You are currently browsing the monthly archive for April 2012.

And so it begins. Tomorrow is the Kick Off for the Young Authors Conference at Fairfax.  I have an author coming in from Columbus who will do three repeat assemblies in the morning, one for kindergarten and 1st graders, one for 2nd and 3rd and another for 4th and 5th.  This will include her interactive game “The Inside Track to Creative Writing.” Then eight lucky 4th and 5th graders will have lunch with her (and moi) and another 24 will attend a one-hour writing workshop int he afternoon.

I will then spend most of the month in the building, working with individual children on their stories or teaching mini-lessons on writing. I will also be coordinating an army of volunteers who will be visiting the classrooms for several weeks. By the end of the month, we will have 392 typed, illustrated and bound books.

And then in my spare time, I am co-chairing a fabulous event for Family Connections on May 12. Every single one of you is invited and strongly encouraged to attend. It’s an adult carnival (not as racy as that sounds though, I promise … or I’m sorry) with, among other things, a Wine Pull Ring Toss, Hula Hoop Contest and juggling/fire-eating act.  Click here for tickets.

And then on May 21, we’re hosting a fundraiser for Cullen Sweeney, the Democratic judicial candidate for Court of Common Pleas, who runs in the same legal circles as Mark. You’re all invited to that too — with your children.

And, this one is exciting, I will be a guest blogger on Mother’s Day on Melinda Roberts’ The Mommy Blog, an author and one of the original “Mommy Bloggers” (she’s been around since 2002 — I didn’t even know what blogging was then!) and the recipient of all sorts of impressive media attention and awards.

And I was just asked to be the speaker at a Circle of Friends event to benefit Rainbow on May 25.

And then there’s baseball practice twice a week and eventually games, end-of-the-year picnics, PTA meetings, art shows and teacher appreciation brunches calling for homemade muffins.

And, of course, we must throw in this Thursday’s Big Scans.

So, if you see me on May 31 and I’m still standing and speaking in complete sentences, consider it a mission accomplished. And know that in June, I’m doing a whole lotta NOTHIN’.

In the madness that is springtime (more on that later), I missed two significant anniversaries last week. One was Tuesday, the official date to mark two-years-since-the-end-of-treatment. As you may (or may not) remember, we didn’t know that that day was Austin’s last chemo. We simply finished our three-day hospital stay and went on home, thinking we’d be back again in a few weeks. But his kidney was failing and we spent weeks going back and forth (that you should remember) before ultimately deciding to halt all chemo and trust that what we’d done was enough. And so far, it has been. Or so we’ll see on Thursday.

The other anniversary was last Saturday, 26 years since I was diagnosed with diabetes. Two-thirds of my entire life. I noticed recently on Facebook that someone had received their 25-year medal from the American Diabetes Association and I felt sort of discouraged. Not that it’s not an accomplishment to live twenty-five good years with this disease, but I sure hope they make a 75-year medal because that’s what I’m planning on needing.

My mom and I were having a conversation with some people a few weeks ago about the role of worrying in parenthood (something I’m not a huge fan of, despite its apparent inevitability). She said that when I was diagnosed, she stopped worrying about me. Not entirely, of course. She’s always kept on worrying about me, either about my diabetes and how it would affect my longterm health or about all the other aspects of mothering a teenage girl. But I thought that was interesting and asked, “Why? Because you felt like the worst thing had already happened?” (which is how I often feel about worrying — or not worrying — about Austin). And she said, “No, not yet. But that the worst thing could happen and that I might as well just let you be happy. That you could be blind at 35 or never be able to have children or lose your legs or die young.”

The worst thing could happen to any of our kids — any one of them could get sick or have a terrible accident, no matter what we do to protect them and certainly no matter how hard we worry. So while we should still make them eat their vegetables and insist they do their homework, we should also relax a bit and let them be happy.  Because you just never know. You know?



I certainly did not mean to insinuate that my child is not being exposed to literature in his current schooling. He absolutely is, and to a lot of it. His teacher has read them fabulous books, many of long-standing renown. She often (and wisely) reads the first in a series, without continuing on, which piques their interest and then allows the children to pursue the rest of the books on their own. That’s how Braedan was turned on to the Little House books, which I had never ever read until this year, and now with the Narnia books, which again I’d only ever read The Lion, The Witch and The Wardrobe. Now, Braedan is reading them all on his own, plus I’m following along by reading them aloud at night.

Braedan has also had that wonderful experience of choosing a spot in the room, even under the desk, to enjoy a carefully chosen book. He has done this quite a lot in his English language arts class this year and it has fostered his love of reading in a way I had only dreamed possible a year ago. He absolutely totally loves reading and allows himself to get fully immersed in a story. He said recently that he finds it hard to go twenty-four hours without his book, even (he noted with some amazement) on the weekend, when reading is not so strictly enforced. He — and we together — have gotten to know the characters in some of these books so that we’ll refer to them in completely unrelated circumstances: “Wow, that reminded me of the way Pa always says….” and “I think if Digory were here, he’d ….”

Unfortunately, the reason Braedan has had such wonderful and free exposure to literature is because he’s in the highest reading class. (Of course, no one ever says these things aloud, but it’s true nonetheless…) I’ve seen, both as a teacher and now as a parent, that the lowest performing students (and those, one might argue, who most need exposure to high quality books) are the ones forced to do tedious and repetitive remedial work with little or no literary value. And that, in my mind, is unacceptable. Meaningful learning takes a long time and can be hard to measure, but it is still immensely important.

When I was teaching 6th grade language arts in Cleveland Municipal, I used to allow my students time to write, without specific guidelines, in their journals. I had created a list of possible topics for them to write about, unless they had their own pending issue. The list was stapled in the front cover of their notebooks and they could freely choose from among the nearly 50 topics.  Everything from “Do you think it’s better to be an adult or a child? Explain” to “If you could change one thing about your home life/school/neighborhood/world, what would it be?” Students had to truly think and then had to express their thoughts and opinions in writing in an effective and coherent manner.

The journal entries weren’t graded (gasp! today they’d have to come with a 4-point rubric) but I did indeed read them and often responded in writing right in the notebooks. It provided incredible insight into my students’ lives and minds and built a level of trust between us that served me well. But one day I sat in a meeting with some district administrators where we were discussing the various ways to teach reading and writing, and the woman in charge asked who used journal writing in their classrooms.  I proudly raised my hand (thinking, my god, who doesn’t?) and was completely shot down. She berated me and my methods because there was no measurable data generated from them and because they failed to correlate with any specific tested objective. Ummm, how about to think? To have ideas and opinions and actually express them?

The very students who most need opportunities to connect, either with literature or through writing, are the very ones whose educational experiences are being made narrower and narrower until the whole of what they “know” can be expressed by filling in a bubble.

And that, in my mind, is shameful.

Students across Ohio are taking their OAAs today. The Ohio Achievement Assessments. You know, the ones that “matter.”

My boys are still too young for these tests but one year from now, Braedan will be subjected to a special kind of pressure and strain the likes of which he’s never experienced. Not that he will struggle on any of the tests; he is an exemplary student and should pass them all with flying colors. But it will be impossible for him to overlook the extraordinary importance placed on these few days of testing by all around him.

I’m not blaming his particular teachers nor his particular school nor even his school district. But I am blaming society at large and the current system of assigning value to entire schools and districts based on the results of a few standardized tests. How can you possibly determine the overall quality of an individual or collective educational experience using the results of three days of tests? How can you capture the creative process or the ability to discover, try, make mistakes and try again? How can you capture the grand social experiment that exists in our local public schools, comprised as they are of children from dramatically different socio-economic, cultural and racial backgrounds? How can you measure the love teachers demonstrate for their students by filling in bubbles?

I was dismayed to read this article in the New York Times on Sunday about the lack of exposure to literature in English classes. What would my middle school education have been like without acting out Helena and Hermia from A Mid-Summer Night’s Dream? Or without the intense and timeless lessons taught by To Kill A Mockingbird? What insight would we be lacking about the human experience and human suffering if we hadn’t studied Greek Mythology or read Of Mice and Men? Or even those short stories taught by Mr Hirsh in 7th grade English like The Necklace and The Lottery (that one haunts me to this day).

Or what about the simple joy of finding a place to curl up on the floor (the freedom of lying under a desk instead of sitting at one!) to get lost in a novel of your own choosing. Or listening to your 3rd grade teacher read Charlotte’s Web aloud and witnessing that stunning moment at the end when her voice chokes up.

What about building three-dimensional replicas of historical times and events? I remember doing this in 4th grade for our Native American project. And again in 6th when we studied feudalism in Europe. (I do not, by the way, remember a single one of the many worksheets I completed in school.) Don’t even get me started on science experiments and hands-on math instruction.

None of those things can be tested using multiple choice or scan-tron sheets. Enough is enough is enough. If you agree with me, sign this national resolution against high-stakes testing. And then go get lost in a great book.



I just spent an hour filling out the paperwork to register Austin for kindergarten, which I will do on Tuesday (finally). Yup, an hour, or mighty close to it. Part of that was due to the fact that they want so many mailed bills as proof of residence and I do most of my bill-paying online. But part of it, of course, was the darned medical history.

The twelve-zillionth question on the green sheet (not to be confused with the blue sheet, the purple sheet or the white sheet) asked, “Has your child ever had any operations or serious illnesses?” After the Yes/No boxes, there was a line with the heading “Explain.” The line was 6 1/2 inches long. Oh, sure, let me just use my microscopic handwriting and explain my child’s three-and-a-half year serious illness in 6 1/2 inches.

So I neatly wrote “Please see attached,” and then proceeded to type up a 370-word addendum.

I’m used to writing and telling Austin’s story, but I’m not used to doing it in a completely dry, emotionless manner. Which is what I did on the addendum (which is why it was *only* 370 words.) I simply started at the beginning with diagnosis, stated each chemo drug and surgery date, each recurrence and radiation treatment, the high blood pressure and the daily meds, the enlarged heart and the old VSD.  No adjectives, no editorializing. And, god, it made me sad. I thought, “Who is this poor child? He sounds downright miserable, like his life’s been nothing but pain and misery.” I wanted to add a sentence or two at the end, like, “But he’s a perfectly regular kid!” but I realized it was irrelevant.  I’ll do that for his actual teachers, who know him already as a perfectly regular kid. This sheet will  sit in some dry, emotionless folder in a file cabinet at the Board of Ed and won’t actually mean anything to anyone anyway.

Because that sheet and those 370 medical words do not come close to representing my child.

Here’s a little more “feel-good magic” for you, this time closer to home.

Austin had an appointment with his nephrologist last week and that little kidney is holding steady. His creatinine was .75, one of his lowest measures yet. Well, not “yet” like forever, but at least since the kidney failure scare of March and April 2010. All other numbers have held steady, which means that, while still officially in Stage 3 renal failure, this child’s half-kidney is still kickin’.

Which effectively removes one of our life’s greatest fears: years of kidney dialysis, being hooked to a machine every other day for four hour stretches, all in a windowless room. Nope, that’s not likely to ever ever happen — ever — because my child’s two-year scans are scheduled for May 3.

That’s right. Two weeks from now, Austin will have an abdominal ultrasound and a chest CT that could and should mark him two-years cancer-free. Two years cancer-free. TWO YEARS CANCER-FREE. Something we’ve been waiting for for nearly five years.

I, more than anyone, should know not to count my chickens before the hatch, but really, . . . we have no reason not to expect that these scans will be as clear as the others have been for the past twenty-three months.

And, of course, I’m also well aware that clear scans that day guarantee nothing. They certainly don’t mean that new cancer couldn’t start growing the next day. Or that old cancer couldn’t return the day after that.

But — and it’s a big ol’ but — the odds are enormously in our favor once we make it past the two-year mark. Enormously. The chances of his Wilms tumor ever returning will be very very slim once we’ve hit that milestone. And, as important in our minds right now, if his kidney should fail he’d finally be eligible for transplant.

Seventeen days. And we’ll finally get to pop open that fancy bottle of champagne my dad’s been saving for us for years. Seventeen days.

How’s this for a little feel-good magic?

Caine’s Arcade

Is that not the coolest thing ever?  My boys are wowed … and inspired! I’m sending them out to the backyard with some boxes and duct tape tomorrow. And I hope hundreds of thousands of other parents are too.

I guess we’ll have to add that cardboard arcade in east L.A. to our list of Must-Visit places with the kids.  Along with Breadan’s current obsession, Laura Ingalls Wilder’s home and museum in Mansfield, Missouri. (What can I say? He’s well-rounded.)

On to the next big thing. You may remember that back in the fall, I was wishing I could bring a Young Authors Conference back to the Heights? Well, I can. And I am.

It’ll be on a small scale, not a major district-wide event, but the entire student body at Fairfax School will spend the month of May creating, writing, revising, illustrating and binding their own individual works of fiction. I’ve settled on Journeys as a theme because it’s broad enough that the kids will have a huge range of topics to choose from and yet concrete enough for them to have a good jumping-off point. They could write a completely fantastical tale of a journey to another world, the moon, the bottom of the sea … or could write a realistic story about a typical family vacation or even a field trip. If they’re advanced enough, they could even use the theme metaphorically to write about a journey through something, like childhood or divorce. The fifth grade classes will be taking all they’ve learned about early American history in social studies to write journeys back to Colonial or Revolutionary America, a la The Magic Treehouse books, and an excellent example of cross-curricular teaching and learning.

I’ll give you all the tiny details if you’re interested but, really, this post is a plea for help. I do have a good team of helpers, especially Amy and Cynthia from Lake Erie Ink who, along with me, have each taken two grade levels to work with throughout the process.  But, of course, there are many other ways to get involved, both large and small. I’ll start with the small: The students will be creating their book covers in Art class the old-school way, using wallpaper samples bound over poster board.  If you have access to any old wallpaper, especially in designs that might appeal to children aged 5 through 11, I’ll be happy to take it off your hands.  I’ve been calling around to the local hardware stores but have only gotten a few discontinued books (one of all brown stripes — clearly, why it was discontinued!). I can come to your house and pick stuff up or you can drop them here, so long as I have it all by April 27.

I also need volunteers to help type the student work. The kids will spend several weeks going through the steps of the writing process, brainstorming, drafting, editing, revising, and so on, but, except for some fourth and fifth graders, few are adept enough at typing to do it themselves without an extraordinary time commitment. So I will collect all the final drafts from teachers by Monday, May 21 and that evening, you are cordially invited to a Typing Party at Lake Erie Ink. I know, we’re wild and crazy gals, huh? Let me know if you’re tempted … or if you’re willing to take a few manuscripts home to type on your own time.

If you’re able and willing to work directly with students, I have a wonderful opportunity for you too. During the Revise & Edit stage (Monday, May 14 through Friday, May 18), students will work in pairs to read and critique one another’s drafts. I am coordinating volunteers to go into the classrooms and oversee peer conferences, working with two students at a time as they offer constructive criticism to their partner. I will provide written tips and instructions, as well as a brief training on the process, if you could give an hour (or more) in either the morning or afternoon that week.

So, if your days are long and empty or you’re feeling particularly unfulfilled and have a strong desire to make a difference in the life of a child…, you know where to find me!

There are seven kids in my backyard right now. Four boys and three girls, ranging in age from 4 to 10. Most of them just appeared, by biking around the block or by climbing the fence at the edge of the yard.

They’re hard to see but there’s one on the trampoline, two on the monkey bars and four in the treehouse.

And it’s not just today. Almost every afternoon, Braedan brings one or two friends home from Fairfax, racing down the block with backpacks slung over their shoulders. Then another one or two (or sometimes four) neighborhood kids will appear, usually on their bikes, which lay scattered over our driveway.  The remaining daylight hours are filled with laughter and screeches as they jump, climb, slide, swing, bike, kick, chase, or scoot from the back to the front and back again.

I love this. I love that few of them are preplanned playdates, with drop-offs and pick-ups.  I love that I can glance out my kitchen window and check on them when I can’t tell if the screams are of pleasure or pain (they’re usually of pleasure), but can also just let them go, trusting that they’ll find me if they really need me. It reminds me of my own childhood when all the neighborhood kids played together, no matter our age, endless twilight hours of Ghost in the Graveyard.

This is how it’s supposed to be.

The boys’ hair is growing back. They both have nice coverings of dark fuzz and a few of their friends are almost back to their regular pre-shave haircuts. By now, everyone should have moved safely beyond the stage of questioning looks and sympathetic glances.

I imagine that for some of the shavees from our event, especially those with blond hair and nearly invisible eyebrows and eyelashes, the experience of being bald, at least in that first week or so, was quite similar to the experience of a real cancer patient.  My kids both have dark enough hair (and eyelashes to die for) that they don’t warrant anything beyond a quick double-take. But for some, I’m certain they got quite a bit more than that as they wound their way through the grocery store with mom.

It must have been an interesting experience for the mothers of those kids too — to be on the receiving end of those looks. I know a thing or two about that. It’s not necessarily offensive; I mean, people are naturally curious and often mean well when they cast those big sad eyes on a sick child and his mother. But I spent months dodging sympathetic glances, back in the spring of 2010. Most of these took place at the hospital, because that’s where we spent most of our time during those months and because that’s where it was most obvious why my child was bald. My reaction to people’s stares was dramatically different depending on whether Austin was awake or asleep.

When he was awake, which usually meant he was tearing through the hospital hallways, skipping over tiles on the floor or climbing the low wall in the cafeteria like a balance beam, he did not look sick. Well, he looked sick, but he did not seem sick.  In those moments, I always felt a strange pride when people stared in wonder and confusion at this obviously cancer-stricken child who was nonetheless cartwheeling his way through University Hospitals. I would shrug and smile, as they gave me these looks that turned from sadness to bewilderment to pure delight.

But when he was sleeping, which he often was, slouched over in the stroller as I pushed him from one ridiculously long appointment to another, I got completely different looks. These were quieter looks that people tried to hide from me, sideways glances and quick nudges of the person they were walking next to. “Look,” they seemed to be whispering to their companions. “Look at that kid.” My reaction then was to stare straight ahead, shoulders high, chin jutted forward. “We’re fine,” I was silently announcing back (even when we weren’t). “Don’t feel sorry for me.”

But look at us now. No sympathetic glances for this kid.

April 2012


April 2012