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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 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.

 

 

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.

Thank you, thank you, thank you. To everyone. To all of the hundreds of people who donated money on the heads of our shavees. To our tireless barbers from Quintana’s and Shawn Paul for putting everyone at ease and working without complaint in such good spirits for so many hours. To Mike Kenney who entertained the kids with juggling and balloon art. To all of my friends (including both my mom and my honey) who volunteered their afternoon to check people in, collect cash and checks (tougher than it sounds), sell baked goods or take more than 1,500 pictures (Dallas was a busy woman!). Thank you to everyone (I have no idea who) who baked those yummy looking treats, which brought in an additional $220. And of course, the biggest and most enthusiastic THANK YOU to every man, woman and child who shaved their head or cut and donated their hair.

As of this moment in time, we have raised $43,101.71. Yup, that’s right: seventy-one cents. I wasn’t kidding when I said every penny counts. And the total continues to rise online. We may reach my original $45,000 goal after all.

That is really something. Really really something to be proud of, for all involved, certainly not just me. And more than anything, everyone should be proud of the very brave souls who climbed into those barber chairs and allowed strangers to shave their heads completely bald. It is not a small thing to do. It is a big thing, even for the men with little hair. Even for the littlest kids who don’t care what they look like. Especially for the women and girls who do. It is a serious and powerful statement to make to the children currently battling cancer. And to all those who love them.

I’m only gonna mange to tell a couple of the stories tonight, so you’ll all have to check back tomorrow. But let’s start with the father-son team who went head-to-head in a heated battle to see who could raise more money.  The younger won (ah, youth always wins, doesn’t it?), by about $80, but together they raised more than $6000. Now that’s a competition we can all support.

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We don’t actually know them all that well, but when asked why they shave, the father simply said, “We do this for Austin.”

And then there was Erica, who emailed me out of the blue a few months ago asking if women could join our event too. “Sure,” I told her, knowing women generate lots of buzz (and donations!). She wasn’t the first or only woman to sign up, but I could tell from the beginning that she was serious about this. She was driven, as I mentioned in an earlier post, by an intense fear that one of her young children might one day have cancer. And like a true hero, not one spurred into action by disaster that’s already struck, she saw this as an opportunity to do something before she was ever impacted. To do something right now. And boy, did she ever. Erica raised more than $3000, taking the coveted first place fundraising spot for our event. And she did it with courage and grace and beauty.

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There were so many more fabulous parts to the day but a picture is worth a thousand words and I have a few hundred pictures, so I’m going to add some more here and then post again tomorrow, including about a mother-daughter team and all the CHUH kids. I’m still working on a public photo gallery on Flickr, but it’s not quite ready. For now, I’m inspired by this image that was posted on the St Baldrick’s Facebook page last week:

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And here are our very own, “Oh my god, I’m actually doing this!” photos:

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And with those slightly stunned, pretty excited and damn proud faces, I leave you. But only until tomorrow, I promise.

I guess that last one should have been titled The Year in Picture. This one can be the Year in Pictures.

2012 started with a family trip to Jamaica, with requisite swimming, horseback riding and playing with cousins:

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Once back at school, Braedan was the youngest kid in the district to join Ski Club. He enjoyed it immensely despite record little snowfall:

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At the end of February, Mark and I went to Charleston, South Carolina with friends. A wonderful weekend in a beautiful and charming city:

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March was dedicated almost entirely to St. Baldrick’s events, from the Bluffton Basebald trip to our Cleveland Heights event to the always fun downtown head-shaving. I was surrounded by bald people all spring long, which could not have made me more proud:

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Then we ventured off to Colorado for a spring skiing adventure, complete with an ambulance ride to the medical center for Austin’s low oxygen levels:

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We fully expected May to kick off the grand two-year cancer-free celebration, only to instead plunge into sixteen days of darkness and despair upon believing Austin’s cancer had returned yet again. A lucky double rainbow and a long overdue MRI provided intense relief at the end of the month and our good-year-gone-bad reverted to great.

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Then it was summer and all the joyous relaxation that comes along with it, including endless hours of baseball. baseball, baseball, swimming and waterskiing in Chautauqua and biking through Europe:

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And of course, our tenth wedding anniversary and our super celebration-of-everything party:

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Fall meant back to school for Braedan and off to school for Austin:

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More travel, this time for Mommy and Daddy on their own:

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Plus birthdays and fall sports, school events and some “little” surgeries, a lot of lost teeth and holidays, holidays, holidays. Of course, this was all interspersed with fighting, crying, whining, random ailments and injuries, complaints about school and battles over homework, boredom, sibling rivalry and the like. But I suppose that’s what makes it all worth it. The year ended with a few days of skiing in Chautauqua in near magical conditions:

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It was definitely a year to remember, filled with significant milestones and an awful lot of globe trotting. But what matters most is what remains: health, happiness, family, friends, luck, love, laughter. We’ve got it all.

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Whatever you celebrate, wherever you are . . . be a light in the darkness.

From a recent post I wrote for St. Baldrick’s:

Lighting the Darkness

Lighting the Darkness By Krissy Dietrich Gallagher, mother to Austin, 2012 Ambassador Kid

My grandfather died on December 21, 1982. The shortest – and darkest — day of the year. Cancer, of course. My brothers and I drove with our dad from Cleveland to Massachusetts for the funeral, where my mom had been for the previous week. It was the first time we’d ever not spent Christmas tin our own home, where my grandparents usually came to stay with us. After the funeral service on Christmas Eve, my grandmother went to lie down and my brothers and I ended up in her basement, one of our favorite places in her house (we’d spent many vacations roller skating around and around on that smooth concrete floor). But this time we searched through her neatly stacked boxes until we found some labeled “Christmas.” We quietly lugged everything upstairs and by the time my grandmother awoke from her nap, we had decorated a small fake tree in the living room and hung stockings over the fireplace. Just because our Grampy was gone didn’t mean we had to give up Christmas.

She talked about that day until she died, a physically broken but emotionally whole old lady, more than twenty years later.

To me, the holidays are about finding the light in the darkness. Placing candles in the window to light the way for those outside on these short winter days. Bringing the evergreen tree inside when all else is bare, to remind ourselves that life is still out there, that spring will eventually come.

When your child has cancer, the light and the dark, the circle and the cycle of life, feel ever more important. Everything is suddenly meaningful; little things like eating dinner as a family and big things like spending Christmas at home. When my Austin relapsed at age 3 in December 2009, the dark days were upon us in more ways than one.

Relapse is scary. Scarier than the first time, for us, at least. It means that that whole army you employed, the full-on assault you launched on your child’s small body, simply wasn’t enough. It means that cancer was stronger than the strongest medicines. And that is terrifying.

But you do it again. You load a fake Christmas tree into the car and you decorate every inch of that hospital room with anything sparkly and shiny you can find. You light the darkness because there is simply no other way. You hold on to hope and you force yourself to remember that spring will come.

Even on the darkest days.

We actually went home that year, a few days before Christmas, and returned to the hospital for chemo and radiation shortly after. But we spent Christmas Eve surrounded by family and friends and we celebrated all that we had, with full hearts. We awoke in our own home, a family of four, to open presents in front of the fireplace, to snuggle and laugh and take lots and lots of pictures. Never far from our minds was the thought, that fear that is impossible for the parents of the sick to shake, that this might be the last Christmas we would spend together.

And now, here we are, three years later, a family of four, alive, intact, together. Two little boys quickly morphing into big boys. Healthy and happy and pretty darn close to normal. Lighting the darkness is their own special ways each and every day.

I’ve ended my book three times. The first in March 2008 after Austin’s Broviac line was removed and the first time he was declared “cancer-free.” Then again in April 2009, after what we now call “the almost relapse.” And finally — or what I thought was finally — in August 2010.

I’m going to share them all here … as long as you promise to still buy the book! (I don’t exactly think I’ll be giving anything away.) But they are informative in their way. Ironic, especially the last one, but hopeful.  And hope is what we’ve got right now.

Wednesday, March 19, 2008 1:29 pm

It is not lost on me that tomorrow is the first day of spring. We started this journey in the dog days of summer: a swelteringly humid August in Cleveland. Walking around the air-conditioned hospital in a hoody sweatshirt zipped right up under my neck, hands stuffed into my pockets, not aware of whether it was night or day let alone warm or cool. And then I’d have a chance to walk outside, through that revolving door, into another world complete with its own climate. Lose the sweatshirt, search for sunglasses, wander past the innocent guy selling hotdogs and university employees preparing for the onslaught of new students and their families in the weeks ahead.

Then on through the fall, a vibrant college campus, glorious autumn colors, young people blissfully unaware of the horrors that go on inside that huge building looming over their campus. Our toughest days. Dark, dark days. But it was still warm and we tried to make up for what we’d lost of summer, strolling Austin from the hospital around the pond at the Art Museum, tossing coins in every fountain we passed, wishing, always wishing.

Into winter, the holidays alive with hope and possibility. Twinkling lights and happy wishes reminding us constantly of all we have to be thankful for, of all that others have lost. The final chapter of this story dragging on much like Cleveland winters do. Learning that the Broviac would stay in for extra weeks and possibly months felt like Groundhog Day with a poor outcome—how much more (winter, cancer) can we take? How much more (snow, sickness) will come our way?

But spring is coming, at least according to the calendar. New life, rebirth, blossoming. Austin is going to sprout up like a weed in the months to come, I have no doubt. He will finally outgrow the onesies he’s been wearing since last summer, will learn to swim, will experience the freedom of running naked, will begin to forget.

We have come full circle, through the seasons of the year. We hope beyond hope that our cycle is over. But Mark and I will never forget.

Today was easy. We arrived in pre-op around 8:30 and spent a good stretch of morning just waiting (so much of this has been about just waiting). Austin was a little grouchy because he hadn’t been allowed to eat breakfast, but we managed to distract him with toys and tickles. When we changed him into the hospital gown and removed that carefully wrapped ace bandage from his chest, he nearly pulled the Broviac out all by himself! Then the docs used it one last time to administer propofol making him gleefully oblivious as masked strangers wheeled away from us. We were back in post-op holding him a mere forty minutes later, nothing like the eight-hour surgeries we’re all used to. He sports a regular little band-aid over a tiny hole, no stitches, not much of a scar. Just like that, whoosh—all better.

And then we walked together down that hall leading away from Pediatric Surgery one last time. Feeling lighter, satisfied, content. We stood at the elevator, waiting for our chariot to arrive and whisk us far far away. The elevator stopped, door opened, another family got off as we got on. We didn’t know them and yet we knew them all too well. For one it ends and for another it begins, this cancer roller coaster does not stop for long. Mark shot me a knowing glance and we squeezed hands and vowed once again to never forget:

We were, we are, and we will remain the luckiest.

And then, one year and thirty pages later, this ending:

Mark and I step out on to the back porch and see the boys on the swingset. Braedan is pumping ever higher on the swing, feet reaching for the treetops. Austin is trying yet again to master climbing up the rockwall. He secures one foot and makes it a few inches up, only to lose his balance and slip back down again. But he doesn’t quit, doesn’t give up. He just brushes the wood chips off his hands and tries again. Nothing will keep this kid down.

He climbs, one small step after another, and I start to head in that direction, fearful he may fall too far and get hurt, but Mark pulls me gently by my sleeve. “Let him do it,” he whispers. And he’s right. We’ve held him this far. Let him do it.

And he does. Of course. He makes it to the top, scrambles to his feet and sees us watching. “Awtin do it all by de-self!” he shouts with pride.

So we clap, like normal parents do when their normal kids achieve some normal new skill.

I start again across the yard and Austin zooms down the slide, skidding to stop at the bottom before picking himself back up and bounding through the grass, little feet trying to keep up with his smiling face and head lunging forward, and he dives into my arms.

I swing him around, holding him tight while he laughs. And on one spin, I see Mark, my solid steadfast partner, watching us happily. And on another spin, I see Braedan, my capable, confident child, swinging happily.

We are a family of four. We are alive, intact, together.

And we will be okay.

And finally — I still hope, finally — this one:

I’ve ended this book twice already. Once with the words, “We are the luckiest,” and once with, “We will be okay.” I don’t suppose I can repeat with any credibility that we’re the luckiest. We’re lucky, I’ll give you that, definitely lucky. With all the horribly unlucky things that have happened to us, we’ve once again come out the other side. We have avoided the worst fate. And the second worst fate, kidney failure, which falls quite a few rungs down on the ladder-of-the-unbearable from the first worst fate. I’m optimistic, always hopeful. But not stupid. We’re not the luckiest.

But we will be okay. I know that. We’re not done, I know that too; the future holds many perils yet. His cancer could return, in his kidney or liver or lungs. Next week, next month or next year. Or a secondary cancer could catch us off guard ten years down the road when we’re more worried about our boys, suddenly young men, driving too fast or drinking too much than about shadows and lesions. And then there’s that kidney. We’d always believed he’d lose it during the years of puberty. Now that seems a luxury. It will not last forever, that would be too much to ask, but I do hope he can avoid dialysis entirely, move straight from kidney failure to transplant, only allowed if he’s two years cancer free. That’s the hope I’ll hold onto.

So it’s not over. Maybe we’ll get one good year, maybe five, maybe more. And then we’ll be driving right back down that hill, searching again for a parking spot, surely there’ll be more construction, maybe even a new parking garage? Faces will have changed, more wrinkles, graying hair. People will peer at us and wonder where they’ve seen us before. “Austin Gallagher, bilateral Wilms,” that’s how I’ll introduce us. “We were here back in the 00’s” (is that what we’ll call them?). Somehow that most unnatural thing—a sick child—will become our normal again. But for every moment until that moment, we will live. We will live and we will laugh and we will love a whole heck of a lot. And when that moment arrives, we’ll hunker down and come together and rise up and we’ll get through it. Again.

Because we will be okay.

It was wonderful.

In addition to all the time I’ve spent preparing our final paperwork today, not to mention being distracted by the continuous updates and beautiful photos posted on Facebook, the real reason I haven’t updated yet is that I don’t even quite know where to begin.

I guess I’ll begin with the most obvious words: THANK YOU.

Thank you to absolutely everyone involved in every way. Thank you to my tireless volunteers, the beautiful registrars who welcomed everyone to the event: Becky, Ann (Austin’s old nurse practitioner, who’s not old at all) and my mom. Thank you to the brilliant and trustworthy (and also beautiful) treasurers who collected all your money: Julie, Brenna and Mark.

An extra thank you to Mark for doing every single other thing I asked of him, including not complaining about the state of our house over the past week or so. Instead, he up and mopped the kitchen floor on Friday.  Love that man.

Thank you to the happy faces who sold (and gave away) the delicious treats from our Bake Sale table: Betsy, Luci and Peg, and my mom and dad.  And thanks to the talented bakers — I don’t even know who made all of that food, but everything I saw (or tried!) was fabulous. We made an additional $213 (thanks to people who read my sign):

Thank you to the City of Cleveland Heights, who were gracious and supportive and easy to work with, every step of the way.

Thank you to the endlessly hard-working women of Cut Hair Studio: Laura, Breanna, Mandy and Britney. You worked quickly and tirelessly and put everyone at ease.

Thank you to Dallas, who took all these beautiful pictures and many many more. I will upload them all over the next day or two to a public site so everyone can browse them and even order some if you want. Dallas, as with everything you do, these are just perfect.

Thank you to Balloon Bender Dave, who I never met but I could see him there in the back of the room entertaining the kids. Thank you to Faith and the kids from the MacConmarra Irish dance Academy, who drove all the way from Akron to show their moves and add a bit of Irish flair to our event.

Thank you to the Heights High Singers who got short shrift because we were so engaged in the head-shaving when they arrived that we simply didn’t give them the attention they deserved.

And now … now that I’ve warmed myself up a bit, now it is time to say thank you to the incredible and incredibly brave shavees. Oh, I wish Braedan were still awake because he’s my walking thesaurus and I don’t know how many times I can use the words wonderful and generous and fantastic and brave and, oh what else would he say? Maybe stupendous and stellar and spectacular… Inspiring and uplifting and moving. Heroic. You were all all of those things.

Kid after kid, some seeming much smaller than they had just a few days earlier, walking right up to those seats and hopping up and scrunching their little eyes shut as the hairs began to drift down their faces. They sat still, with very few tears, and let strip after strip of hair fall to the floor. And they were so proud; those bright clear faces, no longer hidden behind shaggy bangs, just beamed. They beamed.

So many parents told me what I already knew, that this was an incredible and rare opportunity for these kids, some as young as three, to truly make a difference, to feel the impact they’re having on the world. Those little kids impacted their world.  That’s a big deal.

It wasn’t just kids, of course. We had several adult shavees, including a couple of fathers who shaved alongside their sons, beautiful images of families doing something big and important side-by-side (which is exactly where we should be when we do things big and important).

There was a sweet older man who stopped me on the way out to say that he’d sent a message to his brother to tell him what he was doing, only to hear back that the brother had already signed up for an event wherever he lives, somewhere like Florida, without knowing!

And, of course, there was Kristi. I knew it would be a big deal, for me and for everyone there, but I can never quite predict which moments are going to get me. This moment got me. As I started to introduce her, right in the beginning because she was afraid to wait around too long and had requested an early slot, I just lost it. I couldn’t even begin. I pulled it together but I’m not even sure what I said, except for leading the crowd in a brief — but I hope rousing — round of “Glaaaa-sier! Glaaa-sier! Glaaaa-sier!”

I know that I did say what a hugely powerful statement she was making to all the young girls gathered there, especially her students. In fourth grade, they’re right at that age when physical appearance starts to take on an enormous and often unfortunate value in their lives. Here was a role model telling them that there are more important things in life than having nice hair:

I know for a fact that at least one of these sweet girls is thinking seriously about shaving her head next year.

Now that was the only moment, nope, not at all. As you know, there was a woman, a fellow Fairfax mom, who shaved her head on Austin’s behalf two years ago. You can read that story here, because that was definitely another St. Baldrick’s high. This year, her three sons, in second, sixth and eighth grades, shaved their heads:

 

As soon as they’d finished, I had turned away from the seats for one brief minute, when Mark came and tapped me on the shoulder, urging me to look back.  There, scrambling into the barber’s chair, all eager and certain, was their little sister, sweet four-year-old Leah, pigtails and all. She had been toying with the idea of shaving over the past two months, one day she’d want to join her big brothers and next door neighbor, the next she’d rather be Rapunzel. But after watching her three heroes and then seeing Kristi shave her own head, well, that did it … Leah was in.

And, if you can believe it, that’s still not all. There was a mother-daughter team who shaved together this year for the second time, in honor of their little cousin, who lost her battle at age two.  Well, it wasn’t until I announced them and mentioned the girl’s name that Ann, the “old” nurse working the Welcome table, realized she had treated that girl. Oh, there were lots of tears and hugs following that one. Peg, the mom, had emailed me a few weeks ago to see if I knew of any children who had survived cancer who might help shave her head. Uuuuhhh, yeah, I think I know one of those:

What a day. There’s still more, including countless more pictures, and links to all the media from yesterday.

But, for right now, all I can say is THANK YOU.

Since the outpouring of potential volunteers has been — ahem– rather slim, let me calm your fears.  Neither the Treasurers’ nor the Registrar’s jobs will take much of your time prior to the actual event.  I will do all of the necessary communicating with shavees in the days and weeks leading up to the event, making sure they’ve completed the proper paperwork, encouraging their fundraising efforts and so on. You would just need to study your list of responsibilities beforehand and then be prepared to work one long and tough day.  The Registrar will basically be sitting at a welcome table signing people in, making sure that everyone under 18 has a parental consent form signed and an official shavee number assigned to them and the like.  The Treasurers will need to be able to quickly separate out the various donations people bring with them the day of the event (although, like I said, most donations are made ahead of time online). St. Baldrick’s provides very specific instructions and forms and envelopes for each type of donation (cash, check, general donations, donations to teams or individuals, etc) and each thing needs to be properly identified and filed. I am happy to take on the bulk of the responsibilities before and after the event, but know that on the day of, I’ll need to be emceeing and overseeing the entire enterprise.  Oh, and (a bit of extra pressure now), the Foundation won’t mail out our promotional materials (and just wait until you see who’s featured on them!) until we have at least one Treasurer registered.

And now, for the fun stuff: For the last two years, Braedan and Mark have shaved as members of Team Austin.  Well, we’re having a Beatles moment and this year they’re splitting up.  Braedan would like to form his own team of friends and classmates, so if you count Braedan among your pals, please consider registering for Team Braedan. And Austin is also hoping to convince many of his friends and classmates to shave alongside him as members of the latest incarnation of Team Austin.  Mark will be shaving the following week at AJ Rocco’s for Team Gallagher and already has several members of the 2010 team, including one woman, considering signing up again.  I am sure we can encourage a bit of friendly (I hope!) familial competition around this one, so pick your favorite Gallagher and hop to it! I promise, your hair will grow back . . . .

We have been buried in the flurry of holiday activities lately. Shopping and wrapping, addressing and mailing, baking and baking and eating and eating. The boys and I baked a holiday breakfast of muffins and breads and fruits to deliver to the Oncology Floor recently. (There was no blizzard-induced walk home after this one, thank goodness.)

That same day, we were entertained by 120 first and second graders singing their hearts out in their production of “Flakes,” a very sweet song and dance concert in which each second grader recited an individual line.  Below is the one and only Braedan, whose pretty face is hidden by his snowflake cap. His part came in the middle of a story line about how each snowfake is different, even though, at first glance, they all look alike.  The other kids had lines like, “Some are very short and some are very tall, Some have lots of hair, others none at all.” But no line was so perfectly suited to its child actor than Braedan’s:

(Having a little trouble with the technology here — will fix on Monday.)

In case you weren’t able to understand him (even though he was the most understandable of the bunch!), he said, “Some of them are singers, others like to dance. Some would play golf every day if their spouse gave them the chance.” What you don’t get in this video from the afternoon show is the appreciative laughter of the parents at the evening show.

Thursday, we celebrated his birthday at school with mitten cookies, a reading of The Mitten Tree (a truly lovely children’s book if you need a new one) and some mitten measurement. Friday, the parents hosted a second grade brunch in place of a traditional class party since there were two assemblies in the afternoon.  We made a zillion pancakes and waffles, with the help of a lot of extension cords, and were thankful that no one brought unasked for candy and cookies.

And today, my Braedan is eight and the real whirlwind of the holidays is upon us.

So, we’re busy and more busy and busier yet.  But we do take the time to appreciate what we’re not doing this holiday season: We’re not juggling visits with family around visits to the hospital. We’re not choosing presents that are only appropriate for use in a hospital bed. We’re not frantically canceling family vacations. We’re not dazed and exhausted and wondering how on earth we’ll manage to play this damn cancer game any longer.

We are not sad and afraid and worried. We are not sick.

We are, instead, this:

Merry and bright

Happy Everything from all of us to each of you.

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April 2017
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