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There were many years when Mark and I planned our springs and summers around weddings. Weddings of his friends, my friends, family members. Weddings in Cleveland and Chautauqua, Chicago, Florida, New Orleans and Boston. And then suddenly, right when we were complaining about too many weddings, they stopped. We got old, I guess, and as many friends were getting divorced as getting married.
We went to a wedding this past Saturday, our first since my brother Eric’s when I was (very) pregnant with Austin — a balloon of a bridesmaid, if ever there was one.
So I was very pleased when we were invited to my friend Ann’s wedding in Chautauqua. This is the Ann who was my long ago summer friend who reappeared in our lives on our second day on the pediatric oncology ward as Austin’s nurse practitioner. We quickly caught up on the years that had separated us, and she became a solid and irreplaceable fixture in our cancer story.
She had warned me ahead of time that Ariana’s parents would also be at the wedding. “Sweet Ariana” who we knew in the first few months of Austin’s treatment and who has been gone from this world for almost four years now. I hadn’t seen her parents since Ariana was still a patient on the floor but think of her and her mother nearly everyday, so was very excited to see her. I knew this was bound to be an emotional night but thought I would be okay. And then I first glanced her across the room, looking ever more glamorous than the sweat-panted version I used to know, and immediately got choked up. We waved to each other across the room but couldn’t get close enough to say hello as the ceremony was about to begin.
And then a beaming Ann walked down the aisle to her eagerly waiting groom, and the ceremony began. And oh, begin it did. They had the traditional we-wish-to-remember-these-people-who-are-no-longer-with-us-today: Grandma Mildred and Grandfather Harry, Great Aunt Beatrice and this ancient person and that ancient person and then — you’d think I would’ve known it was coming — and then, “and sweet Ariana.”
Oh my god, I almost had to walk out of there. I didn’t dare look up at Anna Marie — that would have been the end of me. I cried behind my hand until Mark pulled a tissue out of his pocket (“I thought you might need this, honey”).
The evening wasn’t all tears. There was laughter and hugs and lots and lots of dancing. It was so special to get to catch up with Ariana’s parents and hear about their older son and their new younger son. Although I cannot truly fathom what they go through each day, I do have an inkling. I see myself and Mark in each of their (sometimes opposite) ways of moving forward. I was able to freely ask the questions like, “What do you say when people ask you how many children you have?” (she says three, he says two) and “What did you do with her bedroom?” (kept it the same for a good long while, but often had to shut the door, and finally made it the new baby’s room).
I know Anna Marie wants joy in her life — and has joy in her life — for her own sake, for her husband, for both her children and for the memory of her oh-so-special daughter. But I know she has pain in her life too, every single day.
All in all, it was a lovely evening, for so many reasons, not the least of which was Ann’s palpable happiness. I spent several hours on the dance floor in my too-high heels. In the recent berth of weddings, I haven’t had many opportunities for dancing, but it does feel good (except for, you know, my feet). I even managed to get Mark out there for one slow song. As we swayed to usual wedding band fare (“I Can’t Help Falling In Love With You”), I thought back to my brother’s wedding in 2006 and marveled aloud, “Is this the first time we’ve danced with each other in almost five years?!”
“No honey,” he said with certainty. “No, it’s not.”
Oh right. It’s been almost four years but there was that night, our fifth wedding anniversary and our fourth night of more than one hundred sleeping on the pediatric oncology floor of the hospital. We had take-out pizza and wine in plastic cups, which we hid behind our backs like kids at a high school party every time a nurse walked in the room. We watched our wedding video and we danced to Ben Folds’ “The Luckiest,” two images of one couple: The first in miniature on the television screen, a fairy tale bride and groom dancing under the stars with the moon reflecting on Lake Chautauqua behind us. The second, in stark contrast, leaning against each other in a hospital room, silhouetted against the green glow of an IV pump, sick baby asleep in the cage-like crib beside us.
Sure didn’t seem like a fairy tale in that moment. But I’m still holding out for that happily ever after.
Alright, let’s see if I’m ready.
Cape, tights, superpowers? Check. (Thank you, Chris, for reminding me to pack those.)
Well-worded oral pitch that clocks in at 87 seconds (thanks to some careful revisions) and that makes me giddy with pride? Check.
Well-researched list of agents, ranked according to best match for my work? Check.
Carefully chosen outfits that are both comfortable enough to wear all day and yet appropriately stylish? (Hey, you gotta look good.) Check.
Three-plus years of hard work, hopes and dreams? Che….
Wait a minute. The product of my three-plus years of hard work, hopes and dreams (and blood, sweat and tears) is staying behind. It’s here, this family, this house, this home. Two mostly healthy, mostly happy, remarkably normal children and one super-strong marriage.
And so another year goes by.
On this date, August 3, 2002, Mark and I got married underneath perfectly blue skies on Lake Chautauqua. I remember that I had worried for months about the weather since the ceremony was completely out in the open and, while we had a tent for the dinner, the event could have been pretty miserable if the weather hadn’t cooperated (people would have had to walk through mud and rain just to get to a bathroom!). I was willing to accept anything short of a dark stormy day– 95 and humid or 60 and cloudy would have been preferrable to that. But not only did it not rain, it was positively glorious. I mean, as perfect as they come. Sort of like today, but not even this hot: blue sunny skies, warm in the sun but with a steady breeze, an orange sun blazing into the lake at sunset, followed by a purple and pink sky before we danced to “The Luckiest” under the stars. Really perfect.
And not just the weather, but the whole she-bang. I was big into planning my wedding. I had a blast with it, dreaming up all the tiny details and excitedly poring over Martha Stewart’s magazines. And it actually went off without a hitch.
And of course, as everyone knows, it’s not the wedding that is most important but the marriage that follows it. And that too has been as close to perfect as they come. Not that it’s gone according to plan — no, not quite that — but I could not have asked for a better husband, a more steadfast partner, a more trusted friend, than my Mark. As we were cleaning furiously this past weekend (more on that in next post), I put away a card that I gave him right before we headed back into the hospital for Austin’s last surgery and inside I’d written, “I could not imagine going through something more horrible and I could not imagine going through it with someone more wonderful.”
So tonight, we will toast once again . . . so far, so good.
In September 2003, Mark and I went to Boothbay Harbor, Maine for the wedding of his best Peace Corps buddy. I happened to be both six months pregnant with Braedan and one week shy of losing my beloved grandmother, so I was, to say the least, a little emotional. We were tooling around the town one day, looking in the little shops, when I stumbled upon Story People. Story People are these drawings of crazy, fantastical people with short “stories” written into the artwork. (In my opinion, the stories themselves are the artwork.) They’re poignant and funny, heart-breaking and beautiful, and they made me cry, right then and there in the store. Mark shrugged sheepishly and offered up my pregnancy as an excuse, but the guy behind the counter assured us that at least one customer each day cries when reading the Story People.
I bought this one and this one for Braedan’s nursery, and they now hang on Austin’s walls. They’re my favorite gifts for when people have babies or find the one they’ve been waiting for (I bought this one for Mark, who happened the be just the one I was waiting for). And then, following the death of one of our favorite fellow patients, I sent this one to her mother. I felt guilty about it afterwards because it was so heart-breakingly sad, but I figured there was no way for her to be any sadder than she already was and at least there was some small beauty in this. And sometimes some small beauty is all you have.
Today, I have another Story People print ready to hang on our wall. I actually bought it a year ago as part of a buy-three, get-the-fourth-free deal and was saving it to use as a possible gift. But I’ve realized that it fits no home more perfectly than our own. People the world over and throughout history have spent time, money and energy seeking out the extraordinary. Extraordinary adventures and accomplishments, extraordinary wealth and fame . . . but I have learned (the hard way) that it is the ordinary moments that make life beautiful. Today we walked to the grocery store, colored Easter eggs, blew bubbles in the backyard. Tonight we’ll make homemade pizza with the boys spreading the sauce and fighting over shreds of cheese, we’ll read books together and snuggle up before bed. We’ll kiss our children goodnight and head downstairs for a glass of wine and a brief hour of quiet. We will be ordinary people doing unremarkable things. And it will feel remarkably extraordinary.
This is the song that was used as the backdrop to Austin’s Miracle Story for the Rainbow Radiothon last fall. Sit back and listen to both, especially that line that says “Isn’t it exceptional how everything works out after all,” then wipe your tears and go hug someone you love. It is indeed exceptional.
I am the luckiest.
I have a family who stands beside me, backs me up and cheers me on. I have a rock solid relationship with my rock solid husband Mark. I have friends who encircle and enrich me. I have a strong and healthy and able body, despite having had type 1 diabetes for twenty-three years. I have enough money for everything I need and most of what I want. And I have two little boys, Braedan and Austin, who fill me with delight and wonder every single day.
But Austin is not the luckiest. Diagnosed with bilateral Wilms’ tumor, cancer in both kidneys, in July 2007 when he was just ten months old, Austin has been forced to endure more horrors in his short life than most of us ever will. But he is a survivor. After eight months of treatment, he has been in remission since March 2008.
The months, and now years, following his diagnosis have taught us a lot . . . about fear, hope and strength, about each other, ourselves and our boys, about life, luck and love.
And I’m ready to share.