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You are going to be hearing a lot from me in the next few weeks. Fairfax Elementary School has entered the Big Lots Lots2Give video competition in the hopes of winning $20,000 for an adaptive play structure that can be used by our special education students and our regular education students side by side. Unfortunately, the quality of our video and the conviction of our plea are not worth much as this is simply a popularity contest. So I need you to VOTE VOTE VOTE.

Every single day between now and July 7, you can vote up to three times each day from every single device you own. Desktops, laptops, smartphones, iPads and iPods, tablets, anything you own that connects to the Internet can earn us three votes. Just follow this link, watch the video (or not, but it’s nicely done and Braedan is in a light blue shirt playing the recorder around the 15th second), and enter the captcha code to vote.  And then do it all again on your next device. And then do it all again the next day. And then share it with everyone you know. Over and over and over.

As a sort of funny aside, I was asked to write the “500-word essay” to accompany our school’s entry, which I’ve copied below. Unfortunately, when we went to submit it, we discovered that the fine print actually said a 500-CHARACTER essay.  Including spaces. Hmmm. Well now, that calls for a slightly different tone. So we quickly edited, with vast swipes of the delete button and you can see the results by following this link . . . three times a day, from every device you own, over and over and over again. You get the picture.

And thank you.

Learn Together, Play Together

Fairfax Elementary School in Cleveland Heights prides itself on serving all kinds of students. We educate, nurture and inspire children from a broad range of backgrounds, across many races, religions and socio-economic classes. These children work and play side-by-side, learning, reading, singing and growing as equals and peers.

Our building is also home to students with a wide range of physical and developmental delays and disabilities, including cerebral palsy, lack of mobility, and coordination and balance issues.

Our building staff works hard to ensure that able-bodied and disabled students have authentic opportunities to interact during classtime when appropriate, in their non-academic specials, such as music and art, as well as during lunch and in extra-curricular activities. All our children learn and benefit from such meaningful integration with one another. There is great beauty in watching a student confined to a wheelchair clapping alongside her classmates as they perform in their spring musical concert. Or in watching the able-bodied students in the after-school tumbling class break into spontaneous applause when their developmentally delayed peer executes a less than perfect somersault.

But there is one place in our building where these groups of students cannot safely interact and that is on our school playground. With modifications and assistance, some of our exceptional students are able to use the traditional playground equipment we currently have but it would be neither safe nor practical for them to use it simultaneously with the rest of the school population. This forced segregation renders that most-beloved time of the school day – recess—as a separate and unequal activity.

The Fairfax School PTA has worked in conjunction with the special education teachers and a team of dedicated fifth graders to identify new playground equipment specifically designed for integrated use by able-bodied and disabled students. Installing such equipment would dramatically alter the course of every day for our exceptional students: they would suddenly be welcome to share in the joy of recess with their peers, laughing, spinning, climbing and sliding side-by-side. They would experience the pride and dignity of being able to use their own playground with minimal assistance from aides, enjoying the same feelings of mastery and independence that their fellow students enjoy.

Furthermore, because our playground sits along a heavily traveled road, a new handicapped-accessible playground would publicly and visibly proclaim our school’s commitment to inclusion. And as a vibrant neighborhood gathering space during non-school hours, the new equipment could be available to any in the community who should need it.

We believe that every student at Fairfax School should have equal access to all of the building’s amenities, no matter what kind of body they were born with. The joy of play should be universal. But we simply cannot afford to do this on our own. Big Lots Lots2Give program can help.

Please vote.

Since the outpouring of potential volunteers has been — ahem– rather slim, let me calm your fears.  Neither the Treasurers’ nor the Registrar’s jobs will take much of your time prior to the actual event.  I will do all of the necessary communicating with shavees in the days and weeks leading up to the event, making sure they’ve completed the proper paperwork, encouraging their fundraising efforts and so on. You would just need to study your list of responsibilities beforehand and then be prepared to work one long and tough day.  The Registrar will basically be sitting at a welcome table signing people in, making sure that everyone under 18 has a parental consent form signed and an official shavee number assigned to them and the like.  The Treasurers will need to be able to quickly separate out the various donations people bring with them the day of the event (although, like I said, most donations are made ahead of time online). St. Baldrick’s provides very specific instructions and forms and envelopes for each type of donation (cash, check, general donations, donations to teams or individuals, etc) and each thing needs to be properly identified and filed. I am happy to take on the bulk of the responsibilities before and after the event, but know that on the day of, I’ll need to be emceeing and overseeing the entire enterprise.  Oh, and (a bit of extra pressure now), the Foundation won’t mail out our promotional materials (and just wait until you see who’s featured on them!) until we have at least one Treasurer registered.

And now, for the fun stuff: For the last two years, Braedan and Mark have shaved as members of Team Austin.  Well, we’re having a Beatles moment and this year they’re splitting up.  Braedan would like to form his own team of friends and classmates, so if you count Braedan among your pals, please consider registering for Team Braedan. And Austin is also hoping to convince many of his friends and classmates to shave alongside him as members of the latest incarnation of Team Austin.  Mark will be shaving the following week at AJ Rocco’s for Team Gallagher and already has several members of the 2010 team, including one woman, considering signing up again.  I am sure we can encourage a bit of friendly (I hope!) familial competition around this one, so pick your favorite Gallagher and hop to it! I promise, your hair will grow back . . . .

You know how once you start thinking hard about something, it seems to pop up everywhere?

Well, this kindergarten things seems to be popping up everywhere. Yesterday, I read this article from a recent Newsweek, which focuses on parents who hold their kids back from kindergarten (often upon the recommendation of the private schools to which they’re applying) in order to give them an advantage over their classmates, particularly when it comes to standardized test scores.  Reading stories like that make me absolutely want to send Austin “early” (on time) because I find it so frustrating that parents constantly push their kids to be the best best best.

Then today I read this (worth your time, I promise), not specifically about kindergarten but just about how we’ve turned childhood into some kind of race, a massive competition between the super-successful and those lagging behind, and about how we should return to a time when kids were allowed to be kids for as long as possible. It made me second guess sending him for a completely new reason, one that only a few people have mentioned thus far. Everyone keeps talking about how holding him back will give him advantages later — in his schooling, in his  social life, in his future. And so much of it smacks of having advantages over others — being the best, the brightest, the oldest.

But this little essay made me think about the advantage of just letting him be a kid, right now, less stress, less structure, fewer expectations, for an entire extra year. Like a freebie. Here, little Austin, you’ve had to do lots of grown-up things already (way too many way too grown-up things; you should hear my four-year-old talk about “bwood pwessure cuffs”), so here, take a break. Stay in preschool, build fantastic vehicles out of popsicle sticks, run on the playground, sing songs and do kiddie yoga, don’t fret your pretty little head about phonemic awareness and SmartBoards and Mandarin Chinese.

I’m not so concerned about my kids having advantages over other kids (although admittedly they do — parents who’ve read to them incessantly since birth being chief among them). But I am certainly all about them enjoying the advantages of well-rounded, old-fashioned childhood — freedom and exploration and creativity and self-expression.

Hmmmm, back to the drawing board.

I know I implied I’d give you a treehouse update but the entire thing is under wraps right now (literally!) so I figured I’d wait a few more days for the big reveal. Just know that it is pretty darn spectacular.

The other exciting thing that’s happened in the past week is that as we were driving to the airport last Friday I received a email from Writer’s Digest informing me that an essay I submitted in their annual writing competition had placed. Not like first place or anything, but 60th in the memoir category. Now I know 60th doesn’t sound like much but last year there were 14,000 entrants so placing at all is not too shabby.

Here it is:


Did I really just see that? It couldn’t have been. It couldn’t have been that word. Not today. Take a deep breath, keep driving, eyes on the road. Maybe it was just my imagination. I am tired after all.

The next day, I look straight ahead, trying to keep my eyes from wandering to the cars parked alongside the road. But I can’t help it, I’m almost down the hill when I peek to the right. And it’s there, clear as day: DEADBOY. In bold capital letters on somebody’s license plate. Who would do that? Don’t they know they live right by a hospital? Don’t they know somebody’s one-year-old son has a mysterious cancer, a tumor that’s grown to the size of a small watermelon, a medal-winning butternut squash bursting out of his kidney?? Don’t they know that?

I don’t mention it to anyone. Not to my husband, not to my mother. Not as I pour my heart out on my month-old cancer blog, describing each moment of fear and confusion and relief, each setback followed by small victory followed by setback. I don’t hold much back. I share it all. But I never mention the license plate, I never ever say that word aloud.

And so it takes on enormous power, it grows in my mind to something of a talisman, an omen of how the day is going to turn out . . . or how this whole journey – and the rest of our lives – is going to turn out. If it’s there, my heart beats a little faster and I drive a little quicker so I can relieve my husband and get my boy back in my arms. If it’s not there, I breathe a little deeper, my shoulders relax and I panic less when I can’t find a spot in the damn parking garage.

What else am I to use as my guidepost? What else do I have to believe in? Certainly not God, since I’m not about to start believing now, just because I have a kid with cancer. No matter how badly I may want someone or something to pray to, hypocrisy is worse in my book. Hypocrisy is always worse. My lack of belief is a belief system too, after all.

And I don’t have chemo to believe in, not anymore. That magical poison we placed so much faith in that failed us so thoroughly. I mean, whose tumors grow . . . with chemo? That’s not how it’s supposed to work. Chemo shrinks tumors, god dammit, how can his body not know that? So there goes my steadfast belief in science and medicine, shaken to the core. And doctors . . .well, I believe in our doctors but everyone makes mistakes. They’re only human, I’m wise enough and pragmatic enough to see that. They have lives and personal dramas and professional dilemmas to consume them.

So what do I have left to believe in? A license plate, apparently. I quietly place my faith in that damn license plate.

And for eight weeks, I am haunted and taunted by that single word. From the day we learn of the inexplicable and shocking growth of his tumor until the massive eight-hour surgery that removes his destroyed right kidney through the miserable recovery period when he’s forbidden to consume anything by mouth – no food, no water, no breastmilk — for ten days. From the long wait for pathology results until the next CT scan reveals growing tumors on the left side as well until the next surgery, quickly aborted because an infection is growing inside his surgical site. Through the surprisingly relaxing week-long stay during which he is pumped full of IV antibiotics trying to clear up his MRSA (isn’t that what I just read about in the paper? Doesn’t that kill people?) and his c-diff (it would be another year before I’d read about that one in the paper which, yes, also kills people) and into the next eight-hour long surgery where they remove four smaller tumors and forty percent of his left kidney. And then through the torturously long days and nights in the PICU as he recovers, a sweet one-year-old boy with tubes in his nose, hands, feet, chest, with an eight-inch scar across his belly, with so few answers as to why, how, what next. Through all of that, I am haunted and taunted by a single word boldly displayed on someone’s license plate. A word I can not bring myself to repeat, that my rational mind insists is just a word, some sick joke on some sick person’s part, nothing to do with me and my child.

But my non-rational mind thinks otherwise. And when you spend your nights standing up holding your baby in your arms, your non-rational mind tends to hold sway.  It’s so in my face, so very blatant, mocking my fear. If it said something more benign or vague like WATCH OUT or BAD LUCK, I still might feel a tinge of worry. If it said DEAD GIRL or DEAD MAN, I still might have looked twice and shaken my head and thought about it later as I tried to sleep against the green glow of the IV pole. But no, this is not vague or benign. This is serious. As clear as day, it says the one thing I can not bear, the single outcome I refuse to accept.


And then, incredibly (some would say miraculously) everything calms down. We spend more nights at home in our own beds than we do at the hospital. Austin crawls and plays and laughs and even grows. And by the end of October, a mere three months after the storm that is pediatric cancer blew into our lives, he has another CT scan. And it reveals . . . nothing. No tumors, no growths, no visible signs of cancer. Nothing suspicious or scary or deadly inside the small body of my beloved boy.

We continue to drive down that hill for months to come, once or twice a week for chemo or bloodwork or scans. My eyes are still open, still darting back and forth between the road ahead of me and the cars parked alongside it. I’m always ready, on edge, but I’m afraid to see it, so I don’t look carefully. I’m not actually searching. So a few weeks pass before I really notice that it’s gone, before it sinks in. Could it be? Suddenly I’m emboldened, slowing down, scanning driveways, really searching. And it’s not there. It’s gone.


It takes another six months before I mention it to anyone. And when I do, I mention it big. I describe it on my blog to the hundreds of people who’ve been biting their nails and crossing their fingers and crying and praying and cheering for Austin since this story began. And then I wait. One day, then two, thinking for sure someone else will step forward and say they saw it too. Maybe my mom, who walked down that hill almost every day we were in the hospital to take a shift so I could go for a run, shower at home, see my other boy and remind him that he was still loved. Surely she must have seen it but been understandably reluctant to bring it up. Surely someone must have seen it.

But no one has. It never caught anyone else’s eye. And now I have something new to worry about (great, just what I need): Am I crazy?  Was I actually losing my mind?  Could I have been that stressed, that exhausted, that my imagination invented it, made it up out of the clear blue sky? I’ve always been an extremely rational person, a normal person with a normal mind that functions in normal and predictable ways. I don’t make things up, child with cancer or not. I don’t hallucinate, for crying out loud.

And then, less than a week later, my friend’s mother posts a comment. She and her husband saw the car. They were driving on the freeway in a snowstorm, creeping along at well below the speed limit, on the opposite side of the city from where they live, when they pulled up behind it. It was real.

Ah, phew, well thank god for that. It exists and I’m not crazy. But relief passes into anger. Who would do that? Why would they choose that word? And then the pieces of the puzzle start falling into place. Another friend tells me there was a punk rock band in the 70s named The Deadboys who originated in, you guessed it, Cleveland.  Of course.

If only I’d told someone sooner, if I had showed up at the hospital after the very first sighting and said, “Oh my god, guys, you will not believe what I just saw.” It would have diffused all the power. It would have made it just another silly thing to have to bear, a minor distraction. But, who knows, I probably walked into some medical chaos, a new storm swirling, and didn’t have a chance to tell my story. And then one day passed and then another and its importance grew, fed by silence and fear, way out of proportion to what it really was. A vanity plate. Some old rocker pining for the past, wanting to relive his glory days. Come on.

So I did what any typical twenty-first century girl would do and got back online for another search. I had already, months prior, typed “Deadboy” (singular) coupled with “Ohio license plate” into my search engine. You know what I got? An article about how the Columbus Police Department was trying to find the identity of the dead boy using the license plate number of the submerged car in which he was found at the bottom of some river.  Armed with new knowledge (Deadboys plural), new answers appeared. Yes, a 70s era punk band who found their fame in Cleveland before heading off to New York. This went out for a page or two of Google-generated responses, old albums on eBay and concert reviews from the Agora, and then, something interesting, something new: One of the band members was struck by a car while walking in Paris in the 80s. And killed. Hence the singular dead boy. Well, now. That changes things.

This was not some aging rocker trying to recapture his youth. And it was not some cruel sociopath who got his jollys torturing the mothers of sick children. This was a tribute to a fallen friend. Sad, yes, but also positive in a strange way, done out of love, I suppose.


I look for it still, we’re not done at that hospital yet even though years have passed. It’s never returned. I have never seen it again.

But it was there. In my very worst days, in my most terrifying moments, that word was there, reaching out through the fog, taunting me from the side of the road right when I thought my child might die.

And then he got better.

And it was gone.

April 2020


April 2020