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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.


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 I was a freshman in high school, I took an introductory journalism course. That spring, a girl I’d known from my neighborhood went with the Heights instrumental music program on a trip to Asia, where she contracted a rare lung disease, which landed her in a coma upon her return home. She died on her sixteenth birthday. I wasn’t yet experienced enough to be on the official newspaper staff, but this girl and I had lived on the same street and had gone to the same school since our earliest elementary days, so when nobody stepped forward to write the article on her life, I did.

I sat in on the counseling sessions the school had set up for her friends, furiously scribbling down the conversations between her closest friends and her boyfriend. Then, accompanied by my mom because I must have been nervous, I walked over to her family’s house and sat at a picnic table in the sideyard to interview her parents and her younger brother. It was, to say the least, a fairly intense experience for a 15-year old, as I dug into their grief and then had to craft a story (with a strict word count) that captured all she had been to those who loved her. I was proud of the story I submitted, even though the one that was eventually published had been sanitized and read a little more news article and little less human interest.

But the significance of that experience is not lost on me as I’ve now spent years upon years writing about darkness and sadness in a way that I hope brings a sense of light and comfort to people.

Today, I was asked to write the article for the Heights Observer on Becca Meyer, who died on Saturday, less than twelve hours after turning six.

Sometimes, in our darkest days with Austin, when we thought he might not survive, I would wonder what my life would have been like if our second baby was conceived a day earlier or a day later than Austin had been. Or even a minute earlier or a minute later. What if I’d gone to the bathroom, gotten a drink of water, fallen asleep first and this child with these specific genes never came to be? Would we have been spared our great sorrow, our worst fears, his tremendous suffering? But every time I allowed myself to think that thought, it was immediately replaced by the full and unwavering knowledge that I would take Austin, with all his physical faults and with all the suffering that we did endure and that we may have endured. I would always still choose to have had him, even if it was only for a short while.

I have to imagine, that because Becca was adopted, her parents have had a similar and yet powerfully different set of what if’s to ponder. What if there was one family ahead of them on the list? What if some other child had been born on June 6 instead of June 7 and they’d been called for that one? What if her birth mother had decided otherwise? How different would their lives be? Would they be spared the unthinkable grief they now feel?

But I know without hesitation that if they’ve ever allowed such questions to run through their minds, they are immediately replaced with two unwavering truths.

One: They would always take the joy of having known this spark of a child, the gift of having loved her and been loved by her, … for the enrichment of their own lives, they would always choose Becca.

And, more importantly, two: If the child we knew as Rebecca Alison Meyer was destined to be in this world and if it was written in her genes or in her stars that cancer would claim her life, then who better to entrust her short life to than the Meyers? Who better to surround her with love and laughter and friendship and all things princess than Kat and Eric, Carolyn and Joshua? Who better to hold her, guide her, sing to her, dance with her, kiss her and love her than the family she was given? How lucky were they to have been given the incredible honor of shaping the course of her too short life? How lucky were they to have had the opportunity to fill it with so much joy? How lucky was she?

Loving her so well and loving her so much may well be the greatest burden of their lives.  But I do not doubt that it is also their life’s greatest blessing.

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We may never get to use the word “survivor” to describe Becca Meyer. But let me tell you, that girl is surviving.

Yesterday, today, and, we certainly hope, tomorrow, she is living a life so filled with love and laughter and friendship and family that some may be rightfully envious of her. She is alive and she is thriving — running, jumping, playing and doing it all with a full-sized dose of spice and sass.

Take today, for instance. Today was Purple for Becca Meyer Day at Fairfax School. The Student Council created a long list of Spirit Days for the month of May and Braedan’s suggestion was this one. It was carefully planned for a Thursday because Becca’s at a hospital in Pittsburgh every Monday, Wednesday and Friday morning. I knew that Braedan was nervous that people might not participate, or that it would only be the girls in purple, or that (worst fate of all) Becca wouldn’t notice. He wrote his own message to read over the PA system on Wednesday afternoon reminding people of the day and why it was important, closing with, “It doesn’t matter how you look because you’ll be doing something good for someone else.”

We found purple t-shirts in the bottom of my kids’ drawers and were all ready. And then Becca threw up yesterday. On her car ride back from Pittsburgh. Which could be a sign that the time had come, that the end was about to begin. As I put the kids to bed last night, I debated whether I should tell Braedan that tidbit of truth to prepare him for the possibility that she might not be at school on her very own day. But he was riding high after a super successful trumpet quartet with three of his best friends, and I was holding tight to the hope that Becca’s was just a passing sickness, some normal explanation for normal vomit with a normal outcome.

Well, she was at school today, in head to toe purple, as were many of her schoolmates. I was most impressed with the number of kids, boys and girls alike, from kindergarten through fifth grade donning that royal color. And Braedan was most pleased. And — all that really matters — Becca was most pleased. And full of spice and sass.

At dismissal time, she marched out the door arm in arm with her best friend since birth, both purpled to the hilt. They encountered a beloved teacher in our building, who had sprayed her hair purple for the day, and she pointed it out to Becca, who promptly stuck her hands on her hips and said, with a personality bigger than her poofy princess dress, “No. You. Didn’t. That’s PINK!

Today, she is surviving.

I lied to Kat Meyer. It was early last fall, after the kids had gone back to school and her family was briefly home in Cleveland during their months-long stay at the Children’s Hospital of Philadelphia. I told her, expert that I was in such things, that the year ahead would be exhausting. It would be sad, hard, frustrating, terrifying, surreal and completely and utterly exhausting. But then it would be over. They would pull together and they would do this hard thing and then they would be okay again.

And there was my lie.

I only said it because I believed it was true. That first critical surgery, where doctors cut open the skull of her five-year old daughter to remove a “bad rock” from her brain, had been successful. And so they would move on, going through the miserable motions that are childhood cancer treatment, and then they’d get on with their lives. Becca would get on with her life. Or so it seemed.

I spoke with more truth recently, after they discovered her cancer was back and treatment options nearly nonexistent, when I told her that she had entered a realm I knew very little about. Because, while I’ve heard the words “Your child has cancer,” on three separate occasions, I’ve never heard the words, “And there’s nothing we can do about it.”

Quite honestly, I don’t know a thing about death. Not in any real sense at least. And yet I’ve become this de facto expert, helping people prepare their children, helping people grieve and heal, planning and organizing and gathering, comforting the mom whose husband died suddenly, giving advice to the friend whose mother is getting close.

But I haven’t experienced any of it myself. I’ve never lost anyone. Besides my grandparents, I haven’t lost my parents or my in-laws (nor even had a significant scare). I’ve never lost a cousin or a sibling or even a friend. I’ve barely experienced death at all.

I have glimpsed it though. Like a shadow lurking behind me. I’ve felt it there, hovering over my shoulder, slipping just out of view when I turn to stare it straight in the eyes. It’s been present enough so I can smell it and almost taste it in my mouth. I’ve had those words, “Palliative chemo” uttered to me, but only in response to a What If question (“What if this treatment protocol we’re about to start doesn’t work?” . . . “Palliative chemo.”) I smelled death around me for the sixteen days back in May 2012 when we thought his cancer had come back for a third, and final, time. Just enough so that I’ve vacillated between two equally horrible extremes: One in which, in strange moments of calm, I could almost allow a slow but steady acceptance to seep through me. I could say to myself, “Okay.  This is coming. This is really and truly happening. And we will make it the best, most peaceful and most comforting death ever. And then we will pick ourselves up and we will move on. We will be okay.” And as soon as I’ve dared to allow such traitorous thoughts into my mind, they are knocked out with pure and absolute refusal. This thing will not happen. I refuse to allow it to happen. “No, you will not take my child. I WILL NOT let this happen. I will fight, scream, beg, plead, claw my way to him and I will hold on with a grip so tight that nothing, no one, will be able to pry him from my arms.”

I imagine Kat and Eric go through that particular roller coaster ride several times each day now, as they watch their seemingly healthy daughter run around the playground, perform in the kindergarten concert in full princess attire, squabble with her friends over toys. And yet they know, they know what is coming. What might strike on any given day. Death is lurking in the shadows, hovering over their shoulders. And if they fight it, refusing to allow it to come into full view, then I wish them all the strength and luck in the world. And if, given their sad reality, they accept their fate with broken hearts, then I wish them all the strength and luck in the world.




This might be part one in a series titled Death in the Age of Facebook, about which I have a fair amount to say.  But let’s start with this:

Positive thinking does not cure cancer. A good attitude will not help you survive.

It’s a lovely idea, of course, one that makes us feel like we have a tiny bit of control over our destinies. Be strong, keep your chin up, and this too shall pass. Only that’s not true. And not only is it not true, but it’s harmful and hurtful to those who don’t survive, those whose cancers simply can’t be beat with a smile and a sunny outlook.

Look at the language we use around cancer: This person “succumbed” to the disease, while that other one “overcame” it. Patients are warriors fighting a battle that requires strength and courage, a willingness to charge forward and face any challenge, no matter how terrifying and no matter how futile.

There is a lot about Facebook and social media that is wonderful when you’re faced with a crisis. You’re able to connect with others who’ve experienced what you’re going through, you’re able to share information in an honest and direct way with large numbers of people, and you’re able to draw strength and love from the strength and love of those around you. The online response, even if it’s just the click of a Like button, can be overwhelming and heart warming. It’s a sign of the invisible thread that ties us all together, caring about one another, wishing each other well.

But it also gives us a glimpse into how differently people handle the tragedies that befall us, tragedies like death sentences for five-year olds. Now, I know these are treacherous waters to wade through, that no one truly has the right words, that no one can take away the pain and suffering of the family, no matter how badly they may want to. And I know that any of us might say the wrong thing at the wrong time, in a misguided attempt to be helpful.

But one thing that I wish no family would have to bear is the idea that they should “keep their heads held high” and not “give up.” As if they themselves, their grief and their despair, are somehow responsible for their lack of options. Sometimes, as horrid as it is, there simply are no options. Or no good options at least. Now I’m not saying give up; I believe in holding on to hope until the very last second. But be sad. Let your head hang down and cry when you need to because this is devastating. There is no “chin up” attitude that can bolster a family faced with this reality, no “rah rah” mentality that can keep death at bay.

Although I sure as hell wish there was.



Oh, I haven’t written in ages. Not that I don’t have things to say — I always always do — but the longer I go without blogging, the harder it is to start again. I’ve thought a few times this month about writing, but the days go by and it doesn’t seem to happen. And then, something strikes that simply needs to be addressed.

And this time, it’s Justin.

Justin Miller was one of the five 2012 St Baldrick’s Ambassador Kids, alongside our own Austin, and I felt a bit like I knew him. He’s a few months older than Braedan, could be his classmate if he lived nearby. He was diagnosed young, at age 3, with a neuroblastoma that was bad enough for doctors to give him a 30% chance of surviving five years. He did survive five years, then six and eventually seven. But after relapsing time after time after time, he passed away yesterday at the age of ten. 

Of all the Ambassador Kids we’ve watched and followed over the years, Justin is, by far, the one with the biggest personality. He was all boy, obsessed with Legos and being a cancer-fighting ninja. He never backed down from a fight against his arch-enemy cancer, rising up and saying, over and over again, “Let’s do this thing.” He became a bit of a cancer celebrity, especially when he represented St. Baldrick’s at the 2012 Stand Up To Cancer telecast, hobnobbing with the rich and famous.

I have to admit that I was a tiny bit jealous when I saw him there on that stage that night. I was watching the show on TV as they announced the exciting (and necessary) new partnership between Stand Up To Cancer and St Baldrick’s, and out walked Justin with someone famous at his side. They showed his video (here) and I thought, for just the quickest little second, “Why didn’t they choose Austin for that role? He plays with Legos too!” Well, the reasons are many why they didn’t choose Austin: first and foremost, he never ever would have stood on that stage and addressed those thousands of viewers with such poise and humor and confidence. (Can’t you just see little Austi, burying his head into my shoulder and refusing to even glance at the cameras?) But there are other reasons too. Like that Austin & Co. had been the poster children for St. Baldrick’s that year and you gotta spread the attention around. And then there’s the biggest reason: Austin was fine, we were done, and Justin was not. As his mother says in that video, his life depends on every single new advance the scientists make; he relies on the research that will come out tomorrow; he needs every additional dollar of funding to go to pediatric cancer. Needs.

I’ve always felt a bit guilty for that fleeting moment of jealousy, especially when St Baldrick’s shared the news of Justin’s sixth relapse. And then the relapse after that. I knew I would give up any bit of recognition or celebrity or red carpet excitement to have what I have: my child, who will stay after school today to practice his running round-off back handspring combination for next week’s talent show. My child, who will snuggle down in bed next to me tonight to read a story. My child, who is, above all else, present in my life.

I hurt for Justin’s parents today, for his sister, his family and his friends. We “fans” might think we’ve lost something too, but our sadness is nothing, nothing, compared to theirs. We didn’t act fast enough for Justin. The world couldn’t get enough funding into the hands of enough doctors to produce enough new research to give Justin one more fighting chance. So let’s act fast enough for the next kid.

As Justin would say, “Let’s do this thing.”

Today is World Diabetes Day. I’m not quite sure what that means and I wouldn’t have known it even existed if it weren’t for my Facebook group of friends with type 1. I’ve only ever met one of these “friends,” the older sister of a forever friend and one of only two people with diabetes that I knew when I was diagnosed nearly twenty-eight years ago.  But I like some of them quite a lot, more because we share political views than because we share a disease.

My life as a diabetic has been an interesting one, mostly because I don’t think about it all that often. Not that I don’t think about the practical, every day aspects of diabetes, because I most certainly do. I think about them all day long and even sometimes in the middle of the night. I test my blood at least six times a day, make adjustments before and after every workout, mentally calculate the insulin to carb ratio of every single thing I put into my mouth. But I rarely think about the philosophical or psychological aspects of diabetes, the why-me or how-has-this-made-me-who-I-am aspects. It just is who I am, yet another descriptor in a long line that includes friend, mother, sister, daughter, teacher, writer, athlete, runner, political activist, fundraiser, blogger, traveler, reader, cook, field hockey lover, laundry-folder, and on and on. It is not the first thing, nor probably even the fifth thing, that people discover upon meeting me. I don’t intentionally hide it from anyone but there always end up being people who’ve known me for months or even years who will one day see my pump and say, “What is that thing?” completely unaware that I rely on this little marvel of technology for life-saving insulin every minute of every day.

I wonder sometimes about how Austin will define himself down the road. Will “cancer survivor” be top of the list or a mere after-thought? The sort of thing people learn only when they see him without his shirt for the first time or if they happen upon old childhood photos? I don’t think he’ll hide it, as self-consciousness has never entered this boy’s repertoire. But I could see him shrugging and smiling flirtaciously at the stares of friends (he’s gonna work that scar, I just know it): “Oh that? Yeah, I had cancer when I was little.” When I was little . . .

So, anyway, Happy World Diabetes Day to all.

April 2020


April 2020