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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.
Two years ago, on May 3, 2010, Austin and I had an unexpected overnight at the hospital due to high blood pressure, described here in a post aptly titled The Wrong Side of the Window. We were stuck in that god-awful limbo between choosing to remove his kidney and continue with chemo or venturing blindly into the post-treatment world never certain when the kidney would fail or when the cancer would return.
And then, three day later, I wrote this one, (also aptly titled) Never-Ending. Read it because, well, it definitely captures the mindset I was in back then: the fear, the utter exhaustion and frustration and resignation I felt. What we believed was the inevitability of kidney failure and dialysis looming over us, the desperate feeling I got as I looked toward the future, Austin’s future, our future. It just didn’t seem bright. Yet, my god, it has been so very bright. These past two years have been wonderful, “normal,” right. He has had the chance the just be — which is all I ever wanted for him — to just be himself and be left alone by doctors, to live his life unencumbered by the burdens of disease and hospitals. And we’ve all had that chance: Braedan to be a regular kid, to fight with his little brother without worrying that he’s fragile, to be happy or sad or proud or scared or whatever, and not have any of it tinged by being the older sibling to someone we feared might die. Mark and I have had the chance to just be, be the parents we were meant to be (which is not to say that those parents are anything close to perfect — in fact, we were much more thoughtful and attentive parents when Austin was sick, but anyway …). But just to be normal parents who get annoyed with their kids and yell sometimes when they shouldn’t — and to feel lucky for that. We’re lucky for everything we’ve had in these past two years, every normal good or bad moment.
We read Sylvester and The Magic Pebble tonight and the last lines struck me, as they always do. It’s after Sylvester has been released from the rock and is reunited with his parents who lived, for almost a year, with the belief their son was dead: “When they had eventually calmed down a bit, and had gotten home, Mr. Duncan put the magic pebble in an iron safe. Some day they might want to use it, but really, for now, what more could they wish for? They all had all that they’d ever wanted.”
On the eve of tomorrow, we still have things to wish for (I sure would not be locking any kind of magic pebble in any kind of safe just yet). But it’s true to say that we all have all that we’ve ever wanted. And come what may, it’s been a damn good two years.
There are seven kids in my backyard right now. Four boys and three girls, ranging in age from 4 to 10. Most of them just appeared, by biking around the block or by climbing the fence at the edge of the yard.
They’re hard to see but there’s one on the trampoline, two on the monkey bars and four in the treehouse.
And it’s not just today. Almost every afternoon, Braedan brings one or two friends home from Fairfax, racing down the block with backpacks slung over their shoulders. Then another one or two (or sometimes four) neighborhood kids will appear, usually on their bikes, which lay scattered over our driveway. The remaining daylight hours are filled with laughter and screeches as they jump, climb, slide, swing, bike, kick, chase, or scoot from the back to the front and back again.
I love this. I love that few of them are preplanned playdates, with drop-offs and pick-ups. I love that I can glance out my kitchen window and check on them when I can’t tell if the screams are of pleasure or pain (they’re usually of pleasure), but can also just let them go, trusting that they’ll find me if they really need me. It reminds me of my own childhood when all the neighborhood kids played together, no matter our age, endless twilight hours of Ghost in the Graveyard.
This is how it’s supposed to be.
You know how once you start thinking hard about something, it seems to pop up everywhere?
Well, this kindergarten things seems to be popping up everywhere. Yesterday, I read this article from a recent Newsweek, which focuses on parents who hold their kids back from kindergarten (often upon the recommendation of the private schools to which they’re applying) in order to give them an advantage over their classmates, particularly when it comes to standardized test scores. Reading stories like that make me absolutely want to send Austin “early” (on time) because I find it so frustrating that parents constantly push their kids to be the best best best.
Then today I read this (worth your time, I promise), not specifically about kindergarten but just about how we’ve turned childhood into some kind of race, a massive competition between the super-successful and those lagging behind, and about how we should return to a time when kids were allowed to be kids for as long as possible. It made me second guess sending him for a completely new reason, one that only a few people have mentioned thus far. Everyone keeps talking about how holding him back will give him advantages later — in his schooling, in his social life, in his future. And so much of it smacks of having advantages over others — being the best, the brightest, the oldest.
But this little essay made me think about the advantage of just letting him be a kid, right now, less stress, less structure, fewer expectations, for an entire extra year. Like a freebie. Here, little Austin, you’ve had to do lots of grown-up things already (way too many way too grown-up things; you should hear my four-year-old talk about “bwood pwessure cuffs”), so here, take a break. Stay in preschool, build fantastic vehicles out of popsicle sticks, run on the playground, sing songs and do kiddie yoga, don’t fret your pretty little head about phonemic awareness and SmartBoards and Mandarin Chinese.
I’m not so concerned about my kids having advantages over other kids (although admittedly they do — parents who’ve read to them incessantly since birth being chief among them). But I am certainly all about them enjoying the advantages of well-rounded, old-fashioned childhood — freedom and exploration and creativity and self-expression.
Hmmmm, back to the drawing board.
I’ve been asked to chime in with my thoughts on the whole Tiger Mother thing. Of course, the entire thing has been commented on by thousands and thousands, but you know I have an opinion, so here goes.
First of all, we simply must accept the fact that everyone has the right to parent in their own way and what works for one set of parents may not work for another. Part of the problem is the need people feel to declare their style as “superior,” which just creates defensiveness and a desire to retaliate on the part of others. Amy Chua’s very title, “Why Chinese Mothers Are Superior” set her up for the vast and deep anger that is being thrown her way. Had she called her essay “How Chinese Mothers Differ” or any other benign, nonjudgmental title, the fury that ensued would, well, would not have ensued with such a fury. Some people have even suggested that the title was chosen upon the advice of her publisher because a massive national controversy the day before a book is released does nothing if not drive up sales.
So, I’d like to propose a kinder, gentler way — that we allow others to parent in their own style, according to their own values and background, while we parent in our own way without casting judgment on one another (or one another’s offspring). That being said, I am now going to cast a little judgment on both styles of parenting, the Chinese and the Western (as defined by Chua).
Obviously, I believe in unfettered joy as a natural and vital part of childhood. A child’s ability to experiment freely with their vivid imagination, to use their inherent creativity to see and approach the world in unique and nontraditional ways, to define themselves based on the basest qualities (what they love, what they want) is, in a word, wonderful. As in full of wonder. I don’t think we should do anything to squash that sense of freedom and expressiveness, that joyous ability to focus so thoroughly on whatever seems interesting in any given moment without care for whether it “matters.” Think of a three-year-old studying a caterpillar creeping across a leaf. Should that child be left alone lying on his belly in the dirt to study that leaf for as long as it takes to satisfy his curiosity even if we grown-ups consider it boring or a waste of time or should he be dragged inside to practice the piano (which, by the way, said child may think of as boring and a complete waste of time)?
I am all for exploration and experimentation and imagination run wild. That’s what being a kid is about. And when else in life do you get to “waste time” with such a sense of purpose? Don’t we all wish we could latch on to some silly notion or frivolous idea and immerse ourselves in it for hours or days or weeks on end?
I obviously lean more towards the Dolphin Mother end of the spectrum than the Tiger Mother (and don’t get me started on Mama Grizzlies!). But there are some aspects of Western parenting, particularly in the past decade or so, that I find worrisome. As Chua points out, there is a tendency among the current generation of Western parents to insert themselves into their children’s lives in order to prevent them from experiencing failure. I think failure is great. Granted, it’s not fun. But it is enormously important. Am I saying that I plan to rejoice when my child comes home crushed by a bad grade or devastated after being cut from the team? No, of course not. I will hug them and suffer alongside them (perhaps even more than them) but I will also know that they are learning a valuable life lesson. We simply have to fail. Hopefully not all the time, mind you! But failure is not, in and of itself, a bad thing. And as parents we need to let our kids fail without blaming others (the coach who pushed too hard, the teacher who expected too much). I don’t believe that kids need to be coddled in that way. They need to own the failure in order for it to be useful.
But all this Tiger Mother business and the huge outcry against her (and the loud support in favor of her) is simply one more example of how lousy we’ve all gotten at disagreeing. You’d think that members of this society would be experts at disagreeing because we do it so darn much! But we’ve really gotten very bad at it. If I read Chua’s article and think to myself, “Wow, that seems harsh,” or even “Damn, I would never treat my kids in such a cruel way,” am I somehow then entitled to go and send her a death threat? A death threat! The woman has received hundreds of them each day. That’s silly, people. Just disagree and get over yourselves.
Parent your children in the very best way you know how. Do some research on key issues like feeding and sleeping, have some basic understanding of the stages of development and what to expect out of each. And then go from your heart. Listen to your children and listen to yourself and do what feels best. Are you gonna make some mistakes? Of course. Amy Chua did and her book addresses that. Those of us with different styles and different (not lower) expectations of our children will make mistakes too. Our kids will most likely forgive us (as Amy Chua’s have), whether they end up as concert pianists or shop-owners.
I just hope mine end up happy.
Well, the work has begun. And my, what a lot of work it is!
We woke up yesterday morning to an army of Amish carpenters in the backyard, laying the foundation for Austin’s treehouse. I mean, his tree-village. It is enormous. I can’t quite picture how it’s going to end up but I can definitely tell that it is going to be very very large.
The boys are thrilled, of course, and eager for it to be finished. Looks to me like it should take weeks and weeks but the men said they’d be done in another four days. Which works out perfectly because we leave for Maine tomorrow (yay, finally!) until Tuesday evening, so there will be quite a sight awaiting us upon our return.
I spoke with the workers yesterday and introduced them to Austin, who smiled shyly from my arms but refused to speak or make eye contact. They asked about his story and after giving them a brief version, one man said to another, “That sounds just like your son.” Turns out one of the carpenters has a son who was diagnosed with neuroblastoma in his kidney when he was nine months old. He said for the first day or two (which happened to be Christmas Eve and Christmas), the doctors thought he had Wilms. He lost one kidney and had a full year of chemotherapy and is now a healthy and normal third grader.
One of the three brothers from the contractor company also had leukemia as a teenager and his family was sent to Disney World as a gift from Make-A-Wish. So you see how this all comes full circle. I can’t wait for the day, well into the future, when Austin or Braedan make a wish come true for some sick child and get to tell the story of their own dream treehouse and all the magical childhood memories they made in it.
Pictures to follow, I promise . . . when we return!
I don’t use that word lightly. I’m not just exaggerating or whining about how long our days and weeks and months have become. No, I really mean it: I can’t clearly see an ending.
This blood pressure issue, while a minor sideshow to the grand drama of Austin’s cancer, is one of those sneaky things that is going to follow him — and us — forever and impact the rest of his life.
He’s had high blood pressure since all this began nearly three years ago. It’s due to the damage his kidneys have withstood (or not withstood). The real bummer is that hypertension is both a sign of kidney damage and a cause of kidney damage. In order to keep that little partial kidney as happy as possible, we really need his blood pressure in a perfectly normal range all the time. Which never seems to happen. Now, even with the addition of another medication, it’s still running slightly high. And the manual cuff I have at home is frustratingly difficult to use, so Mark just ordered me my very own (and very expensive) automatic blood pressure machine. How’s that for a nice Mother’s Day present?
And then there’s the near certain failure of that kidney. I am so hoping we can make it at least a few months into the post-treatment period before dialysis. Just to give us a much needed break without the two things overlapping. Of course, I really want it to last the full two years, but that seems less and less likely each day as his numbers creep in the wrong direction, one slipping down that we want to stay up and others jumping up that we want to stay down. He has another GFR on May 17 so we’ll see if it’s managed to hold steady at its new low or if it’s dipped into the this-is-really-happening, time-to-start-dialysis range.
And then there are all the other risks far down the road that will trail us for years to come. Assuming a transplant goes well and this cancer doesn’t return, he still has a high risk of developing a secondary cancer, probably leukemia, from all the radiation and chemotherapy his body’s been subjected to.
I hate the idea that his life might not be normal. That, more than anything else, is what I wish for both my boys. Not super fabulous, not spectacularly extraordinary, just normal. So he can be a kid and go to school and learn to read and play kickball and ride a bike and have a girlfriend and go to college and live by himself and get a job and see the world and fall in love. So he can be a dad and then a grandpa. But some days I feel doubtful that all those things could ever happen. The thing I fear most is, well, it’s The Thing we all fear most. But the thing I fear second most is that he gets so bogged down by all of this, so burdened by lifelong health problems, that he someday says to us, “Mom, Dad, why did you bother? Why did you work so hard to save my life when now my life sucks?”
I know it seems unlikely. Not our joyful little Austin, who never lets anything get him down, who still runs and leaps and climbs and rides, who manages to squeeze joy and laughter out of each and every day, no matter the horrors he endures . . . our happy little Austin would never say such a thing. But I worry nonetheless. I worry it will be never-ending.
No time to blog…too busy trying to keep up with Braedan!