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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.

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