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.

Over the past week, I’ve been called an inspiration, a powerhouse and — my personal fave — a force of nature. While that all makes me feel really, really good, this is not a one-woman-show, people. There is an army of volunteers who stand behind me and beside me without whom our event could never happen.

First of all, the barbers. They are on their feet shaving head after head after head for hours on end. They hunch over the little kids and let the very littlest stand up in the chairs. They calm the nervous shaking bodies and they comfort the crying. They laugh and they cheer and they do it with style.

So, a most enormous and heartfelt THANK YOU to Alex Quintana and his crew from Quintana’s: Theo, Mike and Jessica.

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And, of course, to the fabulous Shawn Paul, aided and abetted by Bethany and Angela.

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Thank you also to Rachel and Megan from Kreate and Rick, Laura, Racheal and Caroline, without whom there would be no bald heads (and what would be the point of that?).

Thank you to my tireless Treasurers and Registrars: Becky, Ann, Christie, Nancy (mom), Mark (honey), Jennifer, Julie, Julie, Kristy, Brenna, Ashlie, and Melissa. No one could check in and no one could give money if it weren’t for your hard work (and what would be the point of that?).

Thank you to everyone who worked at the Bake Sale table, especially Shari, Sheryl, Joe, Simon, and Logan, and of course, to everyone who baked for the Bake Sale, even though I have no idea who you are or what you brought. When I headed over to start emceeing, there were maybe two items on the table and when I finished four hours later, there was only one item on the table and I asked a volunteer if there had been any food at all. “Oh yes!” she assured me, and she must have been right because it brought in an additional $338. Nicely done on that!

Thank you to Simone Quartell for donating the American Girl Doll and to Nancy, Nicole, Kristi and Amelia for selling raffle tickets. We made one little girl very happy, plus raised another $478 for cancer research.

Thank you to anyone and everyone who stepped in and did jobs small — sweeping up all the hair off the floor (Nancy and Caroline) — and big — taking all the beautiful photos which you will soon get to see (Dallas and Sagi).

Thank you to the City of Cleveland Heights for so graciously hosting us year after year.

Thank you to Jason for helping me celebrate my own knight in shining armor, Mark, as he was inducted into the Knights of the Bald Table. I think your bagpiping skills served a recruiting tool for next year and the year after that as we now have lots of little boys (and girls) eagerly awaiting their own knighthoods.

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I couldn’t hold the microphone, the St Baldrick’s-issued wand and the script all at the same time!

And, of course, without question, the biggest, deepest, most well-earned THANK YOU to all the men, women, boys, and girls who shaved their heads or donated their locks on behalf of sick children. The entire room was overflowing with raw and honest examples of generosity and kindness. The incredible bravery of our shavees was matched only by their pure joy at having done something so special.

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This is a composite of kids from Team Fairfax centered around Becca, in whose honor they all shaved. And, yes, those are four GIRLS in the pics on top, demonstrating the truest meaning of friendship. Braedan happily reported that no one was made fun of at school today (and good thing because if they were, I would have marched my ass in there and gone house on those kids whose classes I spoke to all day Friday) and that they were congratulated by many, many, many. He feels like they’re all part of something bigger, like they’ve shared an important life experience that has brought them closer (“even,” as he noted tonight with some amazement, “the girls”). It is a powerful lesson these children have learned together. And I am so glad to have been part of it.

I have a thousand other stories to tell and about that many photos to share so check back in the next few days. But for now, I simply say Thank You.

I am beyond exhausted so this will be the short one.

But I am also beyond thrilled and beyond touched and beyond awed by what I saw today. The incredible outpouring of support and love, friendship and bravery, kindness and generosity left me breathless.  I am so honored to have been able to bring this event to so many people and I am so moved by all those who have embraced it with such enthusiasm.

As of this moment, counting the $101,116 we’ve raised online and the $2,450 check we expect from the lunchroom competitions at Roxboro Middle School, and the Bake Sale and American Girl Doll proceeds, and the cash and checks turned in today, we should (at this moment in time) have raised $108,257.

Wow. Just wow.

My local readers: Please promise me that tomorrow, wherever you go about town, if you see a bald man, woman, boy or girl, you stop and tell them good job.  Good job, my bald friends, good good job.

In four more days, I will be surrounded by bald heads. In fact, many of you reading this will be surrounded by bald heads. In addition to the 160 registered participants at my event this Sunday (you read that right: 160 participants!), another 114 students will shave at University School on Friday (and yes, as of this moment in time, we ARE beating them in the fundraising department), plus 56 people at Rainbow on Friday morning, 180 in Rocky River on Saturday and 70 more at A. J.Rocco’s on Monday. So we should ALL be surrounded by bald heads by this time next week.

What an extraordinary year this is turning out to be.  I am completely blown away by the enthusiasm and generosity of spirit that this has generated in our community.  We have four elementary teams from the Cleveland Heights-University Heights district, plus Roxboro Middle School and two teams at Heights High, in addition to four elementary teams from Shaker, one from Lakewood and another 24-member strong team from Gesu School in University Heights.  Imagine what those school hallways will look like on Monday as those brave children walk proudly to their classes.

Oh, and have I mentioned the money we’ve raised? My initial goal was $60,000, but we are now over $70,000 and I think I need to up our current goal of $75,000 yet again. We have blown past every expectation I’ve had for what this year could become. More people, more schools, more money. I am so so thrilled (and a little nervous about how the whole thing will roll out on Sunday), but mostly I am moved.

I am moved by the number of young children stepping forward to stand in solidarity with those in treatment. I am moved by the number of girls and women (19 in all!) who are loudly proclaiming that how they look does not define how beautiful they are.  I am moved by the number of teachers sitting side by side with their students as live out this lesson in generosity. I am moved by the mothers and fathers and sister and brothers and friends of survivors and those currently in the fight who are saying, “You don’t have to go this alone. I am right here with you all the way.” I am moved and deeply saddened as I read through the donations on my participants’ pages and see how many people give “in memory” of someone.

We have lost too many people already. All of us have: parents and grandparents, siblings, friends and spouses, and — saddest of all — children. It doesn’t have to be this way. We can do better. The grants that St Baldrick’s awards to doctors and researchers truly do better; they are making a difference. And so are all of you, by shaving, by cutting, by volunteering, by raising money and by giving money. We are doing better.

www.stbaldricks.org/events/clevelandheights

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