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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 days 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 to 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.

When I was in eight grade, we had an assembly and, while I can’t remember what on earth it was about, I do know that the man up on stage opened up by asking us our definition of success: What does it mean to be successful? I quickly rose my hand and offered my answer: “Being happy.” And I got laughed at.

Now, I was a very popular middle schooler and knew that my peers and classmates weren’t laughing at me so much as at the radical notion of success being defined, not by money or fame or power, but by something as ordinary and seemingly achievable as happiness.

But, after the death this weekend of another icon of my middle school years, I stand by my pronouncement. I was never a huge Whitney Houston fan, she didn’t sing my favorite ever song and I certainly hadn’t given her much thought over the past ten (or twenty) years. But, as I found myself singing “Greatest Love of All” and still knowing every single word by heart, I must acknowledge that she is undoubtedly part of the soundtrack of my life. From eight grade graduation to school dances to “One Moment In Time” (and imagined greatness on the field hockey field), her songs and her voice provide a backdrop to my adolescence.

And, as she joins others from those mid-80s glory days (The Kind of Pop, of course, and movie stars like River Phoenix, who we all loved), I know that the brave fourteen year old girl who equated happiness with success was right. I would take my life over their’s any day.

Today is a day we weren’t sure we’d ever reach: Austin’s 5th birthday.

And yet, here we are.

I was the parent helper this morning for his preschool class, where we celebrated with frosted zucchini muffins (at Austin’s request) to which one child asked in disbelief, “Are there really cucumbers in here?” And moments later, “Can you take the onions out of my cupcake?” (He did end up eating the whole thing.)

Then we spent hours baking cakes for tomorrow’s party. After school, he and Braedan worked happily with his new Lego set, the two of them side-by-side on the living room floor (getting along!). Then it was out to the yard in the rain with Mark and our carpenter (who might as well be part of the family) attaching a rope ladder to the back of the tree house.

Music has been playing on the radio all day, also at Austin’s request, and after listening to the Juno soundtrack, we danced around to his favorite, the Putamayo World Playground CD. He had wandered away by the time the eleventh song came on, a beautiful rendition of You Are My Sunshine. And I couldn’t help but think back to the days (and weeks and months and years) that I held him in my arms in a hospital room, singing quietly into his ear, trying to soothe him after some particularly painful medical procedure. And that song and those words, “Please don’t take my sunshine away,” reached a fevered pitch in my head and my heart, as I so feared that one day I might have only memories of this dear dear boy.

But here we are. And here he is.

Happy Birthday, sweet Austin.

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.

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.

A rousing goodbye from the Gallagher family to 2010. It has had its high points, that much is true. But, boy, has it had its lows.

Last New Year’s Eve, Austin was in the hospital for chemo and radiation.  It was, remarkably, our very first holiday to spend in-patient (but not our last). Braedan went off with friends and had a sleepover on the westside, happily celebrating with too much stimulation and too little sleep. It was Mark’s night to stay with Austin and, usually, we made our switches pretty quickly, always eager to take full advantage of those few free moments away from the hospital. But it was New Year’s, so I decided I’d stay until midnight before heading home by myself. Mark picked up pizza and we had wine while Austin zoomed his remote control cars around the room, all the while hooked to his chemo pole.

By about ten o’clock, the two of them were lying in bed sleepily watching basketball, and I was pacing the room with nothing to do.  Mark kept urging me to go home and get some sleep; I kept insisting that we be together at the stroke of midnight.

“It’s just a day, honey, just like any other. One date on the calendar. We’ll have more New Year’s Eves together.” All together, though? I wasn’t so sure.

Finally, giving in to my own exhaustion, I kissed them both and headed out into the cold. As I was driving up the hill, I contemplated stopping at my parents’ house, where I knew they were gathered with friends having dessert and champagne after a dinner out. Or at another friend’s house, also nearby, who was having a small party. I didn’t really have to be alone, I mean, I had options. But it just seemed like so much work, I’d have to tell the same Austin stories over and over, like how I’d ripped his Mediport out by accident twice over the two preceding days.

So I went home and straight to bed, which was where I needed most to be. The particular chemo Austin was on that week required his pee to be measured every two hours — which meant he was sleeping “like a baby” (and not in a good way), so a solid night was definitely in order.  After about an hour of fitful sleep, I was awakened by the sounds of celebration coming from Coventry Road — bars and cars, people cheering and horns honking. I checked my clock and sure enough, 12:01, we had passed into a new year. I felt alone, but strangely not as alone as I’d felt on some New Year’s past, when I’d actually been surrounded by people. I knew my life was full and complete, with my wonderful husband and my two dear children, and I just held on to the thought that next year would be different.

And different it is. In only good ways.

So, goodbye 2010. And hello 2011. Here’s to wishing it’s nothing but bright.

Well, I think we’ve finally dug out from under the pile of wrapping paper and boxes and excessive toy packaging (how ridiculous are those tie tabs that hold toys to their boxes?). Christmas was another major success for the Gallagher boys. Somehow my attempts at simplicity always fail (much to their relief and delight).

Santa brought new bicycles, Braedan’s outfitted with a speedometer.

Austin’s is small enough he’s able to maneuver it around the house, so he’s been pedaling away, lap after lap through the kitchen and living room. I’m not quite sure his choice of attire is what Santa had in mind though:

Braedan has to take his outside (clothed), which he somehow convinced me to do on Christmas morning when we rode through the snow to my parents’ house. Not great cycling weather but we managed (and even went “12.6 miles per hour!” — I had to keep reminding him to look up every once in a while).

Christmas Eve was lovely, as always, although it is rather difficult to snap a good picture of five sweet grandchildren ranging in age from 9 months to 7 years. We certainly tried though (these are the very best out of at least thirty):

Braedan celebrated his birthday (again), with cake and candles and a few more presents (just what he needed!):

Mark and I got them some fun accessories for the treehouse — a periscope and steering wheel and this cool extension thing for the tube slide  so when you come down it in the summertime you land in water. I painted wooden wishing stars to hang inside from the peaked ceiling (I was considerably more excited about them opening these than they were):

Braedan had purchased gifts for the rest of us at the holiday shop set up in his school cafeteria and I’ve never seen him so excited about giving.  He carefully wrapped each item, complete with tags and bows, and as they were waiting (im)patiently at the top of the stairs on Christmas morning, he announced that he wanted us to open our gifts first. For Austin, a little red racecar and a light-up key chain (you know, for all his keys), Mark got the obligatory #1 Dad pen and a tool set, and yours truly received “diamond” hoop earrings and a little gold butterfly ring. Which, yes, I wore all that day and several times since. It was all very sweet.

So, all in all, I’d say all our Christmas wishes have come true.

We’ve had a very busy few weeks leading up to this day. Starting with Braedan’s holiday concert. Here he is with two of his buddies after the show:

And during the grand performance:

And Austin discovering the reverse camera option on my phone (during said grand performance):

Then there was the visit with Santa Claus with their cousins:

And the carefully written letters providing evidence of “goodness”:

(On page 2, after the asking part): “I was good. Because we are buying stuff for families that are poor.”

Then we celebrated Braedan’s birthday at school, with homemade “B” brownies:

Following that, there was the obligatory kid party at Great Lakes Science Center (and fabulous cake made by our old Edgehill neighbors):

This past Monday, my little elves and I drove a full carload of goodies down to Providence House, everything from hand-knitted blankets (thanks Cori) to toys and games (thanks Judi) to boxes and boxes of baby food and diapers and paper towels and bleach (thanks Braedan and Austin).

And now here we are, on this most special day when my sweet Braedan turns seven (we did spend one Christmas in the hospital, after all!). As he ate lunch today, having just noted the minute of his birth (12:46pm), he sighed and said, “Wow, look, we all made it another year.”

Wow, indeed.

Happiest of holidays to you and yours.

 

Yesterday, Make-A-Wish hosted a small gathering to “reveal” the treehouse.  It was such a neat day for the boys, starting with the delivery of one hundred helium balloons, which Mark placed on the top dormer of the house.

That can’t be a bad job, huh?

Don’t fly away


Then the arrival of family and friends to celebrate alongside us. I so wish I could have invited all of you, but I think when it’s finally painted and we’ve put all the finishing touches on the inside, we’ll have a little Open (Tree)House of our own and you can all come marvel at this spectacular piece of construction.

Even a fire pole

One of the builders came too, with his wife and three little girls. I wish there was something I could do besides say “Thank you” over and over, but there doesn’t seem to be. Each day as the guys were out working, I’d offer coffee or water or lunch but no, nobody would accept anything. I suppose if there’s no way to pay them back then we just have to pay it forward.

Fox 8 sent a cameraman and I am extremely pleased with the piece they aired on the news last night. Here’s a link to the video and here’s the less exciting news blurb on their website.

All in all, it was a really special day for all of us. Tonight, as the kids were waiting to go trick-or-treating, Mark asked them what their favorite holiday was. Braedan said he likes all of them: “I love candy so I love Halloween. And I love eating turkey and pudding [I really don’t know where he got that pudding thing] so I love Thanksgiving. But I love getting presents plus it’s my birthday, so I love Christmas.” And I said, “Yeah and hunting for eggs is fun so we like Easter. And fireworks are fun so we like 4th of July.” And then he said, “Yeah and wishes-come-true are fun so we like yesterday.”

Yeah, wishes-come-true. In more ways than they will ever understand.

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?

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