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

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

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

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

 

 

Below is a repeat post, first published on April 22, 2009, describing the day, exactly 25 years ago, that I was diagnosed with diabetes. Twenty-five years of living with a potentially life-threatening disease and, well, so far so good.

April 22, 1986 was a Tuesday. I had just finished last period gym class and was in the locker room with my 7th grade gang of girlfriends deciding whose house to go to after school.  This decision usually involved three factors: whose house followed the same walking route as wherever our gang of boyfriends was headed, whose house had the best snacks and whose mom didn’t mind when her home was invaded by twelve giggling girls. (We did not travel light in those day.)

I, so often the ringleader, shook my head and said, “Can’t. I have a doctor’s appointment.”

“Again? You had one last week! Is this about that thing in your eye again?” asked one girlfriend referring to an unexplained stye the week before.

“No, my mom thinks I have diabetes.” I said this casually because I didn’t really think it could be true. I suppose if I had thought about it carefully enough, as I would years later, I’d have been able to admit that I wasn’t myself lately. I was tired and cold, lacking some of my usual tom-boy-but-girly-girl, jock-in-cute-clothing energy. I didn’t feel like myself. But I still didn’t think I could have that.

“No WAY!” Sarah shouted, suddenly all riled up. “My sister has diabetes. There is NO WAY you have it.”

There, she was clearly an expert. Pit her against my mother and her dog-eared Dr. Spock book. So what if I’d been chugging through the week’s supply of milk by Wednesday? So what if I’d gone from already thin to downright gaunt? Sarah knew what she was talking about.

But I parted ways with my friends and trudged on home where my mom and my six-week-old brother escorted me to our pediatrician’s office. I guess I wasn’t really surprised when he walked through the door, after checking the results of a quick finger prick blood test, placed his hands squarely on my knees and looked me in the eyes. This grandfatherly man, who I’d known all my life, now on the verge of retirement.

“Does diabetes run in your family?”

“Nope.” Still casual.

“Well, now it does.”

That was the first time a doctor’s words changed my life.

He told us to go home, pack a bag and head to Rainbow. All of this sounded fine to me until he said I’d be in the hospital for five to seven days. That was not okay.  Chronic disease or not, I had a school dance to go to on Friday afternoon. And hospital or not, I had a boy to slow dance with.

But–doctor’s orders, so home we went and, while my mom fixed dinner for my brothers, I packed my bag with a phone cradled under my ear, calling as many girlfriends as I could manage. Most were shocked, one cried, my best friend’s brother thought I was kidding. More than one asked, “But what about Friday?” This dance was no small matter.

My dad came home from work early and we headed down to Rainbow Babies’ & Children’s, a hospital that would become my second home more than two decades later. The four of us boarded the elevator — 13-year-old me, consumed with the horrors of missing the school dance, my parents, consumed with the horrors of having a suddenly sick child, and my baby brother, strapped onto my dad’s chest in what we now know is a Bjorn but what they then thought was a “Snugglie.”

Now this next part I don’t actually remember, being as consumed as I was with above-mentioned horrors, but my mom told me about it many years later. The elevator door opened before we reached our floor to let on a boy, just about my age, except that he was in a wheelchair. And he was bald.

You know what they thought. My parents, whose world had turned upside down, who were overwhelmed with shock, fear and worry . . . you know what they thought. It’s what most of us would think.  At least it’s not cancer.   They leaned into each other, in their safe corner of the elevator, and they knew. They knew that we could do this. They knew that we would be okay.

And we were, but I’m not there yet. Minutes later we were settling into my room, answering question after question from doctor after doctor and nurse after nurse and intern after intern. And every single time someone new walked in, my mom would announce, unasked, unprovoked, that I had gotten my first period the week before. Can you say mortified? This could not possibly be relevant! I would scowl and hiss, “Mah-ahm,” turning that simple short word into two truly mortified syllables.

She said it hopefully, as if she actually expected some doctor to throw his clipboard into the air and exclaim, “Oh, that explains it! The ol’ first period-diabetes diagnosis mix-up again!”

No such luck there. Instead I stayed in the hospital for five days, learning how to test my blood sugar and count my carbs and administer my shots. My parents and brothers had to learn too, how to spot a low-blood sugar reaction and what to do about it, what it felt like to give and get a shot. We went around the room, first practicing with saline-filled syringes on oranges and then on each other’s arms. Take that, brothers, who were mostly concerned with whether or not they could still eat donuts on Saturday mornings.

But we all learned and we all made the necessary life changes and we took it in stride. I took it in stride. Right at that moment when I gaining some independence from my parents, diabetes just became another part of taking care of myself. It just became another part of who I was, who I am.

And don’t worry, I didn’t forget: The hospital granted me a two-hour leave of absence on Friday afternoon and my parents picked me up in the minivan and dropped me at my middle school for the dance. I mean, THE dance.

And yes, I got my slow dance.

Aw shucks, thanks everyone.  It was a pretty incredible story, especially the fact that I first wrote about that license plate on the CarePage a full five months after the last time I’d seen it and then it was spotted again by friends within one week.  (Make sure you read the comment from Linda Yonkers on the last post.) And then it hasn’t been seen since! That was remarkable.

You know, I tend to be a very reality-based person, without much faith in, well, faith. But there have been strange — some would say mystical — happenings since all this began. The entire license plate fiasco was, without question, the most powerful of those. But there was also that moment, at least two years ago now, when I was sitting in the rocker nursing Austin and thinking about a title for my not-yet-written book. I’d been mulling the “Whoosh” idea, after the many CarePage messages sent by my friend’s mom, embodying our wishes being sent off into the universe. It also seemed to capture the idea that we had so quickly and completely gone from a happy, healthy, normal life to one anything but, and then, whoosh, back again. And as I was sitting and rocking and pondering all this, I glanced down at my boy who had fallen asleep in my arms and there, emblazoned across the chest of his pajamas, was a tiny airplane and the word, Whoosh.

Those faded pale blue pajamas are one of the few pieces of clothing I haven’t passed on to the sons of my friends, but have instead kept in a careful pile of “things to save forever.”

Oh, there were more, some tiny. Like when I once incorrectly referenced e.e. cummings in a CarePage entry that should have said Robert Frost, and the very next day as I was listening to NPR, a reporter was introduced as “Bob Frost.” And I first thought, “That’s weird. Someone really named their kid Bob Frost?” and then I suddenly gasped and hurried online to correct my non-English major gaffe.

Some were just creepy coincidences, like a few days after we learned of that new (but actually old) tumor in his left abdominal cavity, the “almost relapse” of March-April 2009, and one night Austin woke up crying in his bed. I walked into his room and he was writhing about, eyes still shut, and he mumbled, “Cut the piece out!” He’d been playing with scissors that evening, cutting paper into tiny pieces (one of his favorite activities to this day) so I’m sure it was that but still, I nearly died to hear him say those words. We hadn’t told the kids anything yet at that point. I hurried back to our room and shook Mark awake and said, “Do you think he knows? Do you think he can feel it inside of him?”

So, I guess I can just say that the world is full of mystery. And I’m okay with not having all the answers.

On another note, I do plan on writing more. I haven’t done anything to my manuscript since last summer, not like “this past” summer but last last summer. And even that was just some quick revisions in an attempt to add in the “almost relapse” weeks. So now I need to sit down with it and figure out how to include another six months of intense treatment without writing a 600-page book. Hard enough to convince agents and editors to take on the oh-so-uplifting topic of childhood cancer without making it a tome.

My mom and I have signed up to go to a big writing conference in New York City in the end of January, so I have three months to really pull this together. My mom, you may remember, has been working on a  young adult/middle grades novel for more than a decade and she just finished it last week. It’s about a girl who is diagnosed with diabetes, based, of course, on me , complete with a Jenny character and a Sarah/Dallas/Keila composite character and the requisite “Zach,” better known to anyone who attended Roxboro in the mid-eighties as Josh.  (Check out this old post to see what those days were like.) My mother had to assure me fifty times over that it wasn’t actually me and my life and my conflicts that she was writing about and when I read the first few chapters, I was finally convinced of that. The framework of my family and social (and medical) life is certainly recognizable but it is definitely fiction. I’m eager to read the rest though and to share it with those of you who were along for the ride.

Anyway, I know you logged on to see those darn treehouse pictures but I’ve been waiting and hoping for them to finish before I “reveal” it. Doesn’t look likely before Friday so I promise (really!) that I’ll post some tomorrow.

My first published essay is in this month’s Diabetes Forecast, a magazine distributed by the American Diabetes Association for people living with diabetes. (I once saw it described online as a magazine for people “suffering from diabetes,” but that is thankfully not the official line.) I’ve been checking their website for the past week, waiting for the May issue to hit the virtual stands and it was finally updated today. So I felt pretty excited as I scrolled through the table of contents, looking for my name and there it was, “The Best Advocate” by Krissy Dietrich Gallagher.

So I clicked on it and I read it, my very first real published piece of writing, . . . and I was so disappointed!

I knew they would make changes, of course, and the editor and I had already gone back and forth, back and forth many times via email trying to nail down the right angle. It was a fascinating process because what I set out to write was a piece about how Austin’s cancer has helped me understand and appreciate what my diabetes meant (and means) to my own parents. That cancer-patient-on-the-elevator story was my jumping off point, the thing that so perfectly linked our two diseases.

So I crafted an essay around that story and was pretty pleased with it. Then when I was informed by the magazine that they wanted to publish it, the message made it sound like my original was too long (which, knowing me, it probably was). So I edited it down and weeded out some extraneous details and sent it back. Well, the next message I received was nothing but confusing; this woman was hemming and hawing and definitely trying to say something without coming right out and saying it. I began to wonder if maybe they didn’t like my writing at all, when it finally hit me: This is a magazine for people with diabetes . . . and my original essay had a very strong “You should be thankful you have diabetes when you could have cancer, lucky you” message to it. Obviously not the message they wanted to promote! 

I felt much better when I realized that (and even a little embarassed that I hadn’t realized it sooner) and rewrote the essay yet again. This is the draft I thought would be printed in the magazine and which I was happy enough with:

Nobody cares as much about my diabetes as my parents do. Nobody worries more about complications, works harder to improve medical research, or pins more of their hope on a cure than they do.  I am now a 35-year-old adult with a family and life of my own, and my mother still reads every diabetes magazine cover to cover, tearing out articles for me and leaving them in a stack on her kitchen counter. My parents still attend all the local conferences of doctors and researchers discussing their work, often in scientific terms they don’t understand. My parents still want nothing more than for my life to be happy, healthy and “normal.”

When I was diagnosed with type one diabetes at age 13, I thought it affected no one but me.  I never stopped to consider what it meant to my parents.  I never imagined what it might feel like to watch their vibrant and athletic daughter stick herself with needles or test her blood four times a day.  Or what it might feel like to worry about things they had never before considered: kidney failure and blindness, amputation and severe low blood sugar. Their world changed too on that day. 

After the birth of my first son, I slowly began to understand what my parents might have felt upon my diagnosis. I suddenly knew the overpowering urge to protect your children, keep them out of harm’s way, smooth their path in life. But it was only an abstract inkling; my child was healthy.

And then I had another child.

And then that child had cancer.

My second son Austin was diagnosed with cancer in both his kidneys at the age of ten months. The same children’s hospital that had treated me so many years before quickly became our second home, as we spent forty-nine nights there, filled with the worry and disbelief and fear that my own parents had felt, multiplied times one thousand. I was forced to look anew at what my diabetes meant and means to them. And I finally understood. I now know about poring over research. I know about pinning all one’s hopes on a different outcome, a good test result, a better life. I know that there is no advocate for eradicating disease as powerful as the parents of a patient. I know that little movement towards a cure or more effective treatment or possible prevention would happen without the constant push and plea from parents. I know that no one cares more about my son living a happy and healthy and normal life than my husband and I do.

And I now understand the pride and awe my parents must feel when I accomplish great things, whether running a marathon or birthing a child. I feel that same pride and awe when I watch my Austin run, climb, jump across the backyard. At age thirteen, I embodied an innocent and optimistic spirit, a belief that I could do anything, diabetes or not. And as a survivor at age two-and-a-half, my son embodies that same innocent and optimistic spirit, a belief that he can do anything, cancer or not.

And he’s right. He can.

Anyway, the “real” one can be found here. It’s not that it’s awful or anything, or even very different from this one, which was already very different from my first and favorite version. But it just doesn’t have my voice. Oh well, a lesson in the “industry,” I guess.

April 22, 1986 was a Tuesday. I had just finished last period gym class and was in the locker room with my 7th grade gang of girlfriends deciding whose house to go to after school.  This decision usually involved three factors: whose house followed the same walking route as wherever our gang of boyfriends was headed, whose house had the best snacks and whose mom didn’t mind when her home was invaded by twelve giggling girls. (We did not travel light in those day.)

I, so often the ringleader, shook my head and said, “Can’t. I have a doctor’s appointment.”

“Again? You had one last week! Is this about that thing in your eye again?” asked one girlfriend referring to an unexplained stye the week before.

“No, my mom thinks I have diabetes.” I said this casually because I didn’t really think it could be true. I suppose if I had thought about it carefully enough, as I would years later, I’d have been able to admit that I wasn’t myself lately. I was tired and cold, lacking some of my usual tom-boy-but-girly-girl, jock-in-cute-clothing energy. I didn’t feel like myself. But I still didn’t think I could have that.

“No WAY!” Sarah shouted, suddenly all riled up. “My sister has diabetes. There is NO WAY you have it.”

There, she was clearly an expert. Pit her against my mother and her dog-eared Dr. Spock book. So what if I’d been chugging through the week’s supply of milk by Wednesday? So what if I’d gone from already thin to downright gaunt? Sarah knew what she was talking about.

But I parted ways with my friends and trudged on home where my mom and my six-week-old brother escorted me to our pediatrician’s office. I guess I wasn’t really surprised when he walked through the door, after checking the results of a quick finger prick blood test, placed his hands squarely on my knees and looked me in the eyes. This grandfatherly man, who I’d known all my life, now on the verge of retirement.

“Does diabetes run in your family?”

“Nope.” Still casual.

“Well, now it does.”

That was the first time a doctor’s words changed my life.

He told us to go home, pack a bag and head to Rainbow. All of this sounded fine to me until he said I’d be in the hospital for five to seven days. That was not okay.  Chronic disease or not, I had a school dance to go to on Friday afternoon. And hospital or not, I had a boy to slow dance with.

But — doctor’s orders, so home we went and, while my mom fixed dinner for my brothers, I packed my bag with a phone cradled under my ear, calling as many girlfriends as I could manage. Most were shocked, one cried, my best friend’s brother thought I was kidding. More than one asked, “But what about Friday?” This dance was no small matter.

My dad came home from work early and we headed down to Rainbow Babies’ & Children’s, a hospital that would become my second home more than two decades later. The four of us boarded the elevator — 13-year-old me, consumed with the horrors of missing the school dance, my parents, consumed with the horrors of having a suddenly sick child, and my baby brother, strapped onto my dad’s chest in what we now know is a Bjorn but what they then thought was a “Snugglie.”

Now this next part I don’t actually remember, being as consumed as I was with above-mentioned horrors, but my mom told me about it many years later. The elevator door opened before we reached our floor to let on a boy, just about my age, except that he was in a wheelchair. And he was bald.

You know what they thought. My parents, whose world had turned upside down, who were overwhelmed with shock, fear and worry . . . you know what they thought. It’s what most of us would think. At least it’s not cancer. They leaned into each other, in their safe corner of the elevator, and they knew. They knew that we could do this. They knew that we would be okay.

And we were, but I’m not there yet. Minutes later we were settling into my room, answering question after question from doctor after doctor and nurse after nurse and intern after intern. And every single time someone new walked in, my mom would announce, unasked, unprovoked, that I had gotten my first period the week before. Can you say mortified? This could not possibly be relevant! I would scowl and hiss, “Mah-ahm,” turning that simple short word into two suddenly vicious syllables.

She said it hopefully, as if she actually expected some doctor to throw his clipboard into the air and exclaim, “Oh, that explains it! The ol’ first period-diabetes diagnosis mix-up again!”

No such luck there. Instead I stayed in the hospital for five days, learning how to test my blood sugar and count my carbs and administer my shots. My parents and brothers had to learn too, how to spot a low-blood sugar reaction and what to do about it, what it felt like to give and get a shot. We went around the room, first practicing with saline-filled syringes on oranges and then on each other’s arms. Take that, brothers, who were mostly concerned with whether or not they could still eat donuts on Saturday mornings.

But we all learned and we all made the necessary life changes and we took it in stride. I took it in stride. Right at that moment when I gaining some independence from my parents, diabetes just became another part of taking care of myself. It just became another part of who I was, who I am.

And don’t worry, I didn’t forget: The hospital granted me a two-hour leave of absence on Friday afternoon and my parents picked me up in the minivan and dropped me at my middle school for the dance. I mean, THE dance.

And yes, I got my slow dance.

                                Mark, Austin, Krissy & Braedan, August 2008

I am the luckiest.

I have a family who stands beside me, backs me up and cheers me on. I have a rock solid relationship with my rock solid husband Mark. I have friends who encircle and enrich me. I have a strong and healthy and able body, despite having had type 1 diabetes for twenty-three years. I have enough money for everything I need and most of what I want. And I have two little boys, Braedan and Austin, who fill me with delight and wonder every single day.

But Austin is not the luckiest. Diagnosed with bilateral Wilms’ tumor, cancer in both kidneys, in July 2007 when he was just ten months old, Austin has been forced to endure more horrors in his short life than most of us ever will. But he is a survivor. After eight months of treatment, he has been in remission since March 2008.

The months, and now years, following his diagnosis have taught us a lot . . . about fear, hope and strength, about each other, ourselves and our boys, about life, luck and love.

And I’m ready to share.

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