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We are at that time of year, as we are so often are, that is filled with milestones and anniversaries. Some of them are good, some bad, all tinged with reminders both subtle and glaring of where we’ve been and where we might someday end up. Last Wednesday was Austin’s kindergarten musical performance, not an obvious cancer milestone in anyone’s life, but filled with significance nonetheless. It should go without saying that there is just something about watching five and six-year-olds go through a song and dance routine, all waving their arms slightly off rhythm, scrunching up their faces and waving to their parents one minute, the perfect image of mature composure the next. All coupled with their eager filing from risers to stage to recite their carefully rehearsed but poorly enunciated lines, and the whole thing is just adorable to the point of tears.
But for us, it also stood in stark contrast to Braedan’s kindergarten musical three short — and very very long — years ago. That day, way more dramatic than this, is described here. And let me tell you, it was not as easy as I made it sound in that rather upbeat review. It was instead filled with a lot of anxious clock-watching, as I wondered if I would yet again break the heart of my elder child in my desperate attempt to keep my younger child alive. So it was with enormous relief that we watched Austin sing his songs and wave his hands and recite his line (inappropriate though it was for a child who can’t pronounce his Rs): “And you would be right, with most of those terms . . . You see, ladies and gentlemen, we are the worms!” with no pending hospital visits, no Sophie’s Choice decision looming in our near future, no fear of what the next day, week, month might hold. Instead, it was all sweetness and pride, worms and snakes, and even Braedan and two other older siblings were invited to provide comic relief in the form of cheesy bat jokes.
Austin on my lap three years ago
Austin last week, ready to perform
Austin on stage, reciting his line
Braedan on stage (far right), reciting his line
And if anyone is really paying attention, you’ll notice that Austin was wearing the same shirt last week that Braedan wore to his kindergarten show. We, of course, went to the Colony for dinner that night but I have no pictures of grilled cheese-induced ecstasy.
But, if you want a real milestone, a truly significant, did-it-again milestone, here it is, hidden in the midst of this post about a school concert . . . Austin had an abdominal ultrasound today. We opted to do it back at Rainbow, even though his new oncologist is at the Clinic, because only this particular radiologist knows what to expect from his crazy misshapen kidney. So we’ll have an additional appointment in a few weeks, with a chest x-ray and labs and a physical, but for now, from today’s scan which looks at his kidney and liver and is the thing that really matters most to us, Austin is three years cancer-free. Yes, that’s right. That’s what I snuck in here at the end of this silly little post. AUSTIN IS THREE YEARS CANCER-FREE. Ka-pow.
Sometimes I don’t realize just how sheltered my children are.
My mom and I took the boys to Washington DC for a few days over their Spring Break. It was a great trip to a truly beautiful city, one the boys tackled with gusto on their Razor scooters as they weaved in and out of traffic on sidewalks and streets and covered a full seven miles on one day and six the next, my mom and I speed walking behind them. They loved the carousel and the Spy Museum, were massively disappointed that the paddle boats on the tidal basin were closed due to wind, and had mixed reactions to the war memorials. Braedan was old enough to be awed by the awe-inspiring list of names on the Vietnam Memorial Wall, asking over and over again, “All these names, mom? All these people died??” Austin, only six, tugged on my hand and whined, “Can I ride my scooter now? Can I ride my scooter now?” as we tried to quietly pass those visitors running their fingers over the names of their loved ones.
But the single thing that defined our trip above all else was Braedan’s reaction to the homeless people. He noticed them our very first evening, as we walked back towards our hotel after a nighttime viewing of the White House. There were three, huddled under blankets in the entryway of an office building, and he was stunned. I hadn’t realized before how infrequently we walk the streets of our own downtown and see anyone begging (not that they don’t exist in Cleveland, it’s just that my kids aren’t there to see them). He stopped immediately to question us and then eyed the bag I was carrying with the desserts my mom and I had been carefully saving til later. “Do you want to give one of these?” I asked, somewhat begrudgingly. But I forgot my sweet tooth as I watched Braedan rush back with a plastic fork and a slice of cheesecake to wish a homeless man a Happy Easter. “I get lots of treats for Easter,” he announced to us with a proud bounce in his step. “I told him this was his Easter treat.”
He was not so easily satisfied in his quest to make a difference though and began carefully planning what he would order in restaurants to ensure he had leftovers appropriate to give away. He would usually scope out the scene outside the restaurant prior to entering to determine exactly who he would return to with his take-away box (somehow, “doggy bag” just doesn’t feel right in this context). This became the main topic of our conversations as well, as Braedan asked careful and impressively mature questions on the subject at every meal, including “Are homeless people educated?” and “Where are their families?” My mom and I spent a lot of time talking about the many complex reasons people become homeless, the services available to them (especially for those with children), as well as the many issues to be addressed when trying to “solve” the problem. We covered everything from affordable health care to jobs with a living wage to access to high quality education, plus mental illness, drug or alcohol addiction, and poor personal choices.
Looking to the future, he announced that after he makes millions of dollars for the app he’s planning to design (what this million-dollar app is going to do, he has yet to explain), he will give all that money away to homeless people. I tried to bring him back to the present by suggesting he use his role as a student council member to organize a school food drive, which he eagerly jumped on . . . until I told him there are homeless people and food kitchens in Cleveland too. “No!” he said with certainty. “I want us to collect canned food and send it to Washington DC!” Humph, I guess we need to head to downtown Cleveland and stroll the streets one of these nights. Under some bridges might help too.
One evening, after he gave his leftovers to a woman smoking a cigarette, which I commented was one possible reason people may choose not to donate to her, he said, “Yeah, but mom, even people who make bad decisions deserve food.” As for my job as a bleeding heart liberal mother, I have two words: mission accomplished.
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:
Once back at school, Braedan was the youngest kid in the district to join Ski Club. He enjoyed it immensely despite record little snowfall:
At the end of February, Mark and I went to Charleston, South Carolina with friends. A wonderful weekend in a beautiful and charming city:
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:
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:
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.
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:
And of course, our tenth wedding anniversary and our super celebration-of-everything party:
Fall meant back to school for Braedan and off to school for Austin:
More travel, this time for Mommy and Daddy on their own:
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:
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.
It never ceases to amaze me how quickly we can revert back to our old roles. Our seamlessly we become who we once were: the patient and the advocate, the comforter and the distractor. It’s as if we never left that old hospital world; it all feels so familiar, so deep in our bones, even in a brand new space.
We awoke super early Friday morning, if you can call 3:45 “morning.” Driving down the driveway at 4:30am to arrive in pre-op by 5:30 made me ever thankful that we lived so close to our hospital for all those years. (We ended up at Akron solely for insurance reasons — which will change in the new year — and, aside from follow-ups won’t be driving back there again.)
By 7:30, Austin was walking down the hallway hand-in-hand with an operating room nurse, with just one backward glance, but no tears, as he marched off to surgery. A quick hour-and-a-half later, he came to in the post-op room and we were by his side, offering popsicles and comfort. The ENT said his tonsils were enormous, but came out with no problems. And the hand surgeon was very pleased with how his finger repair went, no nerve damage despite many layers of scar tissue. He has a heavy red cast up to his elbow, only there to keep him from using his hand. The doctor wasn’t even sure he was going to give him a cast until he asked me how active Austin is. Once the words “gymnastics” and “cartwheels” passed through my lips, he knew just what to do. (And I’ve seen Austin do three cartwheels already, using the cast as a study foundation.)
We spent the afternoon mindlessly rotating between the floor playroom and his bed, trying to make the minutes pass by a little more quickly. A couple of books, wandering aimlessly through the halls, cajoling with sherbert and applesauce. Three good hours followed by the miserable half-hour leading up to the next dose of painkillers, followed by the miserable half-hour it takes to kick in. Hospitals are just plain boring, there’s no way around that. Akron was a lovely place; we went downstairs for a dramatic reading of How The Grinch Stole Christmas, and met Ronald McDonald on one of our walks. That evening as we sat on the bed eating dinner, a troupe of carolers in Renaissance costumes came singing down the halls. And a volunteer knocked on the door to read Austin a bedtime story.
So, it was fine, but still, it’s a hospital and I can’t help but feel trapped when I’m there. And they’re all amazingly the same, the colors of the cupboards to store your clothes and the placement of the buttons on the walls, the smell of the rubber couch I slept on and the feel of the sheets that have been washed ten thousand times. Austin did okay throughout the night, well, as expected, I guess. He was up at midnight and 4am needing medicine. But he ate surprisingly well Friday evening, chowing down an enormous l tray of soft foods for dinner. We were released by 10am on Saturday and safe at home an hour later.
He played hard and happily that day and I thought I’d for sure send him to school Tuesday, if not Monday. But yesterday was worse and today he took a three-hour nap in the morning, so we’re laying low. His hand is fine and he’s driven to be independent, managing to snap his jeans and write his name with both his left hand and his casted one. But his throat is very painful and he’s struggling to eat anything at all. Even popsicles hurt going down.
But we truly believe this could be our last overnight in the hospital for many, many years. We called it an Austin tune-up, just getting everything into tip-top shape for years and years ahead of normal, regular childhood. I imagine that the next time he sleeps in a hospital bed, he won’t scoot over halfway through the night and beg for me to slip in beside him. It’s sort of bittersweet, that thought, but as hard as watching my baby grow up may be, I will always take it over the alternative. Always.
About this time last year, I wrote a couple of posts about helicopter versus free-range parenting, found here , here and here. There must be something about the start of the school year and the intense focus on rules and safety that brings these issues to the forefront each fall, because I’m at it again. And now, a new term has entered our lexicon, and it’s not a good one: bulldozer parents. No, they’re not knocking you over with stories and Facebook posts about how fabulous their kids are nor are they overtaking everything in their paths with their zealous parenting strategies. They’re called bulldozers because they attempt to clear the paths in front of their children, removing any obstacles, dangers or hardships before allowing their little ones to travel on ahead.
We are doing no one any favors here, people. Kids — shocker here — are actually pretty smart: they can figure stuff out. They can deal with hardship. They can be independent. And they must be forced to, in situations that are relatively safe and relatively risk-free, early in their lives or they’ll never ever be able to do it later when it really matters. If we clear every bump and tree root from our kids’ paths when they’re eight, how on earth are they going to deal with bumps and tree roots and, god forbid, bears, when they’re twenty?
I was talking about this with a friend who works at a local university and she said she’s witnessed college students going in to their professors’ office hours to discuss a paper or grade accompanied by their mothers. Let me repeat that: she has seen college students, legal adults, old enough to fight in wars and vote in elections, who bring mommy along when they need to discuss something difficult with a professor! Hello? How is this person going to have a real job, with angry customers or clients? Or raise their own kids? Or do any of the tough things that are a part of grown-up life?
This post is driven in part by a recent reiteration of a long-standing district rule that states that only 4th and 5th graders can ride their bikes to school. I am working with a certain pro-bike city council person to get the district to change this rule and one of their stated concerns is that people backing out of their driveways in the morning won’t see small kids on their bicycles. Well, I don’t want my kids to get run over on their way to school, but guess what? I told them to look for moving cars in driveways as they ride. Just like we tell them to look for cars before they cross the street. And guess what? They do it!
I want my kids to be happy. And I want them to be successful. And, of course, I want them to be safe. But I also want them to be resilient and independent and to know what to do in difficult situations. And in order to gain those skills, they should have opportunities when they’re young to test themselves in relatively safe situations. If they’re walking to school by themselves and someone gets hurt, they should be able to figure out how to handle it: Is it minor enough that they can just keep walking and deal with it when they arrive at school? Should someone turn around and run back home? Is there a friendly neighbor whose house they can stop at? Figure it out, kids, use your heads and solve the problem.
If there is something they don’t like at school, a rule they believe is unfair . . . figure it out. Write a letter to your principal (our new one welcomes such student input), bring it up with a teacher you trust, organize your friends. Don’t just stand around and whine, . . . do something. If they can do these things now, in elementary or middle school, think of how much more capable they’ll be by the time they have to walk in to office hours (or battle) ten years from now. We may think we are helping them by clearing their paths, but we’re really stunting them and allowing them to enter adulthood completely unprepared.
And none of us want that.
This child’s road to kindergarten has been littered with eight-hour surgeries and the side effects of chemotherapy. More CT scans in two years than the recommended allowance for an entire childhood. Central lines and blood pressure medications fit for a retiree.
But despite the bumps in the road, the twists and turns and inevitable hills, the outrageous and unexpected detours, this child has reached his destination. The child has, against all odds, started kindergarten:
And it was surprisingly smooth. I’ve gotta admit that for the past few years, this day has loomed large in front of me. If I were a stage actor and needed to make myself cry, all I would have to do is imagine walking out of that building on the first day of school and the tears would start rolling. Honestly, I’ve cried about it many times already as I lie in bed at night just thinking about it. But today was different. We walked, the four of us together, the boys’ backpacks bulging with tissue boxes and Chlorox wipes. Then there was the chaos at school of students and parents trying to find their new teachers before the flag raising. I had one quick moment when a friend asked how I was and I got choked up, before anything significant had even happened. But I hid behind my sunglasses, not wanting to make Austin any more nervous than he was already was.
Into the building we went, down the hallway hand in hand. I left him in his classroom to join the parents for paperwork and Q&A. And that was another moment; I had to go into an empty classroom first and gather myself, right on the verge of a full-blown sob fest. But that too passed, as I was swept up in the mundane tasks of listing emergency contacts and ordering gym shirts. Then another goodbye, this one harder for him than me (but no tears). And that was it. I walked out chatting with parents and friends and headed down the street to my quiet house.
I did it. We did it. He did it. Austin is alive and well, as healthy and normal-looking as any child in that building. He is something we were never sure he’d be: a kindergartener. And next year, he’ll be a first grader. And then second and third. Before I know it, he’ll be a middle schooler. And he’ll graduate from high school and he’ll go on to college.
Because he is alive. And he is well.
He did it.
There were many times over the past five years when I was struck by the incredibly kind — and often completely random — outpouring of support we received from our community. Moms I’d never been introduced to would offer me tearful hugs in the hallways of the preschool. People I hadn’t seen in years would drop meals off at our house. Old friends my kids had never met would offer to babysit or take Braedan on an outing when we were in the hospital and I’d have to politely turn them down because no way was I shipping that boy off with anyone he didn’t know. People would tell me that they think of us every day and pray for us every night and cry for us, wish for us, hope for us. Sometimes, I couldn’t help but think, “Really? You do?”
But then tragedy strikes elsewhere and I totally get it. The shoe is on the other foot as I find myself thinking day and night about the woman who lost her husband completely unexpectedly a week ago. I’d known her a tiny bit when our oldest were babies and then I’d seen her at the grocery store every now and again. And then our kids were on the same baseball team this spring when, suddenly, she’s on my mind nonstop. A widow just my age. With three little kids. So I offer to pick up her boys and take them to baseball practice even though I barely knew their names a week ago. And I sign up to deliver a meal. And Mark asks me to run by her house to make sure her lawn doesn’t need mowing.
And then there’s another family we know, whose son is slowly dying after a brutal ten-year battle with cancer. And I find myself sharing their story and getting choked up as I repeat over and over again how damn hard they’ve fought. How endlessly long and endlessly hard they’ve fought for all these years . . . and now there’s an end. So I obsessively check their Facebook pages for the latest news, glance down their street as I drive past like it will tell me something. And I wonder — am I just being nosy? Is this rubbernecking at a car accident? But I feel such a strong need to know so I can … what? Drop off more food? Send a card?
I understand now. I understand how you all felt — both hopeless and hopeful, a little bit guilty for your curiosity, for taking such an intimate glimpse at another family’s suffering, and yet consumed by it. I know why you followed us, sometimes quietly, with such consistency, for so many years. I understand the cookies and the muffins and the casseroles and the coffee. I feel the drive to give that tearful hug. I get it. We all just want to do something. We want to somehow ease the paths of those in crisis. We wish that they could take that huge chunk of sadness they’re forced to bear and break it up into tiny, more manageable pieces. That they could pass off those pieces to their friends and neighbors and, yes, to mere acquaintances and probably even total strangers. We could all handle just one small piece of their sadness, that wouldn’t be too much. We could just quietly hold on to it for them, to lighten their burden, and maybe trade a little piece of our own strength or joy or peace.
We can’t, of course, but we can want to. That wanting is worth something. It was worth something to me at least. And hopefully it’s worth something to them.
Mark said that it took him about ten days before the bad news about Austin really sunk in and he could fully grasp the possibility of what lay ahead. Now it’s taken him another ten days for the good news about Austin to truly sink in so he can fully grasp the possibilities that lie ahead.
It is a fascinating process, how your mind can so quickly and completely adapt from one reality to the next. I was so there — in that worst place — so quickly, already figuring out the weekly schedule for dialysis, planning the activities we’d engage in for those four hour stretches. My mom was too — she had a mental list of books they’d read together and games they’d play. Mark and I discussed getting a Lego table that could fit nicely on Austin’s lap so he could contentedly build while his blood was being removed and cleaned by the machine whirring next to him. It’s a classic example of Whoosh … one minute your life is normal, the next it isn’t. And the next, it is again.
We’re still adjusting mentally. Still feeling a jolt of relief and giddiness when we remember some summer plan that we’d canceled in our minds. I feel like we’ve come back from the dead. Like a scene from a movie or book when a beloved character dies and you’re left there thinking, “No! This can’t be . . .” and then lo and behold, the heart monitor jerks back to life after flatlining or the hero rushes in with the magic serum or the character claws their way out of the shallow grave and voila! All is better. And you, as reader or viewer, are both thrilled and also disbelieving — “Oh, come on! As if that could actually happen”
But it actually happened.
There were a few reasons the possibility of cancer seemed so bad this time. I think, for one, it was simply that we’d gotten so close to our goal, just inches away from the finish line, almost touching the two-year trophy before it was ripped from our hands. It somehow seems like it might have been easier if it had happened at the 18-month or 21-month marks, like not such a tease.
There was also this terrible reality hovering in the back of our minds, which neither of us wanted to voice aloud, that we were somehow responsible. That our decision two years ago to keep his kidney was wrong and now we had to do it all again. Mark and I both said back in 2010 that we would take whatever consequences came our way. And of course, we knew in our heads what those consequences were. But that doesn’t make it any easier when they actually occur. I couldn’t help but think that we’d be almost done by now if we had taken the kidney. His two years of dialysis would be coming to an end and we’d be spending this summer dealing with his transplant — lots of time in the hospital, absurd amounts of daily medications, worry and more worry. But we’d still feel like we’d accomplished something. So I was left wondering if it would be worse for him to have dialysis now that he was older, now that he’d be missing so much “real” school (I would have had to pick him up at 11:30 three days a week). With all the new friends he’d be meeting for the first time, he’d be known as the sick kid, the one who never feels well, who misses all the fun stuff. How long would that identity have stuck with him before he could replace that image in the minds of his peers with the strong, vibrant child we all know?
And then, of course, the big one: the intense and overwhelming fear that this was it. I mean, how many times can you beat the same cancer? We’d done radiation and chemo and surgeries and it just kept coming back. How smart is it? How powerful? Back in December 2009, when we were trying to determine a plan of action to treat that relapse, Mark and I asked our oncologist what chemo drugs would be available in the future if the three we used for those six months didn’t work. (You don’t give the same drugs for more than one protocol; Austin had three drugs during his first eight months of chemo and then three completely different drugs during his last six months of chemo.) The response? “Palliative chemo.” Uuuuummmmm, okay, I know what that means: “Cure” is no longer the goal, palliative chemo is simply about reliving symptoms and prolonging life . . . by a little bit. A few extra months. So, cancer again would not have been good. To say the least.
But now I’m dwelling and I don’t need to. We’ve come back from the brink, no longer dangling over the edge of the cliff. I feel a thorough and deep sense of calm, like nothing really matters beyond my two healthy children bouncing on the trampoline and my pretty awesome husband mowing the lawn.
I must be the luckiest.
Friday was Austin’s last day of preschool. Ever. So, of course, here’s the obligatory playground photo, along with his previous two Last Day photos:
It’s bittersweet to leave St. Paul’s since it’s been such a major part of our lives for the past six years. Braedan’s first official day of preschool (after a good two weeks of orientation) was September 21, 2006 … the day Austin was born! So, from that moment to this moment and for every insane moment in between, we’ve been members of that school family. It has spanned all of Austin’s life so far and hopefully the entirety of his cancer, start to finish. It was only fitting that he ended two days after being declared officially and most definitely cancer-free.
As I think back over these past few weeks, I am awed, as I have been so many times before, by the kindness and intense emotional investment of all of you. Your tears and your hugs, the very thoughtful gifts (the dragon-slaying StoryPeople print from the Sweeneys and the key chain featuring my double rainbow image from Becky being my top favorites), your messages of hope and sadness, faith and joy, sustained us through this otherwise heartbreaking experience.
Knowing that you’re out there and that you care so deeply about us, about my child whom some of you have never met, means an enormous amount. I regret that I am never able to properly thank you, but know that I feel you and am fully aware of you. I read the name of each “Like” on my Facebook updates with gratitude and satisfaction (and sometimes surprise). In fact, as Mark and I sat out on the porch last Wednesday with our champagne, we both had buzzing phones in our laps, constantly updating one another with the latest messages of love and relief.
I loved that my brother told me that every time he went anywhere on Thursday or Friday, he was greeted with high fives and hugs, random people congratulating him on his nephew’s good health and even shouting it from the side of the road as he drove past. This has been such a community saga in so many ways, as you’ve followed along beside us for all these years, crying with us, wishing with us, celebrating with us.
(And speaking of celebrating with us, we are going to finally throw a big-ass party and everyone is invited. But we must gather our strength first!)
This round, if you can call it that, was interesting because it was the only time in all of our years of cancer that I felt like it was truly unfair, the first time I ever felt like, “Why me? Why us?” I know it sounds crazy that I hadn’t ever said that before, but — as much as I hate childhood cancer and as much as I’ve raged against its presence in our lives — I also know that it exists and someone has to get it. Someone has to hear those dreaded words, “Your child has cancer.” So I always sort of figured, “Why not me?” I saw no reason I should be exempt from being dealt such a hand. I’ve been given so much, am fortunate in so many ways … why shouldn’t this be my thing?
But this last time, I finally felt this just isn’t fair. We have done it. We fought, hard, and we succeeded. Austin does not, did not, deserve to have to fight this battle yet again. It would have been too much. It would have been, for the first time, completely unfair.
As my brother said, it just felt (for lack of a better term) karmically wrong. Like it just shouldn’t be. And, of course, lucky us, it wasn’t. It isn’t.
At the Family Connections benefit a few weeks ago, right in the midst of our darkest days, a friend told me that I so deserve to have the universe treat me with kindness. Of course, we know that the universe just doesn’t work that way. Bad things happen to good people (and good things happen to bad people). And suffering is not fairly or evenly distributed. But I agreed with her. I really believed at that moment (and in this moment) that the universe should treat me kindly. That I deserved it.
And most of all, more than anything, that this boy deserved it:
And this (toothless) one too: