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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.

 

 

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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 feel like I’ve spent the better part of 2011 complaining about the weather. First, it was the endless snow, waking up every Friday morning to an additional twelve inches of white stuff covering our world. Then it was the endless rain, day upon day of spring spent running from one destination to another, head down and umbrella up, puddles of mud blocking your way. And now, inevitably, it’s July in Cleveland, with its requisite 90 degrees and humidity so thick you start sweating the second you get out of the shower.

I’ve wondered if maybe I’m just getting old, like now I’m grumpy and can’t tolerate what we once thought normal.  But then I listen to the local meteorologists and am strangely comforted by the fact that we do indeed keep breaking new records. We all know this past winter was an extreme case, as evidenced by the five snow days.  I think I had five snow days in my entire young life. They were so rare I can remember them still: One in second or third grade spent in the yard of our Swiss neighbors, the Zuberbeulers (could that really have been their name?) building snow forts and having epic snowball fights. Another (which might have been a cold day, not an actual snow day) in eleventh grade the day before winter vacation that surely wrecked havoc on the teachers’ gradebooks since many papers were due and many tests were scheduled that could hardly be repeated two weeks later. And this year … five. The state legislature actually changed the law in January to increase the allotted days from three to five. So you don’t need me to tell you that this winter was unusually awful.

And then on the first day of May, all the news contained the delightful little fact that we had accumulated more inches of rain in April than in any previous month on record. And then yesterday was the hottest day in sixteen years, since another 98-degree day in July of 1995 (which I spent in the even hotter city of Houston, Texas).

I’m relieved when I hear these reports because I feel vindicated, like at least it’s not me. At least the weather really is as bad as it feels. And I’m not the guy climbing up ladders to install windows or paint the exterior of houses, working six or seven days a week to make up for the lost jobs of springtime.  Nor am I the child (i.e. Braedan) off at camp with the distinct privilege of horseback riding for an hour each day, which  requires wearing jeans and a helmet. So I really shouldn’t complain. But I still do.

But now the storm has come through and cooled things down a good twenty degrees, so it’s out to sit on the front porch swings with my sweetie(s) to enjoy a cool summer evening.

Wow, we thought we had a snow storm last week?

To help you imagine long lazy summer days with the sound of squealing children wafting through the neighborhood air, here’s an article that was written about Austin and his treehouse for the December edition of the Heights Observer.

Too bad the treehouse is buried right now . . .

This was the day last year when . . . oh no, don’t worry, I’m not going to replay every miserable moment of last winter. If you want to walk through that heartache and misery all over again, you can scroll down to “Archives” on the left and click December 2009.  In the meantime, I have a somewhat lighter story to tell, still replete with drama and suspense.

Braedan had an appointment with the psychologist this afternoon and Austin was scheduled to have labs drawn. After about five hours of nonstop snowfall, I briefly considered canceling but figured, “Come on, it’s Cleveland, I’m used to snow.  We can surely make it the three miles down to the hospital.” I was largely motivated by the fact that Austin and I had baked zucchini muffins and pumpkin bread to bring to the families on the oncology floor, along with fresh fruit and coffee, for breakfast tomorrow. Plus I was finally going to clear all the donated toiletries out of my mudroom (even my mudroom gets cluttered) and deliver them to the Ronald McDonald Family Room.

So we bundled ourselves in snow gear and picked Braedan up from school fifteen minutes early (mostly so we wouldn’t get stuck in the mad rush of parents swooping in to rescue their children from the first major snowstorm of the year) and down we drove.  It was slow going, visibility was negligible but it wasn’t rush hour or anything (foreshadowing, foreshadowing) so we made it just fine.

Braedan had a great session, Austin’s hemoglobin has actually gone up a tiny bit instead of down, delaying the need for a blood transfusion yet again, renal numbers held steady and all was well.  We lugged suitcases and backpacks full of goodies clear to the other side of the hospital (Braedan: “This place is like an underground city, Mom.”). The nurses were thrilled, happy to see their healthy, thriving little ex-patient. We chatted and wandered around the halls hanging up signs announcing the breakfast, when someone asked us how we planned to get home. Well, drive, . . . how else?

Then the nurses pointed to the line of cars sitting dead still on the road, not having moved for nearly an hour despite ambulances coming through in both directions. Total and complete gridlock. The line out of the parking garage alone would have taken more than an hour. So I fed the boys some high-sodium junk in the cafeteria, unloaded as much gear as possible into my car, piled on extra layers of clothing . . . and off we walked.

Thankfully, my parents live about halfway between the hospital and our home, so it was less than two miles but solidly uphill and through a full ten inches of snow. But my boys dug deep and turned the whole thing into a wonderful wintry adventure.  Austin needed to be carried on and off (mostly on) but Braedan didn’t complain even once, except when I tried to enlist him in a rousing rendition of 99 Bottles of Beer on the Wall. Even Austin, safe in my aching arms, was smiling and catching snowflakes on his tongue.

We arrived after 45 minutes of hiking, tossed our pants and socks in the dryer while we warmed ourselves with hot chocolate (them) and wine (moi).  Mark had driven about five miles in two hours before finding a place to stop and eat while waiting for the traffic to thin.  We were all home and ready to plow the driveway before 8.

The little beans are sleeping soundly in their beds, the snow is still falling outside, the families at the hospital will fill their bellies with homemade treats tomorrow and I will return to find my car in the parking garage, where, as Braedan noted, “it’s used to sleeping.” Better than last year, that’s for sure!

I went for a run today, which wasn’t terribly productive. The sidewalks were nonexistant and the roads had several inches of hard-packed snow making me feel like I was running in place. Which is how cancer treatment in general feels sometimes. Like we put forth enormous effort and get all tired out, but don’t get much of anywhere.

That’s not true, of course. We should be “getting somewhere;” it’s just not a place we can see. And the marbles are indeed moving, one jar almost equal to the other (although I think it’s time for me to sneak some extras into the “Days Left” jar). But I do feel like we’re just bidding our time, waiting for it all to be over.

We all start to feel like that at this point in the year (especially this year, when the whole country is buried under snow) — wondering when spring will come, counting the days until the warm weather hits. It’s especially so when you’ve got a kid with cancer: Let’s just get through this, let the dark days end, let the sun shine again.

Funny thing, though, is that Austin isn’t bidding his time. He isn’t just waiting for it all to be over. He’s still living each day to the fullest. Today we tried to build a snowman (but it wasn’t good packing snow), he went sledding with Braedan and Daddy, and in between he jumped on the bed and the couch and down the stairs. No waiting for this kid, no running in place.

There is still joy, even with gray skies.

We’ve had two very regular, average, normal days in a row. Radiation has gone smoothly (audible sigh) and Austin has even put in two appearances at school. Yesterday, he was all excited about it at the hospital, naming his classmates for the curious doctor and eagerly guessing what they’d do for an art project. Then, true to form, about two blocks from school, he suddenly decided he didn’t want to go. But I put my cancer-mother fears aside and treated this like the almost normal day that it was: I brought him into his room, held him in my lap while they finished the story already in progress, and left shortly thereafter. I did linger in the hallway for a few extra minutes, chatting with the other teachers, trying to get over my own anxiety about leaving him there without me. But I peeked in the window and he was busily working on a puzzle, so off I went to my pilates class.

Today was even better, “more smiles” reported by his teacher. Two days in a row at school, missing only the first half hour due to radiation. Not many kids have that as their tardy excuse! He put on his new snowpants all by himself, climbed the mounds of white stuff to play on the playground, went to Movement class and the library, ate his snack and played with Play-Doh. Just like any other kid. Just like any other day.

Things have been so normal, in fact, that he refused to take a nap, even when I offered to lie down with him (these early mornings on top of his not-so-great nights are killing me). So normal that, after I slaved away all yesterday afternoon making soup from my new cancer-fighting cookbook, both boys ended up eating leftover spaghetti while Mark and I loaded up on powerful antioxidants.

So normal that this afternoon when they asked for the thousandth time if we could go sledding, I came up with my thousandth excuse; really convincing ones like that I hadn’t started dinner yet or needed to go through the pile of mail putting down roots on the dining room table. As the (so normal) whining reached a feverish pitch, I stopped saying no long enough to wonder what sort of memories I’d want them to have of their mother. Should they look back years from now and remember a woman who always managed to organize the mail? (Not likely, trust me.) Who did nothing but feed them, clothe them and drive them to the hospital?

So we bundled up, Braedan out the door in record speed (funny, he’s not nearly that fast in the morning before school . . .), Austin resembling a Michelin man in all his layers of gear. I dragged them in a sled over to the park, which conveniently closes at “Dusk.” Thus ensued a conversation about what “dusk” means, which I initially described as “sunset” until I realized how hard it is to pinpoint when the sun sets if the sun hasn’t come out all day (or week). We settled on that moment when the sky turned from light gray to dark gray and headed home. But before that, both boys and their mom zipped down the hill, squealing as the snow sprayed up into our faces, fear and accomplishment blending into one. It was a quite a rush: sledding on a hill all our own, tears streaming down our cheeks from both the cold wind and the spreading laughter. This is the mom they should have memories of; this is the childhood they deserve.

So normal.

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