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I really am the luckiest. Not only do I get to visit exotic (and warm!) locations around the world, but I get to do it with a group of girlfriends that is fun, funny, smart, interesting, brave, adventurous, supportive, nurturing, loving, hilarious and — least I forget — gorgeous.
The little beach bar next door to our house, perfect place for drinks at sunset
The view from right outside our bedroom window
Beach bar again
These pictures are really nothing compared to the much better ones I need to download off Shutterfly. The jungle adventure shots of us ziplining, rappelling and aero-cycling are must-sees.
Thank you, girls, for making our trip such a super fantastic fabulous wonderful restorative and all-around special experience. Mexico should expect us back again soon.
And thank you, Mark, for taking such good care of the boys in my absence and never once complaining.
Did someone say lucky?
Yesterday was indeed another day. And a good one at that.
Started with an early morning Dunkie’s run by Mark (nothing like junk food at 8am to get the kids up and at ‘em). Then off to school, with an end-of-Friday visit by Mommy and Braedan, complete with frosted zucchini muffins (not too junky, those) and a read-aloud by big brother to a class of cute and giggling kindergarteners. The whole event was tinged by a bittersweet encounter with a teacher’s aide I knew from my Coventry teaching days, who stopped me in the hallway with a hug and whispered in my ear how fervently she had prayed for this day.
His teacher using a magnifying glass to search for gray hairs.
More Lego gifts in the afternoon (god, I love how those keep them quietly engaged for such long stretches). Then homemade pizzas with the Gallagher clan, more presents and the as-requested key lime pie.
Today, a couple of hours of soccer accompanied by Daddy (so Mommy can finish last-minute party prep and cake decorating), followed by hopefully sunny skies and a gaggle of excited school children eager for Lego mania.
And as I said yesterday on Facebook, not a single day goes by when I am not keenly aware of how lucky I am to have this boy in my life. It’s been a crazy, unexpected, awful, wonderful, unlucky and extremely lucky six years.
Happy 6th Birthday to my sweet love, the one and only Austin Gallagher.
I hope everyone had a lovely Thanksgiving weekend with their friends and family. I remember when this weekend was nothing but one long trip to the bar, night after night of catching up with old friends . . . not so much these days. Ours was rather boring, actually, since Braedan was sick and we were mostly housebound (except for our two-in-a-row Thanksgiving dinners– the Gallaghers’ in the afternoon followed by the Dietrichs’ in the evening, giving new meaning to the term “overeating”).
As always, we are struck by how very lucky we are and how very far we’ve come in the course of the past year. It has been another remarkable journey, made all the more remarkable by its happy ending. On Friday night as we lazed about the living room, Austin decided to switch up his pajama top and bottoms because he wanted to “be a superhewo.” Of course, this is one child who need not don a costume to achieve superhero status, but it did make for cute pictures:
Braedan brought home his school pictures yesterday: images of a widely grinning boy, standing happily amidst friends and peers who adore and admire him. He has been doing fantastically. I think his struggles in August and September may have just been about adjusting to the start of school, due in part to the strong loyalty he felt for his kindergarten teacher. I now realize he simply wasn’t ready to transfer his allegiance from one teacher to another (not to mention not being ready to end summer and get back into the swing of early mornings and daily homework!).
But things have really settled down and he seems much much happier. He’s still seeing the psychologist at UH every other week and she also thinks he’s doing fine. He’s gotten into “projects” lately — building jumps for his remote control cars out of bricks and planks of wood or cutting paper into strips and weaving together a “rug” for Mark’s birthday present because we don’t have one in our room. And reading! Wow, is he reading. He’s finally jumped that hurdle to the point of fluidity and can get fully immersed in a book without the hesitation required to sound out each individual syllable. The other night I walked into the room where Mark and Austin were snoring on the bed and Breadan was sitting up next to them thoroughly engrossed in a book, whispers of words escaping his constantly moving lips. So I brought my current favorite in with me and plopped down in the rocking chair to read alongside him; the first time we’ve actually read independently side by side . . . but not the last.
So, again, I feel mighty lucky. Two boys who are mostly happy, surprisingly healthy, remarkably normal. What more could I ask for?
Austin’s appointment this afternoon with the orthopaedic surgeon went well. We soaked his hand in sterile water and peroxide until we could peel the bandages off and the doctor was quite pleased with how it looked. He could tell right away from the way Austin was holding his fingers that there was no nerve damage (phew) and said the skin tone looked good and pink which meant it was already reconnecting (phew again). Austin, yet again, has ended up extremely lucky in his own extremely unlucky way.
Stitches can be removed in a week, although the doctor did caution that the nylon kind used in the ER will be painful to remove. Not awful, but at least a pinch which will certainly get tiresome when there are 42 of them. He even said he was going to call the ER to tell them not to use that type with kids anymore.
By the way, you’ve gotta click directly on the photo below to see up close the full extent of damage.
Thanks for all your comments, both here and on Facebook, which fully convey the horror and commiseration that such a story deserves. I heard from at least three separate people who said they read it out loud to a group to much gasping and groaning. We too felt horrified as we watched this all unfold and were weighed down by a deep sense of the injustice of it. Especially because it had happened on Austin’s requested outing, his special celebration, the thing he’d been awaiting for so long.
But at the same time, Mark and I were both slightly relieved (only slightly) that it was Austin forced to endure this and not Braedan. Braedan is marvelous in many ways, but tolerance for pain is not one of them. He has, however, encouraged all of us to eat (and color) with our left hands until Austin regains use of his right (coloring is easier than eating). Another grand and mature display of brotherly affection between the endless bickering.
And I agree that at least this falls within the range of “normal” little boy accidents but I also agree that we should be exempt from such things. In fact, I hereby apply for our official exemption and can write a powerful and convincing essay to the universe describing exactly why my family should no longer be subjected to such “ordinary” calamities as broken arms and bicycle accidents, and most especially not such major calamities as teenage car wrecks or middle-aged heart attacks.
Now I know (oh, do I ever) that suffering is not evenly distributed but I do indeed think we’ve had enough.
I know it sounds cliched and a little bit trite to hear people go on and on about how cancer makes you appreciate every moment, how you learn to live life to the fullest and feel thankful for each small thing. But it’s really true.
Everything we do seems to be tinged with a heightened sense of importance, which often leads to a heightened sense of fun. We have filled our past three days of official “summer” with lots and lots of swimming and friends and backyard fires and bike rides and fireworks and even a baseball game.
Friday night we went to Austin’s first Indians game and Braedan’s second (both in a loge — I don’t know what that boy’s gonna think when he goes to a “real” game!). They thoroughly enojoyed themselves, mostly climbing around on the seats and coloring pictures of Slider the mascot. The night ended with a massive fireworks display, worthy of any town’s official Fourth of July show.
As I sat under the dark summer sky with Austin in my lap and Braedan behind me screeching with delight at the fireworks exploding in front of us, I couldn’t help but think how very very lucky I am for now. Six months ago, we didn’t know if we’d get to now. I am so so thankful for now.
Oh, you know I’m gonna keep on writing . . . just because the PICC line is out doesn’t mean we’re that done! Not like the first time when Austin’s Broviac was removed and I wrote that fantastic (in my humble opinion) ending on the Carepage, which became the last page of the book, and then stopped updating until his next CT three months later.
Here it is, just in case you weren’t around back then: the original ending, written on Wednesday, March 19, 2008:
“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 hot dogs 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. But it was a warm fall and we tried to make up for what we had 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, growing, 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 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 rendering him gleefully oblivious to the masked strangers who wheeled him 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: their reason for being here was written all over their faces. So 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.”
I loved that ending. I imagined readers coming to that final phrase of my 254-page memoir feeling good, relieved, satisfied that after all that drama, all was well in our lives. And then they could put the book down and walk away. Just like I thought we had.
Except we hadn’t. That quick little Broviac-removal wasn’t our last visit to “Peed Surge” and our chariot didn’t carry us nearly as far away as we’d hoped. It was a full year, almost to the day, before I had to write this one and even that was only the beginning of what will have to be a seriously revised book (or two?).
But even though the ending didn’t last, that final thought holds true. And no matter what befalls us, we remember it every single day.
Well. Wow. What a day.
I’m not usually at a loss for words (and I’ll surely manage to find a few now), but that was just a really great day.
Started off with me and Austin eagerly waiting through 50 painful minutes of the morning fluff on Fox 8 (my deep apologies to anyone else who also suffered through that — if you taped it, just save yourself and skip to the last ten minutes of the program, please!). But finally, there they were. First Mark and Dr. Letterio, sitting side by side with their half-shaved heads, talking about the importance of pediatric cancer research. And then, right when I thought the segment would end without Braedan getting his chance in the spotlight, they scanned back to the anchor table and there he was, sitting adorably on the anchor woman’s lap. And she looked just about ready to eat him up. With good reason too! He was breathtakingly cute on that screen, all big eyes and pretty face. I’m trying to find a link to it on their website but haven’t had any luck so far.
Then, by mid-afternoon, Mark and I and his dad were (wisely) in a taxi on our way downtown. A.J. Rocco’s was quite a scene — bottleneck at the door, people pushing their way through, sloshing the cups of beers raised high above their heads. It was reminiscent of my college years thankfully minus the bar smoke. It was part party — hanging out with friends and drinking beer, and part hospital visit, surrounded as we were by our doctors and nurses strangely dressed in street clothes, not a white coat in sight.
The whole thing had an emotional tinge to it: random people hugging and crying, bits of heartfelt conversation wafting up through the ordinary bar noise. I was honored to meet some of the members of Team Austin we didn’t know, shavees who had simply picked my child from among the others on the St. Baldrick’s site, in part because of his cute smile and in part because they wanted to find someone currently “in the fight” (is he ever). People who had never met us, for whom we were no more than a figment of the internet, but who nonetheless raised thousands of dollars in our name. And as I was gushing about my appreciation for all they did, they were likewise thanking me, telling me how proud they were to be part of this, how special they felt to be able to do this on behalf of Austin.
And then there was Cori. This woman had hair down to her waist, literally, to her waist. We don’t even know each other all that well, but she just signed right up, like “Why not?” On her St. Baldrick’s page, she mentioned how when you see a child fall down at the playground, you just go and help, no hesitation. Well, this was the same thing for her: We walk to Fairfax together and wait on that playground, rain or shine or snow (mostly snow) for our boys to come dashing out the door, our little ones antsy in their strollers. We’re “playground friends” as she says. So when Austin “fell down,” she helped.
And help she did. She hadn’t raised a huge amount online, a decent amount but nothing worth the length of that hair. So when her turn came yesterday and her name was announced, the MC asked for extra donations. A few of us walked around the bar with leprechaun hats outstretched for people’s cash. Now remember, most of the people there had already given in one way or another, either money or hair. But most hands managed to fish out their wallets and give some more, because she came up with a whooping five hundred dollars on the spot.
And everybody watched with bated breath as the barber sniped off huge chunks of ponytail to donate to Wigs for Kids. And everybody teared up as the buzzer started working its way across that suddenly short hair. And everybody cheered when she stood up on the chair afterward to show how beautiful she looked.
The MC was standing next to me as I was cheering loudly and turned to ask if she was a friend. “She’s shaving for my son,” was my answer at that moment. But my answer right now is, “Yes. She is my friend.”
And that’s not all. Less than an hour later, one of Mark’s colleagues, the other woman on our team, walked in. And her hair was only an inch or two shorter than Cori’s! So the hats were passed around again and I was thinking, “These people just gave, there’s no way they’ll give again.” But give again they did, handing over another $377. It made me feel a tiny bit guilty, these women with lush long locks willingly sitting on that stage, while I won’t do it and I’ve never even liked my hair! But I’ve suffered enough on behalf of pediatric cancer. I make my sacrifice every day. I’m keeping this hair.
Most of all I felt moved, touched, lucky. I don’t use the word “blessed” very often because it’s too religious for me, but I felt enormously fortunate. Fortunate that my life is so rich with generosity and kindness and friendship and love. That my husband and my children and I are surrounded by such an open and giving community. Yesterday made the heavy burden we bear feel, if not lighter, at least more tolerable. It made what should be an experience seeped only in negativity feel positive.
It made me feel full and whole and lucky. And so I thank you.
There is definitely something to be said for Facebook and birthdays. Thank you all for the many many well wishes today. I’ve had a lovely day, actually a lovely weekend including dinner out with my husband on Friday and again with my family yesterday. Today started with homemade waffles and bacon, much to the delight of my little people.
Then an 80-minute run through the snowy sidestreets with my girl Christie. I felt great throughout but waaaaaay older than my 37 years as soon as I was finished. Then — and perhaps you’ll find this pathetic but try not to judge — my special alone time was a trip to Target. It was special. Really. Braedan tried to weasel his way into it (unsuccessfully) by saying he had let me go to the grocery store alone the day before. Not as special.
The lowlight of the day came when I unpacked the lamp my parents gave me and the boys decided to “make snow” with the styrofoam packaging (after being told not to), giving way to an hour-long clean-up. Like we really don’t have enough snow for them?
We rebounded with homemade pizza and a rousing pillow fight. Then I snuggled in between my two boys and read another favorite, Miss Rumphius. If you have kids and don’t know Miss Rumphius by Barbara Cooney, you really must find it.
And the best part: no hospital stays, no ER visits, no medical emergencies. Just me and my three favorite guys under the roof of our wonderful new house. So, I’m another year older . . . with a few thousand more wrinkles and gray hairs (and stiff muscles)? Oh well, I’m still lucky.