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I apologize in advance if this one is disturbing for you, but I feel it’s a necessary part of our full story. On Austin’s birthday last week, Mark and I took a moment to look through the photo album that contained images from his first birthday, and to reflect for a minute on just how far we’ve come. As we flipped through a few months’ worth of photos, I realized that those of you who started reading after I launched this blog, but never read the CarePage, missed out on some of the most serious days — and most disturbing images — of his and our lives.

So, here they are, in all their gory (“L” purposefully omitted).

This first one was taken the morning of August 1, 2007, our third day in the hospital. You can see that his belly is a bit distended, but not alarmingly so. This was the last moment his skin was unmarked by scars, as he was preparing to go into his surgical biopsy which left him with two inch-long incisions on either side of his abdomen and a Broviac line in his chest:

Sleeping post-surgery with his mama. It was now confirmed that he did indeed have cancer:

And with Caryl. You can almost see one of the scars under his hand:

And with his Gram. Poor sad baby, he held on to that juice box for dear life:

But after eleven days, we went home and he started to get back to normal. The Broviac line under his shirt is what causes all that lumpiness:

Still smiling:

Still playing:


And then things began to change. When he was supposed to be getting better, he instead got worse. Over Labor Day weekend, right after a blast of three chemo drugs, his belly just kept growing. Growing and growing, bigger every day. I literally tied a piece of ribbon around it and measured it on Saturday. It was one centimeter bigger on Sunday. And another on Monday. And by Tuesday, we were back in the hospital:

The next day we learned the truth: the tumor, which at diagnosis was 7 by 7 by 14 centimeters, was now 10 by 15 by 21.

And yet he still tried to smile:

But it wasn’t easy:

And then there are these next ones. Taken on Friday, September 7, 2007, two weeks before Austin’s first birthday and mere minutes before we brought him to the pre-op room for a six-hour surgery that would remove his right kidney and a five-and-a-half pound tumor:

I know, I know. I was there. I saw these images with my own eyes. In my own child. So believe me, I know how bad they are:

And hours and hours later, he was returned to us, nearly six pounds lighter:

And so he was lighter and, we hoped, healthier:

But it was six days before we knew why it had grown so horrifically and a full ten days before he was allowed to eat again. Ten days with no milk, no food, no water, except for the few ice chips I sneaked him one day (which he promptly threw up):

He was a mere shell of the boy I once knew:

Those were the worst days for me. Of my life, I think. But he still managed to smile:

Finally, we got to go home, for five days, where we celebrated his first birthday:

And when those five days were up, we were right back in the hospital, getting ready for another surgery. But this time, Austin’s belly was fat from all that cake:

I know these are sad and I know they’re shocking. But I’m okay with looking at them. In a way, I think it’s good: we should never forget. But that was then.

And this is now:

And we are the luckiest.

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Two other little tidbits about the Rocket Car party.

On Wednesday afternoon, the day of Austin’s actual birthday and the day before the party, the Rocket Car guy called me up at 3:30 to say, “Just checking in to see if you still want me to come even though it’s raining.”

Hmmm. Well, it was raining. A lot. But I quickly looked up the forecast and said, “Oh no, we’re fine. Tomorrow looks great.”

“Tomorrow? I though you wanted me to come today!”

Ummmmmmm, no. “No, definitely tomorrow.” And my heart was beating as I thought, Oh no. What am I gonna do with all these kids now?

So he checks his calendar, realizes he’d written down the correct date but wrong day and said, “No problem. I’ll be there.”

But thank god it was raining or he would’ve simply shown up at 4:30 on the wrong day and my kids would’ve been like, “Uh, mom? Why’s the Rocket Car in our driveway?”

And then the other funny thing was that when we’d first made the arrangements over the phone, the driver expressed some concern about the rides taking place during rush hour. So I gave him a good route that went east down Fairmount (while all the cars from downtown would be heading west) and then looped around some side streets. Well, as I found out only after some actual grown-ups rode along, he took the kids down Fairmount to Coventry to Cedar and then Lee! All major, crowded  roadways. Can you imagine if you had pulled up to the stoplight next to a bunch of unchaperoned four-year-olds riding an old relic of a roller coaster at the corner of Cedar and Lee??

At least it’s not as bad as these parents….

Surely you must understand that I simply cannot keep myself from going all out for Austin’s birthdays. Which means, by default, that I go all out for Braedan’s birthdays too. We’ve had a lot of years of elaborate parties around here!

Last spring at an auction, Mark and I purchased an hour on the Euclid Beach Rocket Car. We never mentioned it to the kids, knowing that the moment when it pulled up to the house with all its bells and whistles was best left a surprise. So Thursday afternoon, Austin had a slew of friends over on a thankfully sunny day when lo and behold, the Rocket Car appeared in our driveway.

The kids first looked at us in confusion and then asked in breathless and hopeful voices, “Can we ride?” “Of course, you can ride!  Hop on!” What happened next can only be described as preschool mayhem. The little critters climbed aboard, jostling for a seat, three kids per row. And next thing you know, the guy takes off. Zooms backward down the driveway and away down the street.

Without a single grown-up on board.

There were at least eighteen kids riding, including several as young as three. And one very mature nine-year-old. And they were gone!  My sister-in-law looked at me and said, “Krissy, is this part of your whole free-range parenting thing?”

Of course, they were back within ten minutes for another load (parents included this time) — all kids accounted for and no one screaming for their mommies. The next hour was spent zooming around the neighborhood, with Austin riding every single time, sporting an enormous grin and windblown hair.

Then it was time for the secret cake, which I had decorated while the kids were at school and then  hidden at the neighbors’ house. A full-blown Rocket Car with photos of every child riding.

All in all, we had some very happy kids that afternoon and one especially happy Birthday Boy.

I just hope I’m not expected to top it next year!

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.

This one is mostly in response to a comment I got on Facebook about how hard it is to allow your kids to roam the neighborhood or walk to school when there are so few other children around. I absolutely agree. When I was young and walked back and forth to school without my parents, I was always in a crowd of at least ten kids. And we ranged in age from kindergarten to sixth grade. That is definitely not the case today, especially in our neighborhood.  There are simply fewer kids and then fewer of those use the public schools and fewer and fewer of those walk.

Which I find rather ironic, considering the relative danger of walking to school (even totally alone) versus driving in a car. In fact, just the other day Braedan asked me about the most dangerous thing I’d ever done. I paused, wondering if I should say jumping out of an airplane or testifying against a drive-by (actually bike-by) shooter in Compton or running alone in Mexico (all things I’ve done and all undoubtedly dangerous). And then the answer jumped out at me, of course: “Driving in a car.”

I think you can sum up our different generational attitudes on safety and how we welcome (or shun) freedom by looking at porches on houses: Old houses have grand front porches that span the entire length of the house, where people would gather and neighbors were welcome and any old lady who was out working on her flowers or having her morning coffee, could watch the children as they walked past on their way to school. Now, on newer houses, we build back decks, usually behind tall fences, facing away from the street, away from anyone you don’t already know.

Maybe we all need to spend more time out in the front.

And, on a completely unrelated note, if you’re around (and especially if you work there!), I’m giving a talk tomorrow in the Atrium at University Hospitals at 10 as part of the presentation of Hyundai’s Hope on Wheels. Feel free to stop by.

Give kids the tiniest opportunity for independence and, I swear, they take it and run. My children have been transformed over the past few weeks. They play outside on their own for hours on end, while Mark and I actually get things done around the house (today, it was painting the new bathroom). Yesterday, they rode down the block to the neighbors’ house and played in their yard. Today, they went off to the school playground on their own. Well, not entirely on their own, they did have a friend who is almost ten with them. And I did make Braedan wear a watch and come home after an hour to check in.

But still, they did it. And it is great.

In light of the comments I got after my last post, I’m eager to have a broader conversation about how we allow our kids the freedom to navigate their environments without hovering (or worrying) too much. Especially in today’s world, with twenty-four hour news cycles detailing every awful thing that can happen if you dare look away. I’ll admit, a couple of times I wanted to ride my own bike over to the playground just to make sure they were okay. I mean, Austin’s still only four! But with a seven-year-old and a nine-year-old, I knew he’d be okay and held myself back.

I really think that it is perfectly okay — and even necessary — for our kids to make mistakes and get hurt. And then to figure out what to do about it on their own.

This article from Time magazine in 2009 is fabulous and funny and eye-opening (and the accompanying photo is all of those things).  But I don’t really want to have a conversation about the relative value of helicopter parenting versus free-range parenting, so much as I’d love to hear HOW those of you reading do it.

When it comes to giving children freedom (and responsibility), what has worked for you and what hasn’t? And, for those of you in the grandmother (or father) set, what has changed since the days your kids were young and do you see those changes as good or bad?

Of course, when you’re parenting two and four-year olds, much of this is irrelevant. You’re obviously not going to send your son off to preschool on his own. But for elementary-age kids, it’s the perfect time for them to develop a sense of competence and ownership over their neighborhood and their actions and their own safety and well-being. I was just about to write, “I am so glad I live in a place where my kids can do that,” but I think most of us do and may not know it. (And I think some people would look at where I live and not think that!)

Sooooo, how does it work? What do you allow your kids to do as they get older? And has that been successful? And how is it different from when you were young? (Besides the fact that we all walked to school barefoot through the snow, uphill both ways?)

You’d think we parents would learn after a while that so many of the things we worry about regarding the development of our children seem to eventually just resolve themselves. I remember fretting over the fact that Braedan was the last kid in his playgroup to learn to walk.  This was a wonderful group of moms I’d meet at Heights Parent Center when our first babies were just a few months (and sometimes just a few weeks) old. We started getting together multiple times a week, mostly for ourselves (it was way more about the moms than the kids back when they were still babes in arms), and collectively watched as each child learned to sit up (Braedan last), crawl (Braedan last) and walk (Braedan definitely last). There was nothing wrong with him; he was simply content wherever he was placed — happy to look around or play with whatever toy was within his reach; he truly had no need to move. But right at that moment when I started worrying aloud to Mark (“But, honey, they can all walk. Even the ones who are six weeks younger than him!”), he walked.

Of course.

And so it has gone with each and every stage, and so it continues to go. Austin, whose shyness I was so worried about just a few months ago, has completely opened up. He’s not broadcasting his every move to strangers, but he has ordered his own meal in a restaurant and occasionally says thank you to the moms hosting him for playdates. He started his Pre-K year today, without a moment of hesitation. He let me walk out that door without shedding a tear, a first that’s been a long time coming.

And Braedan is suddenly Mister Independent. I’ve long worried that our generation of parents hovers too much, organizing our child’s every moment, tracking our child’s every move. So I’ve been pushing him since last spring: “Just go, Brady, just ride your bike down the street, just find someone,” when he’s bored. And finally, he’s doing it. Well, not quite riding down the street and befriending strangers (even I might warn against that), but heading off with friends to play at the school playground, without Mom but with little brother in tow.

Last week, I needed to pick up Austin when Braedan was home with a friend and he said, “Aaaaww, do we have to go? Why can’t we just stay here?” I thought about it for all of 30 seconds and said, “Ok, fine. Here’s my cell number, stay right here in your room and play.” I was back within nine minutes and they were — of course — totally fine.  He’s still only seven, but I was babysitting by the beginning of third grade, one small year ahead of where he is now. (I know that sounds crazy, but tell them, Caryl, it’s true.)

Tomorrow he and the neighbor girl will walk to school unattended. That may not seem like a big deal to those of us who walked without parents from kindergarten on, but not many people seem to do it anymore. I think it’s such a good and important way to gain independence. More than just the walking safely — it’s being able to manage yourself enough to make it there on time. I don’t remember any of us ever wearing watches as we walked our three-quarters of a mile four times a day (those were the days when we still went home for lunch), but we were never late. We knew how much we could play along the way and still make it on time. We were in charge.

So I am thrilled with these recent developments. Not that I want my beautiful babies to grow up too fast, but I do want them to be confident enough in themselves and capable enough to do things on their own. I want them to feel that sense of efficacy — that oh-so-important “I can actually do this” feeling of success.

It’s their time.

Where were you?

For me, it was completely random. I was in a place I had never been before and would never be again. But one that is forever seared into my memory.

A few weeks into my one and only year teaching middle school in Cleveland Municipal, I had a two day in-service for something I’ve completely forgotten and was sent to a computer lab at Margaret Ireland Elementary School.  After several hours of sitting in a roomful of teachers, bored but lulled by the sun streaming in the windows and (more importantly) by the fact that we had no unruly middle schoolers to control for the entire day, we were given a ten-minute break to use the bathroom and get a drink. I walked down the hall, awed by the sweet little children quietly learning (pathetically unlike the middle school where I was employed), when I passed a teacher who worked there. “It’s so peaceful here,” I couldn’t help but gush.

“Peaceful?!” she shouted, clearly distraught. “Peaceful?! We’ve been attacked!”

I had no idea what she was talking about and actually thought maybe she was overreacting to some minor elementary disciplinary issue (boy, she should check out Spellacy if she wants to see attacks). So I returned to the computer room and found it abuzz. People trying to get online but frustrated by the old dial-up connections, slower than ever on that day, some talking anxiously into their cell phones (big, flip-phones with antennae — my, how much changes in ten years), words flying through the air: attacked, World Trade Center, airplanes, terrorists, Pentagon, … war.

War? Wait … what? War doesn’t happen here.

Bits and pieces of information were shared by anyone with a connection to anyone. But nothing really made sense. Obviously, at that point, no one knew anything about what was happening and, of course, as we all found out over the days and weeks ahead, none of it could have made sense anyway. None of what was post-9/11 could have ever made sense to those of us still living in pre-9/11.

Except that it had happened. It had, indeed, happened. Finally, our instructor sent us home and two teachers piled into my car and drove through an oddly crowded by subdued downtown to the duplex I shared with Mark, my fiance of just a few weeks. It’s funny that I spent that afternoon with two people whose names I barely remember. One was Matt (I think?) and I know that he was in the National Guard, which I’m sure gave that day a whole other meaning for him. The other was a young woman named Erin who only lasted a month or two at that extremely tough school and then I never saw her again.

But we were together that day. Because no one wanted to be alone. Mark came home, released early from his law school classes, since Cleveland believed it was under attack too with Flight 93 circling overhead. We all sat in my living room, watching TV in stunned silence as the footage played over and over again. Towers being hit over and over again, towers falling over and over again, as if hundreds of planes had hit hundreds of towers and tens of thousands of terrified workers had jumped to their deaths.

I don’t remember much about the rest of the day, except talking to my mom on the phone, as she checked on the safety of each of her children. What did we have for dinner that night, I wonder, those of us who sat safely in our living rooms crying in front of the television while our own country was in chaos? While people in nearby cities were searching for their loved ones or lying crushed under piles of rubble? We must have eaten and eventually town ourselves away from the news to brush our teeth and go to bed, right? Right?

I remember in those first few days being most upset by a few young women I saw on TV who were searching for their fiances. As a newly engaged person who felt like I’d finally found my “one,” these were the people I most identified with. If it happened today, I would be most saddened by the mothers who’d lost their children. But at that moment in my life, the greatest love I’d known was Mark and so those were the stories that broke my heart. I do hope they found someone else, those women on the verge of happiness.

I drove past Margaret Ireland Elementary today with Austin, on our way to the granite store downtown.  It looks the same. But I know it’s not.

“That’s where I was,” I said out loud, half to Austin and half to no one. That’s where I was when everything changed.

Where were you?

 

September is Childhood Cancer Awareness Month. Which unfortunately does not result in the blanket of pink ribbons you’ll see next month for Breast Cancer Awareness Month. Nothing against breast cancer awareness, of course, but how many of you even knew that gold was the color for childhood cancers?  Not many, I bet, because I didn’t know it myself until quite recently.

But if you’re already a member of this small world of pediatric cancer families, you know that there are a lot of events taking place in an effort to raise awareness and further research. The President issued a lovely proclamation last week which not only recognized those children (and families) currently in the fight but also the lifelong health consequences of treatment for those who’ve survived.

And I’m excited to announce that our sweet Austin was featured today on the Facebook page of The St. Baldrick’s Foundation as part of their month-long campaign to put a face to this disease.  I’m not sure if you can see it if you’re not on Facebook (I know you’re out there, you non-Facebookers) but here’s the link.  It’ll only be up for a few days so please “Like” St. Baldrick’s page (everyone should like St. Baldrick’s, Facebook or not) and check it out.

And maybe someday, we’ll all associate gold ribbons with childhood cancer. Or maybe someday, we’ll actually cure this dang thing and we won’t have to have Childhood Cancer Awareness Month at all (except in history class!). Wouldn’t that be nice?

A successful day all around.

Austin is good. Liver, kidney and lungs remain unchanged, heart has actually improved slightly, lab numbers good. He is now officially sixteen months cancer-free — the longest cancer-free stretch he has had in his entire life.

We should have two more sets of tests like this before he reaches the golden two-year mark. Then his scans move to every six months and some things, like the chest CT, get downgraded to a chest x-ray which exposes him to considerably less radiation.

He handled the day well, although it does get exhausting to be there for all those hours and he feel asleep in the car on the way home (with Mark, who had to relieve me at 2:50 so I could be there to walk Braedan home from his first day).

And speaking of that first day, he is thrilled. A way different reaction than he had last year when he came home and cried for three hours. (Not that there was anything dramatically wrong with his first grade teacher — she was perfectly nice — but he never felt a warm connection to her and Braedan is all about the warm connection.)

He asked tonight if he had school again tomorrow and when I said yes, he cheered, “Yay! I get to see Mrs. Nice-and-Fun Teacher!”

Now I just need all of today’s results to last and last and last.

Heading out

Too cool for school?

Hey, don’t forget about me!

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