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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.)

photo(195)Dressed for the part

photo(196)Yes, he’s using that cast as a bat

photo(197)

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.

I seem to have entered a new phase of parenting for which I feel most unprepared.  Braedan, currently completely engrossed with reading The Diary of a Wimpy Kid books, purchased a “Dude Diary” at his school book fair the other day.  It came with a key and everything!

Of course, he worked extra hard to hide said key from Austin, which is sort of ironic since Austin doesn’t know how to read yet.  But it gave us an opportunity to talk about respecting each other’s privacy, which then gave me an opportunity to ponder how much privacy a parent should grant her child.  I casually asked Braedan in conversation if the diary was only for him or if anyone else could ever look at it.  He promptly said only for him to which I replied, “Oh, okay,” like it was no big deal. But I suddenly felt left out — like there were some deep dark secrets he was sharing with the Dude but not with me!

After one short day, he excitedly showed me the pages, which are a series of prompts, like “If you had one superpower, what would it be?” (Braedan’s response was “to make all the kids be nice.”) There was nothing private or personal about any of his entries and he shared them willingly and proudly with me. The whole thing turned out to be a silly teaser of what is yet to come.

But it brings about some important issues of parenting: How much privacy do you grant your children and when does that start?  If your eight-year-old were to tell you not to come into their room or not to look into that third drawer of their desk, how would you react?  What if it’s your twelve-year-old?  When does the dynamic shift from you controlling most, if not all, aspects of their lives to allowing them to make their own decisions and have their own space, both physically and emotionally?

I think sometimes parents use safety concerns as an excuse to overstep those boundaries, always checking up on their kids simply because they’re nosy.  I agree that the world, especially with the Internet, can be a dangerous place for teens, who often don’t have the sense or know-how to navigate potentially dangerous situations.  But I also think we need to let our kids grow up and make mistakes and experiment and figure things out on their own, without our constant interference.

Of course, that’s easy for me to say because Braedan’s not quite there yet and, boy, am I glad.  I’m not ready to give up the reigns or have a dark curtain drawn over his emotional life. I love that he lies next to me in bed each night and tells me everything he’s thinking. But I know the day will come when he doesn’t and I also know that I probably won’t be ready for that no matter when it comes. He will be his own person, with his own ideas and thoughts and feelings and he may only share those things with the Dude and not the mom.  It’s not today, thankfully, but it will come.

How have you handled it?

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.

Thank you for the many, many comments pouring in on this subject.  It is always good to hear from parents who’ve struggled with the same issue, both to borrow your techniques and to hear how dramatically your kids have improved as time’s gone on.  In fact, there are some people I’m stunned to hear were shy as children (i.e., one of Heights High’s shining stars of stage).

I agree that this is a phase and that he will improve as he gets older. And indeed, he already has: his second year at preschool was much more successful than his first. And this definitely seems to be a mommy-problem because he is much more likely to interact with kids and adults when I’m not around. But when I’m an option, it’s all me, all the time, which is perhaps why I find it so frustrating. I almost feel like I’m a bad influence on him because my presence allows him to revert back to his babyish, withdrawn self!

I do need to remember to gently encourage interaction without pushing him too hard. I like the idea of just having him wave at people or look at them when they greet him, even if he doesn’t respond verbally. And I also agree with the observation some of you made that it must be hard for him to speak up when Braedan is so verbose. Braedan befriends anyone, chatting with our waitress or telling our life story (or his version of it — yikes!) to the cashier at the grocery store. He answers for his little brother (“Oh, he’s four and a half,”) before Austin could ever have the chance to open his mouth. I find myself saying to Braedan, “He can talk, honey” and Braedan looks at me like I haven’t been paying attention and says, “Yeah, but he doesn’t like to, Mom. Du-uh.”

And, of course, I have to remember that Austin’s behavior isn’t about me (another of parenthood’s most difficult things: laying aside the Mommy Ego). It’s not about me showing off to the world what a special and bright child I have. It’s about letting him grow up in a way that he feels safe and supported. It’s also about pushing and helping him grow and expand beyond the boundaries he’d choose for himself, but still in a way that he feels safe and supported.

So, we move forward, one day at a time, one word, one friend, one wave at a time.

Another year gone by and all of a sudden I have a rising second grader. I know parents everywhere right now are marveling at the fact that their sons and daughters are graduating from kindergarten and elementary school, from high school and college, shaking their heads and wondering how on earth their babies got so darn old.

Braedan and his buddies at the first grade picnic

Lola’s ready for first and Braedan’s ready for second
(and no, I have no say whatsoever in what he
chooses to wear each day!)

The truest thing I’ve ever heard said about parenting is that the minutes go by slowly but the years go by quickly.  Just ask anyone who’s ever been home with a colicky baby or a fussy toddler. And just ask anyone who’s ever posed for a picture next to their proud graduate.

We have a bird’s nest on our front door. It sits atop a wreath that’s been hanging there since we moved in. The babies have just been born and now the parents are more vigilant than ever, swooping through and nearly attacking anyone who dares to set foot on our front porch.

I know the birds will quickly grow and fly away, allowing us to reclaim our porch. In fact, I stood in the backyard with a father of Braedan’s friend having that very conversation yesterday while we watched our big boys play on the swingset, mere hours after they’d finished their last day of kindergarten.

Now, I know we’re not empty nesters or anything, but it sure does go by fast, those little babies raising their beaks out of the nest waiting to be fed one day and flying off on their own the next. Suddenly, my first baby stands before me a reading, writing, six-year-old. And I know that as quickly as these past six years have gone by, the next six years will go by and then the six years after that.

He has had a great year, made much easier by the calm consistency of his teacher who provided a necessary sanctuary from the chaos that enveloped our lives. Braedan certainly struggled with Austin’s sickness, much more this time than the first, having a kindergartener’s heightened sense of injustice, but his school remained a place of security and comfort throughout it all.

And, my god, the stuff he’s learned! I knew he would learn to read (since “kindergarten is the new first grade”) but I am nonetheless amazed at his ability to pick up almost any book and decode almost any word in it. And his writing–that has been my favorite thing to witness. He brought home his Writer’s Workshop folder last week, complete with a one-page “story” written each Monday that perfectly captures the scope of his year. From raking leaves and trick-or-treating in the fall to skiing with Daddy and Grampy in the winter to shaving his head for his little brother (“That was a fun day!”) to the more recent entries that cover the front and back of a sheet with “And then . . .,” “And then . . .,” “And then . . .”

As much as Austin has wowed us all, time and again, with his ability to just keep rolling with it, so has Braedan. He is a happy, well-adjusted, rising first grader:

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.

For some unknown reason, I was unable to get holiday cards out in the mail this year, so here it is, our virtual greeting to all of you.

2009: what a year. It started with the Dietrich family vacation to Jamaica, where the boys enjoyed swimming in the ocean, swimming in the pool, and naked soccer playing. They did not, however, enjoy riding the ponies.

A few weeks later, Mark and I had the distinct honor of traveling to Washington D.C. to witness the inauguration of Barack Obama as our 44th president.

March and April stunned us with what we thought was a recurrence of Austin’s cancer. This earth-shaking event proved to be relatively easy and quick (relatively being the operative word there) and suddenly we were right back where we’d started.

As spring arrived, we began an unexpected house search, came very close to buying one that wasn’t right for us and then finally found The One.

Summer flew by with a quick trip to Cape Cod, a few weeks in Chautauqua and much work preparing our current house for its market debut.

Fall was filled with significant milestones as Braedan eagerly started kindergarten and Austin reluctantly started preschool. We finally took possession of the new house and began what continues to be an on-going renovation project. Austin’s health was questionable, uncertain, indeterminate . . . and carefully watched.

And, well, you know where that led us.

All in all, it was a year of drastic ups and downs: good health, bad health and in-between health; old houses, new houses and almost houses; lives beginning, most notably that of our niece Amira, lives ending and lives being lived to the fullest.

As it began, 2009 was marked, more than anything else, by an enormous sense of HOPE. 2010 will begin the same way.

Happiest of new years to us all,

Krissy & Mark, Braedan & Austin

And so, another year goes by.

Today was Austin’s third birthday. Of course, we can’t make it through this day without reflecting back over his birthdays past and how very far we’ve come in three short years.  We celebrated his first birthday while home on furlough, five days “off” sandwiched between 14-day and 15-day hospital stays.  That was the year when everything was still so uncertain; we were still in the thick of cancer, with no sense of what the next minute or day or year could bring. So on that day, Friday September 21, 2007, we had everyone wish for him at the exact moment of his birth. And at 11:48am, all over the country and maybe the world, friends and strangers were blowing out candles and sending wishes off into the universe, carrying hopes of birthdays to come on their wings.

Then last year, when he turned two, everything seemed normal, extraordinarily ordinary. We threw a small party in the yard with family and friends and as he blew out those candles, I thought he would last forever. I imagined him growing up, going to school, riding a bike, learning to read, having a girlfriend, graduating from high school, going off to college, getting a job, getting married, becoming a father.  I believed all of those things would happen, surely with some bumps, maybe not in the perfect order. But I really believed they would happen.

And then came March. And another tumor.

And suddenly, I felt like a fool. Like an ass. Like how could I have let myself be so naive, so hopeful, so trusting.  How could I have so thoroughly believed the worst was behind us when the worst seemed just about to begin? In those weeks, I wasn’t sure he’d make it to 3, let alone 30.

But today came. And, because life is once again back to normal, it was all about dinosaurs. He had a party at the park yesterday complete with a mom-made 3-dimensional triceratops cake.  Now before you go thinking I’m Robo-Mom (as Mark called me with affection late Saturday night as I pieced together this chocolate and lemon monstrosity), this cake was far from perfect. In fact, by the time the party began, the head had come loose from the body, the horns were toppling and we were all joking about dinosaurs becoming extinct. But Austin was beaming with pride as he announced, “Dat a cool cake, Mom.”

The skeleton

The skeleton

 

Coming together

Coming together

 

Almost ready

Almost ready

 

They clearly don't care that it's already falling apart

They clearly don't care that it's already falling apart

 

Last minute repairs (check out their faces!)

Last minute repairs (check out their faces!)

 

Braedan dressed them in matching outfits all on his own

Braedan dressed them in matching outfits all on his own

 

In his new Elmo pajamas

In his new Elmo pajamas

So I’m back in that place yet again, that place of believing so thoroughly in all he will do, see, be in his life. Of knowing he will go to kindergarten and learn to read, he’ll ride a bike and play (non-contact) sports, he’ll kiss a girl (or boy . . . whatever) and drive a car. There will be setbacks and maybe worse than setbacks. But we’ll make it. He’ll make it. Just look at him . . . .

Super Boy

Super Boy

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