to run through their minds, they are immediately replaced with two unwavering truths.

One: They would always take the joy of having known this spark of a child, the gift of having loved her and been loved by her, … for the enrichment of their own lives, they would always choose Becca.

And, more importantly, two: If the child we knew as Rebecca Alison Meyer was destined to be in this world and if it was written in her genes or in her stars that cancer would claim her life, then who better to entrust her short life to than the Meyers? Who better to surround her with love and laughter and friendship and all things princess than Kat and Eric, Carolyn and Joshua? Who better to hold her, guide her, sing to her, dance with her, kiss her and love her than the family she was given? How lucky were they to have been given the incredible honor of shaping the course of her too short life? How lucky were they to have had the opportunity to fill it with so much joy? How lucky was she?

Loving her so well and loving her so much may well be the greatest burden of their lives.  But I do not doubt that it is also their life’s greatest blessing.

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This kid we can call a survivor. A four-year survivor.

Today’s scans, which included blood work, a chest x-ray, EKG, ECHO, and abdominal ultrasound, all came back clear. Unchanged, no evidence of disease, and (my fave) unremarkable. Which always strikes me as ever so remarkable.

As we walked out of the Clinic hand in hand after five hours of appointments, he swung my arm and casually said, “That was fun.” And he meant it. Which also strikes me as ever so remarkable.

And most remarkable of all is that in 365 days, two measly scans away, we’ll be able to use a whole different C word in reference to Austin:

Cured.

We may never get to use the word “survivor” to describe Becca Meyer. But let me tell you, that girl is surviving.

Yesterday, today, and, we certainly hope, tomorrow, she is living a life so filled with love and laughter and friendship and family that some may be rightfully envious of her. She is alive and she is thriving — running, jumping, playing and doing it all with a full-sized dose of spice and sass.

Take today, for instance. Today was Purple for Becca Meyer Day at Fairfax School. The Student Council created a long list of Spirit Days for the month of May and Braedan’s suggestion was this one. It was carefully planned for a Thursday because Becca’s at a hospital in Pittsburgh every Monday, Wednesday and Friday morning. I knew that Braedan was nervous that people might not participate, or that it would only be the girls in purple, or that (worst fate of all) Becca wouldn’t notice. He wrote his own message to read over the PA system on Wednesday afternoon reminding people of the day and why it was important, closing with, “It doesn’t matter how you look because you’ll be doing something good for someone else.”

We found purple t-shirts in the bottom of my kids’ drawers and were all ready. And then Becca threw up yesterday. On her car ride back from Pittsburgh. Which could be a sign that the time had come, that the end was about to begin. As I put the kids to bed last night, I debated whether I should tell Braedan that tidbit of truth to prepare him for the possibility that she might not be at school on her very own day. But he was riding high after a super successful trumpet quartet with three of his best friends, and I was holding tight to the hope that Becca’s was just a passing sickness, some normal explanation for normal vomit with a normal outcome.

Well, she was at school today, in head to toe purple, as were many of her schoolmates. I was most impressed with the number of kids, boys and girls alike, from kindergarten through fifth grade donning that royal color. And Braedan was most pleased. And — all that really matters — Becca was most pleased. And full of spice and sass.

At dismissal time, she marched out the door arm in arm with her best friend since birth, both purpled to the hilt. They encountered a beloved teacher in our building, who had sprayed her hair purple for the day, and she pointed it out to Becca, who promptly stuck her hands on her hips and said, with a personality bigger than her poofy princess dress, “No. You. Didn’t. That’s PINK!

Today, she is surviving.

I lied to Kat Meyer. It was early last fall, after the kids had gone back to school and her family was briefly home in Cleveland during their months-long stay at the Children’s Hospital of Philadelphia. I told her, expert that I was in such things, that the year ahead would be exhausting. It would be sad, hard, frustrating, terrifying, surreal and completely and utterly exhausting. But then it would be over. They would pull together and they would do this hard thing and then they would be okay again.

And there was my lie.

I only said it because I believed it was true. That first critical surgery, where doctors cut open the skull of her five-year old daughter to remove a “bad rock” from her brain, had been successful. And so they would move on, going through the miserable motions that are childhood cancer treatment, and then they’d get on with their lives. Becca would get on with her life. Or so it seemed.

I spoke with more truth recently, after they discovered her cancer was back and treatment options nearly nonexistent, when I told her that she had entered a realm I knew very little about. Because, while I’ve heard the words “Your child has cancer,” on three separate occasions, I’ve never heard the words, “And there’s nothing we can do about it.”

Quite honestly, I don’t know a thing about death. Not in any real sense at least. And yet I’ve become this de facto expert, helping people prepare their children, helping people grieve and heal, planning and organizing and gathering, comforting the mom whose husband died suddenly, giving advice to the friend whose mother is getting close.

But I haven’t experienced any of it myself. I’ve never lost anyone. Besides my grandparents, I haven’t lost my parents or my in-laws (nor even had a significant scare). I’ve never lost a cousin or a sibling or even a friend. I’ve barely experienced death at all.

I have glimpsed it though. Like a shadow lurking behind me. I’ve felt it there, hovering over my shoulder, slipping just out of view when I turn to stare it straight in the eyes. It’s been present enough so I can smell it and almost taste it in my mouth. I’ve had those words, “Palliative chemo” uttered to me, but only in response to a What If question (“What if this treatment protocol we’re about to start doesn’t work?” . . . “Palliative chemo.”) I smelled death around me for the sixteen days back in May 2012 when we thought his cancer had come back for a third, and final, time. Just enough so that I’ve vacillated between two equally horrible extremes: One in which, in strange moments of calm, I could almost allow a slow but steady acceptance to seep through me. I could say to myself, “Okay.  This is coming. This is really and truly happening. And we will make it the best, most peaceful and most comforting death ever. And then we will pick ourselves up and we will move on. We will be okay.” And as soon as I’ve dared to allow such traitorous thoughts into my mind, they are knocked out with pure and absolute refusal. This thing will not happen. I refuse to allow it to happen. “No, you will not take my child. I WILL NOT let this happen. I will fight, scream, beg, plead, claw my way to him and I will hold on with a grip so tight that nothing, no one, will be able to pry him from my arms.”

I imagine Kat and Eric go through that particular roller coaster ride several times each day now, as they watch their seemingly healthy daughter run around the playground, perform in the kindergarten concert in full princess attire, squabble with her friends over toys. And yet they know, they know what is coming. What might strike on any given day. Death is lurking in the shadows, hovering over their shoulders. And if they fight it, refusing to allow it to come into full view, then I wish them all the strength and luck in the world. And if, given their sad reality, they accept their fate with broken hearts, then I wish them all the strength and luck in the world.

 

 

 

This might be part one in a series titled Death in the Age of Facebook, about which I have a fair amount to say.  But let’s start with this:

Positive thinking does not cure cancer. A good attitude will not help you survive.

It’s a lovely idea, of course, one that makes us feel like we have a tiny bit of control over our destinies. Be strong, keep your chin up, and this too shall pass. Only that’s not true. And not only is it not true, but it’s harmful and hurtful to those who don’t survive, those whose cancers simply can’t be beat with a smile and a sunny outlook.

Look at the language we use around cancer: This person “succumbed” to the disease, while that other one “overcame” it. Patients are warriors fighting a battle that requires strength and courage, a willingness to charge forward and face any challenge, no matter how terrifying and no matter how futile.

There is a lot about Facebook and social media that is wonderful when you’re faced with a crisis. You’re able to connect with others who’ve experienced what you’re going through, you’re able to share information in an honest and direct way with large numbers of people, and you’re able to draw strength and love from the strength and love of those around you. The online response, even if it’s just the click of a Like button, can be overwhelming and heart warming. It’s a sign of the invisible thread that ties us all together, caring about one another, wishing each other well.

But it also gives us a glimpse into how differently people handle the tragedies that befall us, tragedies like death sentences for five-year olds. Now, I know these are treacherous waters to wade through, that no one truly has the right words, that no one can take away the pain and suffering of the family, no matter how badly they may want to. And I know that any of us might say the wrong thing at the wrong time, in a misguided attempt to be helpful.

But one thing that I wish no family would have to bear is the idea that they should “keep their heads held high” and not “give up.” As if they themselves, their grief and their despair, are somehow responsible for their lack of options. Sometimes, as horrid as it is, there simply are no options. Or no good options at least. Now I’m not saying give up; I believe in holding on to hope until the very last second. But be sad. Let your head hang down and cry when you need to because this is devastating. There is no “chin up” attitude that can bolster a family faced with this reality, no “rah rah” mentality that can keep death at bay.

Although I sure as hell wish there was.

 

 

Last night, after I finished entering in all the cash online and had made my final calculations, I was so excited to announce that our event raised a grand total of $112,793, when I read the news of Rebecca Meyer’s latest MRI.

And it wasn’t good.

And sometimes it feels like we just don’t do enough. Like we just can’t act fast enough. All those thousands of dollars raised in her name and in her honor and what good will it do?  Sure, it may save some other child down the road and yes, of course, that’s noble and right and ultimately what we all want, but at this moment, for this child, for this family, they just want her. They’re not thinking about the new research we’ll get in two years or five years or ten years.  They need it now, they need it tomorrow.

You may be scratching your heads and thinking back to Sunday’s event and wondering, “Wait…was she there? Did I see this sick girl?” Well, yes, she was there. But no, you didn’t see a sick girl. She was well. Happy, vibrant, head full of hair, face full of light. She was very, very much alive.

She’s here last Friday, in pink head to toe, sticking out her tongue like any five-year-old should:

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And here again, on Sunday, watching with glee as her older sister shaves her head in her honor:

And again, with her bald schoolmates around her (goodness, these Fairfaxians like to stick out their tongues, huh?):
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She is alive, goddammit, and she deserves to stay that way.

A couple of times on Sunday, I referred to people’s inner beauty, as in, “These girls are showing us what it means to be beautiful on the inside,” implying, of course, that they were no longer beautiful on the outside.  But I was all wrong.

They are indeed beautiful on the outside. I just needed my own definition of beauty challenged by them. By you. All of you.

Sunday was full of beauty; it was all around us.

This is the beauty of family: Father and son working together to save one of their own (and remembering to have fun in the process).

And this is the beauty of family: A father shaving in solidarity with his son, whose bald head took some getting used to.

This is the beauty of small people doing big things:

This is multiple generations of beauty: grandmother and granddaughter watching the mother shave her head.

Contemplation can be beautiful:
Courage can be beautiful:
And pride can be beautiful:
Beauty is young:
And old (relatively speaking, at least!):
And male:
And female:
And this is the beauty of friendship:

If you want a few more examples of beauty, check out the first wave of photos here. More to come shortly.
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