You are currently browsing the monthly archive for June 2012.

Every once in a while, it’s nice to be reminded of all that is right in the world. We hear stories every day of death and destruction, fire and hatred and political wrangling. Incompetence and sickness, war and poverty. This is what glares from the headlines and blares from the news programs.

But there are bright spots that too often get overlooked. Of course, Thursday my faith in the inherent fairness of our system of government was “upheld.” But politics aside, here are two really great clips if you’re feeling down.  Many of you have seen the first on Facebook, where it made its rounds last week. It’s so worth reading through again though because it is filled with touching and surprising acts of humanity and kindness. My favorites — although it’s hard to choose — are the man in Melbourne jumping into the water to save that woman’s dog and the old Japanese men volunteering to work in the clean-up of the nuclear power plant. Oh wait, and the letter from the three-year-old girl to the grocery store (did you notice the age of the responder?) and the man giving away his shoes, and the  . . . Oh, just check it out yourself.

The second is a bit long, but I highly recommend watching it through to the end because the last minute is the best part.  Kids get a bum rap these days, for being selfish, hooked on technology, obsessed with wealth and fame, ignorant of the struggles of those who came before them. But this video shows young people coming together in a way that can only be described as beautiful.

0530-boy-cerebral-palsy-race.aspx

Take a few minutes. Let your faith in humanity be restored. If we look closely, we’ll see that there are acts of beauty and kindness all around us. Now go, and have a nice day.

OK, perhaps I didn’t make myself clear. I am not sending out individual invitations unless I know that you don’t read the blog (yes, there are still a few people in our lives who don’t). So, if you’re reading these words right now, then you’re not getting an invitation. For one thing, it would take too long. Plus I’d be afraid that I might miss someone. And the Paperless Post site I’m using isn’t free, unlike Evite. It’s only a few cents per emailed invitation, but still, I’d rather put that money into indulging you at the party itself.

But you are actually invited. If you’ve ever commented on a post or “liked” a status update, if you’ve delivered us a meal or hosted Braedan during a hospital stay. If your child shaved his head or if you donated on the heads of my children, if you walked beside us at the CureSearch Walk (which, no we didn’t miss this year; it’s been moved to September) . . . then you are invited. Even if you’ve done none of those things, but have followed along quietly and consistently over the years (or months), then you also are invited.  I know some of you are sitting there reading and saying, “Oh, well, she couldn’t mean me,” but I do!

I can see that several hundred of you read Tuesday’s post and that more than 100 of you clicked through to view the invitation so the fact that only eight of you have responded is going to hurt my feelings.  And we don’t want that . . . So, come on and celebrate with us!  It’s been brought to my attention that there’s no Decline option on the Paperless Post site (but do please check out my carefully chosen postmark on the envelope). Sort of strange, I know, but you can probably just use the Comments section for that. I want you all to come, but I don’t really want ALL of you to come. Our yard isn’t that big.

Well, my friends, it’s more than time to celebrate.  When Austin first finished cancer treatment way back in the winter of 2008, I remember thinking about having a big party until my mom and I sat down with a list of registered Carepage readers and realized we simply didn’t have enough room for all those people.  But now Mark and I have a huge yard with a huge porch and even more to celebrate (as that 2008 party would have obviously been a bit premature).

Austin is not keen on being the center of attention, so we’re wrapping many milestones into this one bash, and … on Saturday, July 28 we are hosting a great, big, long, loud and late party to celebrate all that is right in our lives: Mark is turning 40 in November (if you can count that as something that is “right” in our lives….), our 10th anniversary is in early August, our house projects are pretty much/almost/really close to done and, of course, last but far from least, Austin is two-years cancer-free.

Our fun and fabulous (and tree-friendly) invitation can be found here. Please know that even if you don’t receive an official invitation delivered to your email, you are indeed invited. Yes, all of you. Of course, I have no idea who or how many “all of you” are, but if you’ve ever gone to bed at night with fear and sadness in your heart after reading my updates or with relief and joy in your heart after reading my updates, then I’m talking to you. Leave your computer behind and come celebrate with us in person. But you must let me know that you’re coming! We really need a head count if we’re going to be even the slightest bit prepared. Of course, there are a few of you who may want to plan a surprise visit, but you better really be worth it. No fair “surprising” me with your presence if you live ten minutes away.

And note, Austin’s good health may be at the core of this party, but Austin himself will only be here until about 9pm and then he and Braedan will be shipped off somewhere quieter. In other words, call your babysitters, people, this is a grown-up party.

See you in a few weeks . . .

There were many times over the past five years when I was struck by the incredibly kind — and often completely random — outpouring of support we received from our community.  Moms I’d never been introduced to would offer me tearful hugs in the hallways of the preschool.  People I hadn’t seen in years would drop meals off at our house. Old friends my kids had never met would offer to babysit or take Braedan on an outing when we were in the hospital and I’d have to politely turn them down because no way was I shipping that boy off with anyone he didn’t know. People would tell me that they think of us every day and pray for us every night and cry for us, wish for us, hope for us. Sometimes, I couldn’t help but think, “Really? You do?”

But then tragedy strikes elsewhere and I totally get it. The shoe is on the other foot as I find myself thinking day and night about the woman who lost her husband completely unexpectedly a week ago. I’d known her a tiny bit when our oldest were babies and then I’d seen her at the grocery store every now and again. And then our kids were on the same baseball team this spring when, suddenly, she’s on my mind nonstop. A widow just my age. With three little kids. So I offer to pick up her boys and take them to baseball practice even though I barely knew their names a week ago. And I sign up to deliver a meal. And Mark asks me to run by her house to make sure her lawn doesn’t need mowing.

And then there’s another family we know, whose son is slowly dying after a brutal ten-year battle with cancer.  And I find myself sharing their story and getting choked up as I repeat over and over again how damn hard they’ve fought. How endlessly long and endlessly hard they’ve fought for all these years . . . and now there’s an end. So I obsessively check their Facebook pages for the latest news, glance down their street as I drive past like it will tell me something.  And I wonder — am I just being nosy? Is this rubbernecking at a car accident? But I feel such a strong need to know so I can … what? Drop off more food? Send a card?

I understand now. I understand how you all felt — both hopeless and hopeful, a little bit guilty for your curiosity, for taking such an intimate glimpse at another family’s suffering, and yet consumed by it. I know why you followed us, sometimes quietly, with such consistency, for so many years. I understand the cookies and the muffins and the casseroles and the coffee. I feel the drive to give that tearful hug. I get it. We all just want to do something. We want to somehow ease the paths of those in crisis. We wish that they could take that huge chunk of sadness they’re forced to bear and break it up into tiny, more manageable pieces. That they could pass off those pieces to their friends and neighbors and, yes, to mere acquaintances and probably even total strangers. We could all handle just one small piece of their sadness, that wouldn’t be too much.  We could just quietly hold on to it for them, to lighten their burden, and maybe trade a little piece of our own strength or joy or peace.

We can’t, of course, but we can want to. That wanting is worth something. It was worth something to me at least. And hopefully it’s worth something to them.

St. Baldrick’s season may seem like it’s over, but they’re not done raising money for pediatric cancer research.  And now instead of shaving heads, they’re climbing mountains.

In 2010, Patrick McCarrick launched a new initiative called Climb for 5, in which mountain climbers raise money by scaling the tallest peak on each continent in honor of the five St. Baldrick’s Ambassador Kids. So in September of this year, a group of seven climbers will head to Russia to climb Mt. Elbrus, Europe’s highest mountain at 18,500 feet.  I spoke with Patrick on the phone last week and he compared mountain climbing to cancer treatment, something I’ve done before myself, here after my run up Mount Cadillac.  Each leg of the climb will be dedicated to a different child and they’ll carry something special of Austin’s to represent him. Since he doesn’t have a lovey or any single object that perfectly captures his journey, he and I are going to make the most fabulous ever wishing star to send up the mountain.  (I offered to send Austin himself but they turned me down….)

You can learn more about Climb for 5 here or here. And you can still donate, either to the climbers in honor of Austin or to our very event. This year’s shavees and events can collect money through the end of this month. So far, St. Baldrick’s has raised more than $30.4 million dollars, the most ever, $36,000 of which came from our event. I’m so honored to have been part of the most successful season yet.

Nothing earth-shatteringly new, but here’s a link to an article I wrote for St. Baldrick’s on Austin’s recent scare.

I will accept submissions of possible new words for “really, super, extra relieved,” so get your creative caps on, my friends, and let’s hear it.  Merriam-Webster is waiting.

Mark said that it took him about ten days before the bad news about Austin really sunk in and he could fully grasp the possibility of what lay ahead. Now it’s taken him another ten days for the good news about Austin to truly sink in so he can fully grasp the possibilities that lie ahead.

It is a fascinating process, how your mind can so quickly and completely adapt from one reality to the next. I was so there — in that worst place — so quickly, already figuring out the weekly schedule for dialysis, planning the activities we’d engage in for those four hour stretches. My mom was too — she had a mental list of books they’d read together and games they’d play. Mark and I discussed getting a Lego table that could fit nicely on Austin’s lap so he could contentedly build while his blood was being removed and cleaned by the machine whirring next to him. It’s a classic example of Whoosh … one minute your life is normal, the next it isn’t. And the next, it is again.

We’re still adjusting mentally. Still feeling a jolt of relief and giddiness when we remember some summer plan that we’d canceled in our minds. I feel like we’ve come back from the dead. Like a scene from a movie or book when a beloved character dies and you’re left there thinking, “No! This can’t be . . .” and then lo and behold, the heart monitor jerks back to life after flatlining or the hero rushes in with the magic serum or the character claws their way out of the shallow grave and voila! All is better. And you, as reader or viewer, are both thrilled and also disbelieving — “Oh, come on! As if that could actually happen”

But it actually happened.

There were a few reasons the possibility of cancer seemed so bad this time. I think, for one, it was simply that we’d gotten so close to our goal, just inches away from the finish line, almost touching the two-year trophy before it was ripped from our hands. It somehow seems like it might have been easier if it had happened at the 18-month or 21-month marks, like not such a tease.

There was also this terrible reality hovering in the back of our minds, which neither of us wanted to voice aloud, that we were somehow responsible. That our decision two years ago to keep his kidney was wrong and now we had to do it all again. Mark and I both said back in 2010 that we would take whatever consequences came our way. And of course, we knew in our heads what those consequences were. But that doesn’t make it any easier when they actually occur. I couldn’t help but think that we’d be almost done by now if we had taken the kidney. His two years of dialysis would be coming to an end and we’d be spending this summer dealing with his transplant — lots of time in the hospital, absurd amounts of daily medications, worry and more worry. But we’d still feel like we’d accomplished something. So I was left wondering if it would be worse for him to have dialysis now that he was older, now that he’d be missing so much “real” school (I would have had to pick him up at 11:30 three days a week). With all the new friends he’d be meeting for the first time, he’d be known as the sick kid, the one who never feels well, who misses all the fun stuff. How long would that identity have stuck with him before he could replace that image in the minds of his peers with the strong, vibrant child we all know?

And then, of course, the big one: the intense and overwhelming fear that this was it. I mean, how many times can you beat the same cancer? We’d done radiation and chemo and surgeries and it just kept coming back. How smart is it? How powerful? Back in December 2009, when we were trying to determine a plan of action to treat that relapse, Mark and I asked our oncologist what chemo drugs would be available in the future if the three we used for those six months didn’t work. (You don’t give the same drugs for more than one protocol; Austin had three drugs during his first eight months of chemo and then three completely different drugs during his last six months of chemo.) The response? “Palliative chemo.” Uuuuummmmm, okay, I know what that means: “Cure” is no longer the goal, palliative chemo is simply about reliving symptoms and prolonging life . . . by a little bit. A few extra months. So, cancer again would not have been good. To say the least.

But now I’m dwelling and I don’t need to. We’ve come back from the brink, no longer dangling over the edge of the cliff. I feel a thorough and deep sense of calm, like nothing really matters beyond my two healthy children bouncing on the trampoline and my pretty awesome husband mowing the lawn.

I must be the luckiest.

Well, I made it to June. Not quite sure how, but I did.

Funny, when I wrote that May Madness post on April 30, I had no idea the degree of madness that would ensue. But, here we are, on a cold and rainy June 1. Aaaaaahhhhhhh.

The Young Authors Conference at Fairfax went very well. It was an extraordinary amount of work that required an army of volunteers, to whom I am eternally grateful. But we typed, printed and “published” more than 350 books, 285 of which were printed, tediously, double-sided, on my home computer. The kids produced stories that were funny, clever, creative, original, sometimes sad, a little bit crazy and, on occasion, deeply profound.  As one of my typing volunteers commented, “This makes me wish I knew these kids better. There is a lot going on in their minds!”  Indeed, there is.

Yesterday we had a culminating assembly with a local author, to which the students proudly brought their completed books.

A few brave kids got up to read excerpts including this familiar-looking guy, whose teacher challenged him to use non-human characters so his are mitts, bats and one very unhappy baseball:

This 4th grade girl wrote a beautifully moving, fictionalized tribute to her teacher who passed away very unexpectedly in the winter:

And this 1st grader’s pirate story had a battle “that lasted eight hours, which is a reasonable amount of time for a battle:”

I had the chance to get to know a lot of children, the youngest of whom began calling me “Young Author,” as in, “Look, there’s Young Author” on my daily trips through the building. And many of the kids were genuinely excited about the project and seemed eager to write more stories (although one of my favorite — and most honest — About the Author paragraphs said, “This is so-and-so’s first book and he doesn’t plan to write any more”!).

Ultimately I’m glad I did it and very very glad it’s over. There were several times, after late nights of typing up page after page of unpunctuated dialogue, when I said to Mark, “I don’t see how on earth I can possibly get this done. But I am going to get it done.”  And I did. With a ton of help, of course. Thank you to all, especially Amy and Cynthia of Lake Erie Ink, who partnered with me in this madness and surely, more than once, wondered what they’d gotten themselves into.

Now, I will host the Volunteer Appreciation Breakfast at school on Tuesday and help out with the 2nd grade picnic that afternoon and then, . . . then it’s summertime!

June 2012
M T W T F S S
« May   Jul »
 123
45678910
11121314151617
18192021222324
252627282930  

Archives

June 2012
M T W T F S S
« May   Jul »
 123
45678910
11121314151617
18192021222324
252627282930