My friends, It’s been a minute. Well, more like four years and two months. I always figured I’d return to this site to either announce that my memoir of Austin’s journey was being published or that he needed a kidney transplant. But no, neither of those things is happening.

His kidney still goes strong, remarkably so. We’d always been told he’d likely need a transplant when he reached puberty, as a growth spurt with added muscle mass will cause the kidney to go into overdrive and then peter out. Well, he turned 13 in September and is definitely in puberty (trust me).


We had an appointment with his kidney doc this past Friday and I learned that I’d been reading the most critical measure of his kidney function (estimated GFR) wrong. For years. I was really supposed to be dividing his decreasing eGFR by his increasing height (1.5 more inches and I’ll be the shortest member of my household), and when one does that, his function has remained fairly steady for a while. It has gotten worse, but only ever so slowly.

The initial prognosis remains: he is just on the cusp between Stage 3 renal failure and Stage 4, he will still need a transplant, and that could still come soon (as in “in the next two years”), but that’s a bridge we will cross when we get to it. In the meantime, he is growing, he is strong, he is athletic, he lives a normal 7th grader’s life, and — the thing that matters most — he remains.

And that book, The Wrong Side of the Window? Well, that sits somewhere on my computer waiting for the day when I will pull it out, edit it, and get it published. That day will come, I promise.

In the meantime, I’ve spent the past few years researching and writing another book, which has landed me a fabulous big wig agent in New York, and which is the real reason I’m posting today. One of the problems with nonfiction is that you have to have a “platform” in order to really attract a publisher (which has yet to happen). So, I’m doing all kinds of things to promote myself and my writing, which feels sort of obnoxious but is nonetheless necessary.

Under the Chilean Sky follows the lives of three Chileans who come of age during the heady years of Salvador Allende’s presidency, get caught up in Pinochet’s web of brutality and oppression following the military coup of September 11, 1973, and eventually end up in Cleveland Heights as political refugees.


You may have heard a thing or two about the current unrest in Chile, which I have written about here and here. I am hoping to use the knowledge I’ve gained over the past few years to establish myself as some sort of an expert in this very complicated nation. But I need your help! I’ve been posting on Medium and my work has been recognized by the editors as being of high quality. But the only way to really get it in front of readers (who I don’t already know) is to have more readers (especially those I do know, like you!) read it, comment on it, clap for it (Medium’s equivalent of “liking”), and share it. I especially need you to follow me on the site (which I think means joining, which I’m almost positive you can do for free). My profile is here.

Medium is actually a fascinating site, filled with really good articles you wouldn’t find elsewhere. One cool feature is that readers can comment within an article (instead of waiting until the end) by hovering over a paragraph and clicking on the + symbol. This allows for a real dialogue on a specific section. I promise I’ll respond if you comment or ask a question!

I’ll also be launching my author’s website soon at where I’ll post upcoming events and other important news as it becomes available. I’ve been accepted to teach a special studies course at the Chautauqua Institution this summer entitled “Chile: From Democracy to Dictatorship and Back Again.” I don’t know which week yet, but I’d love to see your faces in my classroom!

I’m gonna have to be obnoxiously self-promoting over the course of the next year (follow me on Twitter @KCDGallagher), which I am not looking forward to. But I believe this story needs to be out in the world, we need to know what happened in Chile to real people with real hopes and dreams and fears and families, and we need to know the U.S.’s role in it.

This is a forgotten corner of history. And I want to uncover it.

The people behind the curtain at Facebook headquarters love to come up with neat little tricks every now and again, algorithms that are supposed to capture the meaning of an entire year or give us a glimpse into a person’s Facebook soul: Click here and we’ll create a photo collage of your last twelve months. Click here and we’ll show slides of your most-liked status updates. Click here and we’ll create a nifty brain-shaped image that shows the words you use most frequently in your posts.

I checked my word cloud twice before sharing it publicly because it sort of made me uncomfortable. The word at the very center, my single Most Used Word of the Year, was perfectly appropriate: the name of my community and the shorthand for my public school district, both of which consume my time and energy as a full-time volunteer. But the words surrounding it didn’t give me the same “oh, those are so me” feeling. The things I love to do — running, writing, voting, traveling — were tiny, if there at all. The things I care deeply about — childhood cancer research, women’s reproductive rights, social justice — also barely visible.

“Know” featured prominently, in the number two word spot. Was that obnoxious? Was I constantly telling people everything “I know” to be true? I think it’s more likely that I start a lot of posts with, “I know I just asked you to do such-and-such, but now I’m going to ask you to do something more.” Or “I know many people have posted about this, but here is another perspective.” Or even, “You know I love this one…” before sharing a particularly appropriate meme.

Of course, there were other good words front and center in my cloud: love is pretty big, as are friends, kids, school. Not as big as they are in other people’s word clouds, but this isn’t a competition, right? Or is it? I found myself deeply impressed with the word clouds of others, even vowing to myself, “Next year, I’m going to use the word love more often. Or grateful. Or appreciate. Now those are good words.” But sometimes the word outraged is good too. And, given the current global climate, necessary. As are words like disgusted, sad or disappointed. Even words we may consider intrinsically negative, like racism, intolerance, or standardized testing could, should and do feature heavily in the word clouds of people fighting to end them. (Yes, I just used standardized testing alongside racism and intolerance, but that’s a post for another day.)

One surprise in my own cloud was the relatively small size of the word cancer. As the mother of a two-time survivor, I’ve spent years advocating and fundraising for childhood cancer research. But my son is well now, incredibly well, and I don’t need to use that stinkin’ word so much these days. No one can argue that that’s not a good thing. But does it mean I’ve given up the fight just because my own kid got better? Am I ignoring the needs of the thirty-six children diagnosed yesterday, today and tomorrow? I know I’m not, as evidenced by my ever-growing fundraising efforts each year (and by what’s in my heart)… but that’s also a post for another day.

Is there some inherent value tied up in the words that appear in our clouds? Do they define not just the language we use but who we are? Do they truly reflect what we think most about, what we care most about?

If so, then most of us who are parents to more than one child are in big trouble. I know I’m not the only mother who had one child’s name feature more prominently than another’s. The daughter of a woman I know was the main, front-and-center word while her son’s name was notably smaller, still visible but tucked off to the side. Did she love her daughter more than her son? No, of course not. But let me tell you, I know this seven-year old girl and she has an enormous personality. I find her very presence exhilarating and inspiring, but I bet her parents sometimes find her exhausting and exasperating. Maybe that’s why she was front and center.

My name of my older son came in pretty large. The name of my younger son was considerably smaller, by about two font sizes (how’s that for a new way to measure worth — by font size?). What does this mean? Does it mean anything at all? My second son, the cancer-surviving one, has been at the center of most of my writing over the years. Perhaps now that he’s well, I’m evening things out. But I doubt it’s that conscious. It could just be that the older one has recently started middle school and embarked on a newfound independence, prompting me to write about him more frequently. Or most likely, it’s that, as the way more chatty of my two offspring, he provides more Facebook-worthy quips.

I can tell from people’s sheepish comments as they share their own word-brains that we all sense the value tied up in this. I had friends whose biggest words were happy, family, love, say, “This makes me so proud!” (and I agreed; their pride seemed as justified as my own guilt and envy). Others, whose clouds featured technical work-related terms, said, “This is terribly boring. I promise I’ll write about more exciting things next year.”

Should we now censor what we say in an effort to create a more Facebook-perfect, representative word cloud for 2016? As a writer, I appreciate the value of a single word, the ability of a well-placed — or poorly placed — word to change the meaning of a sentence, paragraph or idea. But these clouds epitomize words being taken out of context. We are not single terms, we are more than a random computer-generated list of individual words, devoid of any meaning.

As we teach our children, words matter. But word clouds don’t have to.


On this day, every one of us still thinks back to where we were on that morning fourteen years ago; what we were doing, how we learned the news, who we called first. Everyone has their 9/11 story, just like everyone of older generations has their Pearl Harbor story or their JFK and MLK and RFK assassinations stories. But I always think, as we mark this day anew with each passing year, about the other meanings of this date. Lots and lots of things have happened on September 11ths, good things and bad things, big things and little things. People have gotten married, people – several that I know — celebrate their birthdays, people have died in ways completely unrelated to terrorist attacks.

We have our own September 11th story, one very different from the national story. It starts on Tuesday, September 4, 2007, the day I called the oncology department to ask them maybe, just maybe, could it possible that Austin’s tumor was growing. We had just been in the out-patient clinic the Friday before, his doctors had all looked at his belly during a super long day of chemo. But over the weekend, it seemed to be magically growing, something I didn’t really believe was possible (he had four weeks’ worth of chemo pumping through his small body after all), something I didn’t want to believe could be possible. But by the Tuesday after Labor Day, it was hard to deny any longer, so I called and brought him in and they all looked and asked questions and quietly consulted with each other in the hallway before admitting us to the in-patient floor.

The next morning, Austin had another CT scan and then there was that moment. A moment I’ve described in many previous writings because, well, because it was a pretty significant moment. In they marched, six of them —  oncologists, surgeons, nurses — to break the news that Austin’s tumor was indeed growing; in fact, it had grown by a whooping 50% and was now the outrageous and hard to fathom size of a butternut squash.

That was September 5. Not a very good day. Then Friday September 7, the tumor and the right kidney were removed. That actually was a good day, a day we breathed deeply and allowed ourselves to rest for a brief moment. But the news we needed, the pathology results that would explain why the tumor had grown so terrifyingly quickly, and that would determine the rest of Austin’s cancer treatment and that might determine the rest of our lives, wouldn’t come back until the following Tuesday.

I do not have the writing skills to begin to describe how excruciatingly slowly each second ticks by when you are waiting to hear whether your child will live or die. Those six days, between when we learned of the growth on September 5 and when the results were finally returned to us on September 11, were likely the longest and most stressful days of our lives.  We just needed to know. Good or bad — and we fully expected bad because that was the more reasonable thing to expect at that point — we just had to know. Waiting was almost unbearable.

And then Tuesday, September 11 was upon us. This was the day and it happened to be one with a date synonymous with tragedy. I actually considered calling our oncologist and telling him to wait, wait until Wednesday, a day with an ordinary date, to share this news with us. But I knew that was silly; the facts would be the same no matter what the calendar said. And we just couldn’t wait any longer.

And then Dr. Jeff appeared, bouncing like a child, excitement, relief, joy spilling over his professional doctor persona. Austin would be fine. Austin, as you know today, eight September 11ths later, is fine. But it changed the day for us. Changed the meaning of an already significant date.

Alongside our sorrow for all that was lost on this day fourteen years ago, we celebrate all that was saved on this day eight years ago. Alongside public commemorations, we have private ones. Alongside paying our respects, we pay our gratitude. In our house, this day is a good one. A very good one.

How on earth did we end up here? That’s what was running through my subconscious as I attempted to fall asleep in a hospital room on Monday, July 30, 2007, with Austin in a crib beside me. How did this happen?

An excerpt from that, you know, “book” of mine.

I won’t go all the way back, but just know that Austin was a healthy, happy and totally normal little guy for many months. In the end of June of that year, he had his nine-month check-up with his pediatrician Dr. Senders, a legend of pediatric care in our community. Mark and I sat down with this doctor when I was pregnant with Braedan and he sold me after five minutes of explaining his Daily Dose of Reading program. A doctor who spends his free time and money and energy encouraging families to read to their young children? This was my kind of guy. Then he said it wasn’t his job to tell us how to raise our kids, but to “guide and support” us, as no one would know our children better than we would. So much for interviewing three pediatricians—I signed up then and there.

So I brought Austin in for the usual well visit—a few vaccinations, his latest height and weight, and a general check-up. My little guy was in tip-top shape except that Dr. Senders thought he heard a tiny murmur when he listened to his heart. He explained that there could be a small hole in Austin’s heart which he assured me was not a huge concern as they’re relatively common and often heal on their own. I have friends whose children had holes like that which healed so I was genuinely not worried. I’m just not a nervous parent, I do not envision horrid diseases every time my kids cough or hiccup. Dr. Senders recommended Austin see a pediatric cardiologist to determine if we needed to take any further action. He referred me to Dr. Bockhoven, affiliated with Akron Children’s and not our home hospital, because I’d be able to get a quicker appointment.

“Wait a minute,” I interrupted while he wrote down the name and number. “I thought you said it was no big deal. Why do I need such a fast appointment?” I was still calm but not as calm as I’d been two minutes before.

“No, it’s not a big deal.” Reassurance. That’s all parents really need. “But I think you’d like to hear that from a specialist. This is more for you than for Austin.” More reassurance.

So, truly not fazed by this news, I went home and the issue completely slipped my mind. My girlfriend Becky asked me about it a few weeks later and I guiltily realized I hadn’t followed through; I had actually forgotten about it! Proof that I was indeed not worried about Austin’s heart, and the first of many lucky breaks. I finally called and Dr. Bockhoven could have fit me in the very next week except that I was planning to take the boys to my family’s summer house on Lake Chautauqua for two weeks. No problem, they scheduled me for the Monday after our vacation.

We spent two lovely weeks up at the lake. My parents were there, providing necessary help since Mark came only on the weekends. Every evening as I sat nursing Austin on the little second floor porch-turned-nursery, I could hear the sound of Braedan’s endless chatter wafting through the air as he and my mom worked in the yard, he pruning bushes with kid scissors and she gardening without the harsh sun. Braedan, you see, is a constant talker. He’s been narrating our every move since he was one-and-a-half, talking from the moment he wakes up until the moment he goes to bed (and sometimes even in his sleep). I have never met a three-year-old with a vocabulary like his. He uses words like “splendid” and “impressed:” “I am so impwessed you finished that puzzle, Mommy.” He also say things like, “My body is telling me it doesn’t want carrots” or “My body feels like it needs ice cream” because when he was potty-training, Mark and I used to tell him to listen to his body. Ha!

He and my mom are two peas in a pod, they’re so deeply connected. It’s not your regular love between a grandmother and her first-born grandchild; it’s like they’re buddies. They relish being together and never tire of each other’s company. So evening gardening is a sacred activity for them both.

I was struck during our Chautauqua weeks by how quickly Austin was growing: he was pulling himself up to standing and playing independently and acting like such a big boy. Every time I turned around, he’d be into something new, constantly exploring and totally fearless, unlike his cautious older brother. Classic second child, I thought, a fearless second myself. My parents took Austin and Braedan to the small-town amusement park on two (blessedly quiet) occasions and Austin did great without me, happily eating ice cream and watching his big brother enjoy the rides. Life was moving along at a fine pace with no worries.

And I was moving along, already ready for the next big thing. Mark and I had been told in pretty clear terms that having another biological child was “not medically advisable.” I’ve had type 1 diabetes for twenty-one years, you see, and two pregnancies were more than enough burden on my body. I’m healthy, always have been, but I do have a serious disease … something I need to remind myself of every now and then. I love my boys, there is no doubt about that, but I’ve never been afraid to admit that I want a daughter. It’s not just the adorable little girl outfits and decorating a nursery in the colors of the moment (although admittedly that sounds pretty great); it’s the later-on stuff, the growing up, planning the wedding, watching a daughter birth a child. My mom and I are very close. We love being together, we relate and connect and talk each other’s ears off. And I want that. So Mark and I’ve been thinking about adoption. We have a lot of love to share, we can afford it, there’s no good reason not to. Or at least there wasn’t right then as I sat up in my Chautauqua room each night completely engrossed in a new book about international adoption, already envisioning bringing our future daughter home from Guatemala or China.

It wasn’t all rosy though. Austin was fussy at night after having been a fairly good sleeper, but he also grew five new teeth during those two weeks, something I ended up repeating to doctor after doctor and nurse after nurse and intern after intern when they all walked through our door and recorded our history, always including the question, “Has he been in any pain lately? Fussier than usual?” Well, as anyone with small children knows, cutting five teeth is a rather unpleasant experience (for parent and child!), so any unusual fussiness got chalked up to that.

A few days before our trip was scheduled to end, my dad commented on Austin’s belly, asking me if it was always so hard. I looked at it and felt it and agreed that it was slightly distended but it really didn’t alarm me. Babies get that look of big firm belly with skinny limbs when they’re gassy or constipated and my response was simply, “Maybe he has to poop.” Even now, now that I know the truth behind that big belly, I don’t look back and think, “God, I should have known something was wrong.” It just looked full. And I blew it off.

But there is a moment, one that I play over and over in my mind, that happened on our last night there. Mark had come for the weekend, along with our friends and their two-year old daughter, so there was much wine and laughter over Saturday night’s long dinner. It was late and Mark had fallen asleep putting Braedan to bed (shocker, right? Who’s ever heard of a husband failing to emerge from bedtime?). Austin had been up and down, asleep and awake throughout the evening and was very hard to soothe. I had finally given up on rocking him in his bedroom and had taken him outside. We were sitting on the front porch, just the two of us, and I was holding him in my arms as I sat on a swinging chair, and he just wouldn’t stop crying. And I remember so distinctly, like it was yesterday, cradling him in my arms and whispering in his ear, “Austin honey, I don’t know what’s wrong with you.” Oh, I shake my head when I picture the two of us there on that dark and starry night because if I had tried to imagine what might possibly be wrong with him, I could not have even come close. Not even close.

The next day came and as I was packing all our gear and getting everything ready for the car ride home, my mom watched Austin, since Mark and Braedan were already on the road. But my mom, who never calls when she’s babysitting an unhappy child, who never asks for help or complains when a grandchild in her care is missing his own mother, this time, this day, she brought Austin back to me and said she thought there was something wrong. She thought his stomach hurt, because he kept rubbing his side. Yes, that very side that my dad had questioned just a few days prior. So I changed him and nursed him and away we went, leaving our relaxing vacation and our normal lives in our wake.

We got home and you know how it is: there are piles of mail to go through and phone messages to return, laundry to be done and groceries to be bought. Mark stayed home Monday morning because we were about to begin a partial kitchen renovation (how’s that for great timing?) and he wanted to meet with the contractor. Another lucky break since Braedan stayed with him instead of coming to Dr. Bockhoven’s with me and Austin. I packed lunch so we could run a zillion errands afterward, and we headed off for what we thought was a regular old doctor’s appointment. And here’s where we began our dizzying descent into another, much darker, world.

In walked Dr. Bockhoven, the first of many heroes we would encounter in this great saga, who, after one glance, felt Austin’s stomach and voiced concern: “Does his belly always look like that?” He sent us for the scheduled ECHO which happened to include an abdominal ultrasound. And it lasted forever. Really, we were up on that table together for more than an hour. Austin was crying, I was lying there on my side nursing him and thinking how glad I was that Braedan wasn’t with us, and the technician, this lovely older woman, just kept checking and checking and checking. It didn’t quite occur to me until afterwards that she spent way more time looking at Austin’s side than at his heart, the original purpose of our visit. Before we walked out, she asked if I had any other children and then handed me two stuffed animals and wished me a gushing and solemn farewell. I thought she was being friendly or felt bad that it had all taken so long. I didn’t understand that she had just made a terrible discovery.

Dr. Bockhoven, who had been watching on his office computer, met us at the door and led us down the hall past the room where our stroller and lunches and normal lives were waiting and into another room where he pointed to the phone and said that Dr. Senders wanted to talk to me. I sort of chuckled as I picked up, making some stupid joke about this not being routine protocol and nodded my head as he told me that my baby had a seven-by-seven centimeter mass in his belly. (We learned the next day that it was quite a bit bigger but seven-by-seven sounded plenty big to me at that moment.) That moment. The moment that sits like a big fat black smudge down the center of the page that is our lives, dividing everything into before and after. There is no real way to describe it. I cannot separate out all that came next, all that I now know, from my innocence and naiveté at that particular moment in time. I’d like to say the world stopped spinning but it was more like the world started spinning faster and I stopped. “Surreal,” though overused is the only accurate word. I remember Dr. Senders asking me how Austin was right then and I laughed and said he was eating the phone cord and wriggling to get free from my tightening grip. Totally normal Austin behavior. This child? This child has a tumor?

I have to admit, as implausible as it sounds, that I did not think cancer. Well, I’m sure I must have thought it but I did not believe at that moment that my child had cancer. Dr. Sendres had said the word “mass” actually, not tumor. And what the hell is a mass anyway? That’s not necessarily bad, right? . . . Right?

Dr. Bockhoven and I walked back to the room where we had started hours earlier, when we were different people, and he tried to explain things to me. I remained calm, nodding my head, not grasping the severity of the situation or at least not allowing myself to. Dr. Bockhoven was apologetic, sorry that he, a total stranger, was the one to break this news. And, while he no doubt has to share bad news with parents, this bad news is of a completely different nature. Tumor discovery is not his area of expertise. I thanked him time and again because, truly, he went above and beyond. He could have easily sent us back to our regular doctor with a simple, “You should probably have this looked at.” And you know me, I would have waited until Kirk and Sarah’s baby shower was over and the kitchen was finished and back in order before I would have gotten around to making another appointment.

No such pause here. Instead I’d been told by Dr. Senders to go home, pack a bag and check in at the emergency room. “No need to run red lights,” he told me so I tried to sit calmly through them but was getting increasingly anxious by my inability to reach Mark. He was not answering his cell or the home phone, and Mark is outrageously reliable, always there when you need him. I ate my peanut butter and jelly sandwich on the drive (isn’t peanut butter and jelly supposed to make everything better?) and Austin, exhausted from what we then considered a major medical procedure (oh, irony), quickly fell asleep in his car seat. I got home where there was still no sign of Mark despite his car in the driveway, and Morey, our contractor, had questions. Leaving Austin asleep outside, I brushed Morey off and started grabbing clothes out of the enormous pile of laundry to throw into my overnight bag. I was later able to laugh at the outfits I picked; you would have thought I was going on a tropical vacation with the assortment of cute summer skirts I threw in there. I was rushing around trying to remember my glasses and diabetes supplies and feeling so thankful that I actually had a charged cell phone (a total rarity for me, the queen of the dead cell phone). Morey stopped me to say he couldn’t find Mark and needed the dimensions of the fridge we’d ordered, but his words took on a Charlie-Brown’s-grandma-on-the-phone quality, so I interrupted: “Tell Mark he needs to call me. Austin has a, a thing. A mass. Something growing inside his stomach that isn’t supposed to be there.” There: I’d said it out loud. And finally, for the first time, I started to cry. But there was no time for this, so I left Morey confused and guilty as I peeled away.

And lo and behold, right as I reached the corner, Mark appeared, finishing up a run with Braedan asleep in the jogging stroller. I waved him over impatiently and it all came tumbling out, words and sobs and fear and uncertainty. He was calm (Mark is always calm), said he’d bring Braedan to his parents’ house on the other side of town and meet me at the hospital. He kissed me, told me he loved me and rushed home to find Morey running down the driveway to repeat the news.

I called my mom, not expecting her to be home from Chautauqua yet but figuring I could leave a message. Well, she answered and now I had said it three times to three people, “Austin has a tumor,” and it was starting to feel real. The cloud of calm, the swirling strangeness of the morning, the fog I had inadvertently walked into, was starting to lift and I was slowly realizing that this nightmare was happening. This was actually happening. She asked a bunch of questions to which I had few answers and said she’d meet me at the hospital.

Here comes another part that I can now laugh at because it is just so me. Dr. Senders had told me to use the valet parking outside the emergency room, but I, little Miss Independent, I-refuse-to-admit-that-this-is-a-real-emergency, decided instead that I would park in the parking garage just like everyone else. Only the parking garage I chose happens to be located many a secret corridor away from the ER. So there I was, one hand pushing a stroller that held only my overnight bag, with a sleeping Austin in my arm, as I wandered around the basement hallways for a good fifteen minutes, one tunnel leading to another, every sign pointing back the way I had just come. I was down by the loading docks—maintenance guys were driving little tow-lifts around—and nobody could seem to point me in the right direction! I had fallen into the rabbit hole, Alice in my own awful wonderland.

Finally a sympathetic woman walked me from one winding hallway to another and into the back entrance of the emergency room. They whisked us right in—they’d been expecting us—and I was steered to a row of seats in the back to wait for Transport, which was basically someone to walk us back up to what would soon become “our floor” and which (of course) was where I had started out fifteen long minutes before. This is when I bumped into Marissa, a woman I knew from our community Baby & Me many years earlier. A pediatrician doing an ER fellowship, she had taken the call from Dr. Senders describing our case. But it wasn’t until she saw us that she realized she knew me. As Transport arrived and I got up to leave, she gave me a hug and said, “We can treat this. This is one we can treat.” Damn right they can treat this, they better treat it.

It had never occurred to me that it might be something they couldn’t treat.

I was led back upstairs via a much more direct route, and through two sets of doors where washed our hands in between because of “compromised immunology,” a little sign of what was to come. My mom was already there, wondering what on earth had taken me so long, and there were a zillion nurses checking us in and doctors and residents and interns coming through and taking our history and making notes and nodding reassuringly. And Austin, he was just as regular as could be, playful, wanting to get down on the ground and crawl, totally oblivious to the crisis brewing around him. My brother Kirk showed up, all too familiar with that hospital since Sarah had been released just the day before after ten inpatient days to stop pre-term labor. I hadn’t even been over to visit her yet—that was on my list for the afternoon, along with cooking them dinner. Kirk handed me a pen and a notebook and told me to write down the names of all the doctors I’d meet and any questions that popped into my mind. I took it, thanked him and, that night when they’d all gone off to their own safe beds, I started writing. And never stopped.

The rest of the afternoon was a blur. Mark arrived shortly and we stood shoulder to shoulder while a flood of doctors marched through our space, asking the same questions as the one before them. We were transported back to the basement for an abdominal ultrasound. At some point in the evening, we remembered to order sandwiches from the cafeteria. Later, after everyone else had left, Mark and I sat in the dark hospital room with Austin asleep in the crib next to us. We talked in hushed tones, not quite able to finish our thoughts, starting sentences and then trailing off into nothingness.

Dr. Senders appeared, long past the time he should have been home with his own children, for what amounted to a counseling session. But we were so not ready for all that he told us—it was so much more than we could wrap our heads around. He talked about the stages of grief and how Mark and I might each be in a different stage at any given moment and how important it would be for us to be aware of one another’s needs. He talked about Braedan and how we had the power to shape this journey for him, not by being falsely optimistic or hiding the truth, but by answering his questions and providing him with just enough information—and not too much—so he would feel safe. He talked about all the help we’d get from others and warned us not to let coordinating that help become an extra burden. He said we were about to start a marathon, one we hadn’t trained for, and that we needed to pace ourselves and rest on the rare downhill because we were bound to hit spots that would be harder than we could ever imagine. He promised us we would reach the finish line. And I, needing something concrete to hold on to, grasped at his literal words and felt optimistic—I’ve run marathons! I can do this! But I had no idea.

Before he left, he said that that particular day, July 30, 2007, was the first day of the next stage of our lives. Everything after that day would be different than everything that had come before. But we weren’t ready to know that yet.

We had no idea.

Switching gears entirely, as I am wont to do, I’m excited to tell you all about a project I’m working on with the teachers at Fairfax. I’m not just sharing this because I find it interesting (and hope you do too), but because I’m hoping for active engagement from people both near and far.

The original Fairfax School, pictured in its historic glory below, opened in the fall of 1915. So this coming school year, our students will dive deeply into 100 years of history, with a special focus on what the school experience was like for young people in each decade.  Each month will be dedicated to one decade, with the first and last months covering fifteen years instead of ten (there’s only so much time our kids are in school, after all). It’ll be somewhat (okay, very) tricky to fit all of this in given the extreme expectations placed on our students and teachers in terms of Common Core content they need to master, but we’ll do our best to align the components of this project with the various learning objectives they’re already required to cover.


The younger students will focus on concrete things, like what students wore to school, how they got there, how/what/where they ate their lunch and so on. I’m hoping for them to have as many physical artifacts to study as possible, including toys, clothing, and small appliances (cameras, telephones, radios, clocks) from each decade. If you happen to have anything that fits into one of those categories that you’re willing to share, please contact me.

The older students will look at local, national and global issues in each decade, considering how they impacted students’ lives. They’ll also focus on how public education has shifted over time, with desegregation movements both locally and nationally and the inclusion of special needs students. They’ll study technological, scientific and medical advancements, as well as the physical development of our community (hopefully creating a decade-by-decade 3D model of the homes, roads and businesses in the area between Lee, Fairmount, Coventry and Cedar). Any experts on that are welcome!

If you or anyone in your family went to Fairfax School, we’d like to have you come in to be interviewed by students, according to the decades listed below. If you aren’t local, interviews can be conducted via email or phone. For the earliest period (1915 to about 1930), we’ll take anyone willing to share their elementary experience whether they went to Fairfax or not. I already have contact info for two women who graduated from Heights (but not Fairfax) in 1933 and 1936, both willing to participate.

We also want photographs, whether class pictures or candids. We would love to see the inside of the original building as well as pictures of the demolition and construction in the 1970s. (One of my earliest memories is of watching the wrecking ball knock down the original building in 1975 or 76, shortly after we moved to Cleveland from New Hampshire.) We’d also love to hear about the transition from students or staff who attended both buildings. Any other paraphernalia (t-shirts, newsletters, concert programs, yearbooks, school calendars, work samples) that you’re willing to share would be enormously helpful.

Those of you not connected to Fairfax School can participate too. I’m hoping to arrange for a parade of cars from each decade, sometime in the spring (April or May 2016), so if you have a vintage car you’d be willing to drive over, that’d be awesome. If you have any historical expertise, whether focused on Cleveland Heights or on the world, we’d welcome your input, as well as any physical artifacts (or storybooks) that show the ever-shifting face of time.

The community, and especially all alumni, will be invited to a Living Museum celebration at the end of the school year, next June, where students and staff will showcase all they’ve learned over the course of the year. This project should be a meaningful, hands-on way to connect our current students to both history and to the community around them, and I’m hoping we’ll be able to share some of our project with other schools that will reach this milestone in the near future.

Ideas, thoughts, questions, suggestions? I’d love to hear from you! Comment below or on Facebook.

September: 1915-29 
October: 1930-39
November: 1940-49
December: 1950-59
January: 1960-69 
February: 1970-79 
March: 1980-89
April: 1990-99
May: 2000-2015
June: Culminating project

It all started on a swelteringly hot Monday in July. Almost eight years ago. Our boys were 3 1/2 and ten months old. We lived in a different house. We were different people.

Because it changed everything.

In ways large and small, obvious and subtle, it shifted and molded each of the four of us into the people we are today. We will never ever know what our lives might have been, who our boys may have become, what paths we would have pursued had we not been sidetracked by childhood cancer. Sidetracked…? No, that doesn’t come close to describing what it did to our lives. Waylaid. Ambushed. Flipped over, thrown around, and knocked senseless.

Here’s the tally of physical scars: Thirteen visible on his body, some small, some medium, one enormous. One and a half kidneys gone. Twelve rounds of radiation. Fourteen months of chemo. Countless blood and platelet transfusions. One Broviac line, one PICC line, one Mediport. Temporary dialysis. More medications than I can name, some oral, some intravenous, some subcutaneous. An ileus…or two. MRSA and C-diff, at the same time. If much of this sounds foreign to you, consider yourself lucky.

Actually, I consider myself lucky. In every way that we were outrageously unlucky, we were equally, unexpectedly, miraculously lucky.

And today, he had his five-year scans. To check out his kidney, liver, lungs and heart. And everything is normal, unchanged, unremarkable. As we sat in the office with his (new) oncologist at the end of our day, she ran through the list of things to worry about moving forward (who doesn’t need a list like that?): Infertility, heart problems, kidney problems, secondary cancers, cognitive issues, hearing loss, and scoliosis. We went through each, one by one, comparing them to the cumulative doses of his six chemo drugs.

And he should be okay.

The cognitive issues and hearing loss would have already occurred, she expects him to remain fertile, his heart is being monitored already. Secondary cancers would reveal themselves through his regular lab work, but he is well below the level of chemo considered dangerous in that regard. There are no guarantees — and some items on that list (ahem, kidney problems) are not potential late effects of cancer treatment that we worry about, because they are instead obvious and definite parts of his everyday life that we worry about. He still has stage three renal failure. He will still most likely need a transplant.

But what he does not need, ever again, is to be scanned for Wilms tumor. He does not need annual or even biennial checks of his liver or lungs or kidney. Whatever comes his way — and stuff will come — it won’t be kidney cancer. That dragon has been slayed.

By this guy:


My apologies to the other moms whose sons may come home begging for a mohawk tomorrow,

but we were in no mood to say no.FullSizeRender(22)


10. School levies are how we fund public schools in Ohio. Nobody likes it and it’s not even constitutional but it’s the only way districts can meet rising costs associated with natural inflation. It is not a sign of inefficiency or mismanagement when a district asks for another levy. This is what the state forces schools to do.

9. The district has LESS money than it had in 2011, when we passed the last levy. The state has cut funding by $2M this year, and we lose an additional $1M to charter schools each year.

8. The district has consistently been rated by the State of Ohio as being EXCELLENT stewards of taxpayer money. Scott Gainer was named the single BEST CFO of any public school district, non-profit organization or governmental agency in Northeast Ohio.

7. Administrative costs have NOT risen by 52%, a lie being spread by the opposition. The district had 42 administrators in 2011 and 38 in 2014; a reduction of 9%. Facts matter.

6. The district has cut $3M from its budget while still protecting classroom instruction. We had 486 teachers in 2011 and 481 in 2014, a reduction of just 1%.

5. Passage of this levy protects the value of your home. No one wants to live in a community without strong schools.

4. Public education is a cornerstone of our society and our democracy. We cannot be a strong community or a strong nation without well-funded, effective and engaging school that are educating the citizens of tomorrow.

3. There are people on the other side who’ve said things on social media like, “Why should WE have to pay to educate THOSE children?” We cannot let hate win in this community. That is NOT who we are.

2. Our schools are educating ALL of our students. According to the State’s Value Added scores, we are doing a BETTER job at showing academic growth for all subgroups of students than Shaker, Solon, Beachwood, Lakewood or Hudson. This is INCREDIBLE and we should be shouting it from the rooftops!

And, the number 1 reason why everyone should vote FOR our schools on Tuesday is actually another 5,500 reasons. The opposition always accuses us of making campaigns “about the kids.” But we’re talking about public schools here; of course it’s about the kids. It’s about every child who walks into our buildings, whether they are black or white, rich or poor. Whether they’ve bounced around in five different school districts in three years or have been in the Heights since birth. Whether they’re identified as gifted or living with severe disabilities. Whether they are angry and filled with doubt or eager and filled with hope. EVERY child is worth our investment; EVERY child deserves your vote.

When state report cards get released right in the middle of a school campaign, both sides are bound to seize upon them as proof that their cause is the right one. Well, guess what? State report cards were just released and they prove that our cause is the right one.

Most of the measures on the state report cards have remarkably little to do with what goes on inside a school and much more to do with what goes on outside a school. Study after study has shown that scores on standardized tests (what much of our report card’s grades are based on) do not reflect the quality of a teacher’s teaching or a student’s learning, but instead simply reflect the socioeconomic background of the particular children in that particular district. Look closely at a school’s test scores and you can make an educated guess about how many of those children’s parents went to college and how many of those families are living in poverty. Our local test scores reflect that as well.

The state report card’s only real measure of how much a teacher is teaching in the nine months that he or she has a certain student, and the report card’s only real measure of how much a student is learning in the nine months he or she is enrolled in school, is “Value Added.” (Let me say here that there are many, many other measures of how well a teacher is teaching or a student is learning that aren’t easily quantifiable and therefore not considered on our report cards, but that’s a post for another day.) Value Added means pretty much what it says it means: how much academic value was added to that child’s educational life in the course of that one school year? And the measurement is straightforward: assess a child’s abilities and skills in August or September (how well they can read, what their math skills are, and so on) and then assess again in May or June. This shows one of the few things we can measure that’s actually worth measuring: their academic growth.

Here’s how the Ohio Department of Education describes Value Added: “This is your district’s average progress for its students in math and reading, grades 4-8. It looks at how much each student learns in a year. Did the students get a year’s worth of growth? Did they get more? Did they get less?”

There are four categories on which districts are graded: Overall, Gifted Students, Students Achieving in the Lowest 20th Percentile, and Students with Disabilities. And for the second year in a row, the Cleveland Heights-University Heights School District earned A’s in every category of value added: A, A, A, A.

This means one thing: Our teachers are teaching and our students are learning.

But how can this be, one might ask, when many of the other test performance measures are low? Consider this scenario, some version of which our schools face every single day: A 4th grader moves into CH-UH from another district, reading at the first grade level. That child is placed in a small class with a reading specialist to learn the necessary skills to become a reader. Imagine he works extra hard, as does his teacher, and demonstrates one-and-a-half years’ worth of growth in that one school year. That’s awesome! That is better than expected and means he succeeded, with the help of his teachers, in moving from reading at a first grade level to reading at halfway through a second grade level. It also means, unfortunately, that when he takes the 4th grade PARCC test in reading, he will fail (especially because the PARCC uses reading material at one to two grade levels above the grade being tested). And that’s the result that people will point to in the newspaper to say that our district is also failing. And yet, that couldn’t be farther from the truth. The kind of growth that student demonstrated, as evidenced by CH-UH’s four A’s, points out an important truth: Our teachers are teaching and our students are learning.

Now, some of the naysayers (we have naysayers, in case you hadn’t noticed) might assume that this Value Added category must not mean much; maybe it’s easy to earn four A’s. I will show you, through comparison with other districts, that it is not. I don’t mean to put these other districts down (I know and love many people whose children go to school in them and they no doubt outperform us in other categories), but such a side-by-side look is necessary to understand that it is not, in fact, easy to earn all A’s in Value Added.

Our neighbors to the south (Shaker) earned D, A, C, C (see the categories listed above to refresh your memory). Someone may say, “Well, their kids are clearly doing too well to begin with to even show that much growth.” But then I would reply, “Look at Solon, who earned B, A, B, A.” Hudson earned A, A, C, A, which is sort of revealing (maybe they don’t have the same kind of experience we do in CH-UH at reaching the lowest achieving kids and helping them grow). Other districts widely believed to be doing a great job educating their community’s children, are (Beachwood earned A, B, B, A — almost as good as Heights). And this is not one of those cases where starting with low scores benefits you (as in, then you have more room to grow); East Cleveland earned F, F, C, C. Two districts that we’re often compared to (Lakewood and Euclid) earned A, D, A, B and A, D, A, A respectively, which shows that CH-UH is doing a noticeably better job meeting the needs of our highest achievers and helping them grow as well.

I don’t honestly believe that levies should become referendums on the performance of school districts, but they very often do. I have seen, time and again, in the comments of the anti-school folks: Where are the results?

Well, here they are. The results show that our teachers are teaching all our students, from the one with disabilities to the one identified as gifted. The results show that all those students are learning, from the one who started at the bottom to the one who started at the top. Now those are what I call results.

Every time a local school issue appears on on the ballot, an army of district parents try to convince the general public that our children are “worth it,” that they “deserve” a publicly funded education. We share all their praise-worthy achievements and announce to everyone who will listen that our local kids placed third out of 37 teams at last weekend’s Robotics competition or that our middle schoolers hold a regional record for victories at the Power of the Pen, or that the Barbershoppers ranked first in the world last year at an a cappella competition. I write blog posts about how “nice” my boys’ peers are and drone on about how much science and math content they’ve learned.

But you know what? This isn’t necessary. Or it shouldn’t be. Of course our kids deserve a publicly funded education. All kids do. Free, appropriate public education is a cornerstone of our modern democracy and we cannot raise productive, engaged citizens without it. We cannot come close to claiming to be a land of opportunity if there is no opportunity.

Here’s the deal: Our local school district is asking for voter approval of a 5.9-mill operating levy in less than a week and I happen to be one of the chairs of that campaign. And I’m sick of trying to convince people that our community’s children, even those who are poor, even those who are black, even those who might seem disengaged or irresponsible, are worth their support and their tax dollars. In my opinion, that support should be automatic.

Let me explain a little about the wonder of House Bill 920. I know, a blog that covers childhood cancer and now the nuances of school funding in Ohio . . . what a way to build a following! But bear with me a bit because it’s actually fascinating, in a hard-to-believe-that-could-possibly-be-true kind of way.

In 1976, at the height of rising inflation, the Ohio General Assembly passed HB920, which froze all tax revenue going to schools (and public libraries, but not city or county governments) at their 1976 levels. Not at a percentage or a rate, but at the actual dollar amount. The only way to increase that incrementally is with voter approval of new operating levies. I don’t think anyone can reasonably expect any district anywhere to provide an education in 2015 with the same amount of money they had in 1976.

But even when levies are passed, the need for additional levies never goes away. The state has cut $2 million in funding to our district in the past few years, not to mention what we lose due to foreclosures or reduced collections on property taxes, or the nearly $1 million going from our district’s budget to charter schools this year (including those that are completely disreputable and only out to make a profit) and more money still to fund vouchers. What all this means is that the district has LESS money with which to operate than it did when our community passed the last operating levy in 2011.

The money this levy would generate wouldn’t lead to raises (aside from agreed-upon step increases for teachers) or anything new; it would simply allow us to maintain. Because districts are legally required to balance their budgets, ours would have to cut $6 million if the levy doesn’t pass. That would undoubtedly impact every aspect of the district, from classroom teachers and programming to administration. That’s not an empty threat as a campaign tactic; it’s our duty and responsibility to tell people honestly what will happen if this fails. Another sad truth is that if this fails, the need for money will not go away and the district will have to come back again and ask for approval of a new levy. Again, not a threat, but a fact.

There has been much talk lately about administrative costs and I truly hope people will read this section carefully because it’s important that we all understand what we’re talking about when we say those words. The Ohio Department of Education requires districts to categorize all certified staff who don’t provide direct classroom instruction to students as “administrators.” This means that the salaries of our social workers, counselors and psychologists all fall under “administrative costs.” Do we spend more than most in this area? Yes, because we are doing an excellent job meeting the varied and complex needs of our largely impoverished student body. In addition to the “typical” social and emotional issues social workers help students with, ours also ensure that our district’s homeless students have daily transportation from their temporary shelters to their home school buildings. Or that the child who can’t see the board but can’t afford glasses gets in touch with the right agency who can provide them. Or that our young mothers access the services they need to stay in school and graduate.

The counselor in my sons’ elementary school hosts a lunchtime book group for students struggling with social issues. She organizes the Girls on the Run program for our 3rd through 5th grade girls who need both extra physical activity and a way to build self-confidence. She manages the Peer Mediators who help find peaceful resolutions to conflicts during recess. She attends every single IEP meeting for the many students in our building with special physical, emotional or learning needs and is constantly working directly with students, either individually or in small groups, all day every day and often well into the evening. Our social workers and counselors work tirelessly to ensure that all students and their families have access to shelter, food, electricity, running water, medical care and clothing so they can come to school ready to learn. This is not what you may envision when you hear the word “administrator.” They’re not sitting in some fancy corner office with their feet up on a desk (not that our actual administrators are doing that either, of course!).

Another piece of the administrative costs puzzle requires just a quick explanation: For the last year for which the ODE published data, our district’s teachers asked that their salaries be spread out over twelve months instead of the usual ten, but those final two months happened to be in the next fiscal year. This was a one-time recording issue, but it makes it look like the district spent one-sixth less on instruction than it actually did.

The other complaint that we frequently hear is that our taxes are too high (even when they’re offset by affordable housing). It helps to understand some of the historic reasons behind our local tax structure. The very things that make our community special also mean that we pay more in property taxes. Years ago, residents fought against the construction of freeway exits both where the Shaker Lakes Nature Center now sits and where the Cedar Lee Theater is. I’m glad to not live near a freeway (except when I need to get to one, of course!) or the industrial parks and chain restaurants that inevitably pop up around them. I’m glad to live in a neighborhood that values its small, independently owned businesses and green spaces. But, without a large commercial or industrial tax base, a heavier burden is placed on the shoulders of individual homeowners. This is unfortunate, but it’s also reality. We must keep our community strong and we can’t do that without strong schools. And strong schools require basic operating funds.

Please join me on Tuesday, May 5th in voting FOR our children, our schools and our community.

There’s something about your own kid growing up that makes it feel unique to you, as if no one else has ever had the surreal experience of watching their child — the one they’d rocked to sleep and pushed on a swing — suddenly morph into a tween or a teen or (horror of horrors) an actual adult.

I’m feeling that way with Braedan right now, as we look ahead to his 5th grade promotion ceremony, a mere six weeks away. From this little critter, so eager to walk to his first day of kindergarten . . .

First day

September 2009

. . . to the mature and confident (and sports and tech-obsessed) eleven-year old he’s become.

I am so glad he’s spent this six-year journey of growth and discovery at Fairfax School. I’m one of those parents who doesn’t actually think you should shop around for schools. Might sounds strange coming from a former teacher, in a world where all good parents search through every possible option to pick the very best for each individual child. I had fleeting moments of guilt, in those early days, for not putting more effort or thought into it. But I tend to think, unless something’s seriously wrong, you just attend your local neighborhood public school and take what comes. That’s what most parents did in my day. All the kids on the block, with the exception of a few Catholic families, simply went to their public school.

Now there are state rankings and test scores and data to pour over, tours and interviews and “educational philosophies” to consider. Like so much of modern parenting, picking a school for a five-year old requires an advanced degree. And causes undue stress, because no option out there is ever going to be perfect and yet our kids will still be okay.

In our case, we signed Braedan up for the one we could walk down the street to and that was that. He hasn’t always been thrilled with school, he had one year in particular that was less than stellar. But it helped him grow, it taught him he could be resilient and thrive in any environment. And taken as a whole, especially from this reminiscent vantage point, Braedan’s elementary experience has been wonderful. He’s had teachers he loves who he knows love him back. He’s learned an extraordinary amount (way more than I learned when I was a student in the same building). He’s had the chance to enroll in after-school activities that range from drama and racquetball to cycling and skiing. He’s done things few elementary kids have the opportunity to do, like sing on the stage at Severance Hall or spend three nights in the Cuyahoga Valley with his classmates exploring the great outdoors.




And his friends. Well, being that he’s a very social creature (understatement), his friends have been the highlight of it all. And he is friends with everybody. Especially this year, with his grade so deeply connected by their role as building leaders and their shared history, I can think of very very few children he wouldn’t call friends.


I’ve watched him rally his schoolmates around causes he believes in, like Purple for Becca Day or St. Baldrick’s. In kindergarten he was the lone shavee in that building. By second grade, he had a few friends alongside him. This year. . . take a look.


More than anything else, I’m so happy that he and Austin both attend school in a building and in a district where there is such a high premium on nice. That’s the biggest difference I see between the Heights schools I attended in the 70s and 80s and the Heights schools of today (I guess Heights has changed, after all). I don’t think we were particularly cruel or anything, but we were much more concerned with being cool than with being nice, even by 5th grade. Kindness and tolerance and acceptance are now celebrated and honored from kindergarten through 12th grade. Of course, this isn’t the case for every single child every single day across the board (they are human). But when I hear from parents who’ve moved their kids from local private and parochial schools into Heights schools (and especially into Heights High), one of the things they rave about the most is how nice their children’s peers are.

I’m so proud of Braedan for all he’s accomplished in his first six years of schooling. And I’m so excited for all the incredible opportunities that lie before him as he moves into Roxboro and eventually Heights.

But I still can’t believe that this little LeBraedan is actually growing up . . .


April 2020


April 2020