By Kimberly Ford
From where I sit most afternoons, on the second-floor library of my son’s new middle school, I can look out the bank of windows to the outdoor courts where Will practices basketball with his sixth-grade team. Will’s coach recently said, with a note of surprise in his voice, “You sure are one tough kid.” The coach may have been surprised because my eldest loves nothing more than math and reading. He thinks for long stretches before he speaks, an angelic look on his face. But put the kid in at point guard and you’ll rack up a couple of fouls for the good guys.
But then, this kid is surprising in a lot of ways. One Monday afternoon, a few months ago, Will and I—his younger sister and brother home with a sitter—piled into the car to see our beloved Dr. Greene. Will had been thirstier than usual. He’d been waking up to pee—five times a night. Dr. Greene is seventy-one. I’ve known him since I was four. He is levelheaded and calm and charming. I assumed this Monday would bring a little chit-chat, Dr. Greene in the bow tie he always wears, before something like, “Waking to pee? How about no liquids after seven.”
Instead, after Dr. Greene had asked about me and the kids and about Will’s basketball season and what he was reading, my favorite doctor sighed. He sat back in his chair and said, “Kimber, there was sugar in the urine sample.”
Which is when you have the first inkling that your life is going to change and that your kid’s life is going to change. You look at your twelve-year-old, who’s sitting on the high examination table looking very tall and very large but still kicking his size-nine feet like he’s six years old.
Your son asks, “What does ‘sugar in the urine sample’ mean?” and you feel sick because you can’t answer that question, and you don’t know how Dr. Greene is going to answer it, and given that your boy is sitting right there, you can’t ask the questions you want to: about longevity, about life expectancy. At this point, Dr Greene explains to Will that this really only means that he’ll have to have some blood drawn. It’s Dr. Greene who sends the order and who tells Will that sometimes sugar in the urine means the pancreas isn’t doing its job. It’s Dr. Greene who squeezes your shoulder on your way out and smiles, and it’s Dr. Greene who does not say what you want him to, which is that your firstborn is completely fine.
Dr. Greene, in fact, calls less than half an hour later, just after you’ve walked through the door and into the kitchen and begun browning the ground turkey for the tacos.
“Kimber,” he says. “Sounds like you’re cooking dinner. Are you cooking dinner?”
“Yes,” you say. “Tacos,” as if this is important.
“Here’s what I need you to do. I need you to go into another room where you can be alone for a minute.” And because adrenaline makes your hands and feet and scalp tingly, and because this does not sound good, you walk not into the dining room where the kids might hear you over the TV they’re watching, but upstairs and, for no good reason at all, into your youngest son’s bedroom.
There, Dr. Greene tells you that Will’s blood glucose level is 906. Nine-hundred-six means nothing to you then. Even when Dr. Greene says in a clear, calm voice that normal is about one hundred, the numbers mean nothing. Your pediatrician’s tone is what makes your hands and arms and shoulders start shaking. You stand there, and your knees also begin to shake when Dr. Greene tells you that you need to take Will to the hospital. Right now. You are standing with the phone pressed to your ear, wearing a slim gray skirt and high heels, and when he says he’s already arranged for a bed, you realize that a skirt and heels are not at all what you need for a night in the hospital. As he says, “Bed 302” and “North Wing of Packard,” you kick off your heels and unzip your skirt. There in your youngest son’s bedroom, the one with the dormer windows and the low, angled ceiling, you stand shaking, thinking that yoga pants are what you need for the hospital. You pull down and step out of your skirt and underwear. Dr. Greene repeats “302” and “North Wing” as your husband opens the door to your youngest son’s room. Your husband’s eyes widen. You are standing there with the phone to your ear, visibly shaking. His expression grows quizzical, a little alarmed maybe, as he stares at you, there, in your black sweater and nothing at all from the waist down.
But here’s the good thing. Your husband, Bill, heads back downstairs to tell Will, per Dr. Greene’s last instructions, to stop eating anything he happens to be eating. You follow in your black yoga pants and your black sweater, you and your husband ready to tell your three kids that actually, you need to head on over to the hospital. You worry there will be wailing and crying and small ashen faces. The amazing thing? Your three kids seem to think this is … exciting! Will, who is sitting at the breakfast bar and who feels totally fine, grins at you, curious, like this is some kind of joke. Your daughter, your worrier, gapes from you to your husband and then to her older brother who pretends, then, to faint. Will slumps over onto the countertop, his sister yelling, “That’s not funny!” and you laugh, and your husband laughs, and your worried daughter laughs along with you because this is actually very funny.
And here’s another good thing. It’s clear from the beginning that both of you—both mother and father—are going to the hospital. You need to be there—both of you—for your son, and for each other. So you do what you need to: You think of your mother, who lives two miles away but who is a psychotherapist working eight to eight, six days a week and who is not available on short notice. You do what you’ve never done before: You call her office, and when you get her machine you hang up and call a second time, a third, then again. You imagine her seated in her wing-backed chair across from the little, red answering-machine light that flashes at an incoming call. Your mother might take you for a desperate client who can certainly wait until the end of the current session. She might think you are the most persistent of solicitors. Instead, your mother excuses herself to the client seated on the couch. She crosses the room and picks up the phone, and you say, “Mom?” and she says, “Hi. I’m here with a client,” as if to underscore that she is not, in fact, available. You say, “I’m sorry, but we have to take Will to the hospital. I need you to come over here.” Of course, you could have called a neighbor. Any number of friends would have been more than happy to help. But your younger children will be less worried with the grandmother they adore. You will be less anxious if it’s your mom who is with them. Neither you nor your husband will have to come home in the middle of the night to relieve a friend who has kids of her own at home, and you’re sorry about the client, but the client will just have to understand that the night has come when you’re about to drive your kid across town to the hospital, and the client will just have to accept the fact that the people you love are going to step up.
The nights in the hospital—there are three—are long. That first night, no fewer than four endocrinologists will explain the situation: The pancreas makes insulin, the hormone that allows the body access to the glucose it needs to survive. Your son’s pancreas is no longer producing enough insulin. What they tell you, each in turn so that you can maybe just begin to understand, is that you will essentially have to become your child’s pancreas to gauge needed amounts of the hormone and to deliver those hormones to keep him alive.
It will be nine o’clock, then ten, then eleven, and you will not think, until days later, of how the idea of going to the emergency room used to sound so terrible because it always seemed like something that had to be done at night. The emergency room seemed awful because you, for one, are exhausted by nine. You are almost always asleep by nine-thirty. The idea of leaving the house after dark means not getting into bed on time, which means not being able to wake up before the kids the next day to enjoy that perfect hour alone, just you and your coffee.
At some point around two-thirty in the morning, though, when your son has been given insulin and his blood glucose has dropped to 506 and he has finally fallen asleep, you will not feel tired in the least. You will feel the need to step out into the hallway. Not because you actually need to check something on your phone, which is the excuse you’ve made, but simply because you need to step out of the room. You will walk into the hallway, and there will be your nurse, a young woman with pretty, dark hair named Erin who has had Type-1 diabetes since she was a kid and who seems healthy and kind and empathetic and who has just had a baby of her own, which instills hope that your kid might have a normal life and that Julia Roberts’s premature, post-partum demise in Steel Magnolias is not the fate of every single person with this disease.
Erin smiles at you in a way that says she understands exactly what you’re going through because, in fact, she does. She asks if you’d like a cup of tea, and you didn’t know before you stepped out into the hallway, but you do want a cup of tea. When Erin leads you to the alcove stocked, especially for parents, with graham crackers and saltines and the tea and the coffee you will absolutely need five hours from now after you’ve gotten no sleep, the little alcove and the comfort of such an empathetic person seem like a miracle. Erin says, “Can I do anything else for you?” and you shake your head and say, “No. Really. Thanks.” Then she says, “This is hard. It’s really hard. But he’ll be okay,” and you believe her.
It’s actually a little harder to believe Erin by the next morning. Not because you haven’t slept at all, but because your son starts to feel bad. It turns out that in some kids, when insulin lowers blood glucose from a life-threatening 906 to a more normal 68, the process can be uncomfortable. Your poor kid spends the whole first day in the hospital vomiting.
One of the things Bill and I learned that first day is that when you are diabetic and verging on ketoacidosis—when blood is overly acidic because the body has begun to digest its own fat stores—vomiting is not good. After Frosted Flakes and apple juice and sugar-free root beer went down and came back up, after several hours of Will throwing up yellow bile, an IV was put in his arm and he was finally able to sleep. By the end of the first twenty-four hours, he kept down half a cup of Rice Krispies. Then a soft white roll. Which meant it was time to begin what we needed to do—master the understanding and management of an extremely complex disease (there would be an exam!)—before we would be allowed to leave the hospital. I have a B.A. and an M.A. and a Ph.D. Never before had I been such a good student. By the second morning, Will and Bill and I were calculating the number of carbohydrates in the foods Will liked to eat, measuring his current blood glucose, drawing up insulin from glass vials into syringes and injecting it into the skin of his belly so that our son might have the exact amount of insulin his body needed to release glucose from his bloodstream into his system.
At some point in the high-stakes studying and care-giving and the large-scale acceptance we were having to undertake, I got a headache. I needed Tylenol, and they had it in the gift shop. I dreaded the trip. The children’s hospital gift shop, I was sure, would be horribly depressing, full of carnations and baby’s breath, Mylar balloons and mawkish greeting cards for critically ill children. Instead, its shelves were lined with colorful books and wooden toys and an array of art supplies that rivaled our local toy store. In the middle was an enormous display of stuffed animals that reached all the way to the high ceiling. Will is the only one of my three children who has ever liked stuffed animals. It always surprised me when a kid who was so athletic and so cerebral would get so excited about the stuffed raccoon my parents gave him for his sixth birthday or the plush bunny in his Easter basket when he was eight. I walked around and around the display, taking out animal after animal to feel the fur and to be certain the eyes weren’t too sad. All the while, I was sure that my twelve-year-old son would think this was stupid. He had just started middle school, his feet had just grown two sizes larger than mine, no one had dared give the kid a stuffed animal in years! Finally, I chose a fox with a velvety body and a wise face whose smile was heartening without being goofy. I swallowed my Tylenol at the cashier stand without water and hustled back to the room with a cup of tea in one hand and a glass of water for Bill in the other, the fox tucked casually under my arm.
Will sat forward from the raised back of the bed. He held both hands out. “Awww,” he said, and actually laughed a little. “Is that for me?”
I nodded. Bill handed the fox to Will who hugged it to his bare chest.
“He’s so soft,” he said.
Bill asked what he was going to name it, and Will said, “I don’t know. Maybe Mr. Fox. Mr. Fox sounds good.”
And I realized that just as Bill and I were beginning to fret about our son’s growing up and leaving us forever, just as he’d started to think maybe it wasn’t that cool for us to pick him up on campus or that certain colleges across the country sounded interesting, this disease would mean more communication and more understanding among the three of us. Diabetes meant we would get to hold him a little closer for a little longer.
* * *
Not that any of what we learned in the hospital felt like anything other than torture. Case in point: shots. No one likes shots. The idea of my son having to inject himself four to five times a day, every day, for the rest of his life, seemed like more pain than I could comprehend.
Enter my sister. When Bill and I called my mom, who cancelled her clients for the next three days, my mom called my sister. My sister, who lives forty minutes from us, on the other side of the San Francisco Bay, packed up her one-year-old, cancelled the nursing shift she was supposed to work the next day, said adieu to her husband, and came to stay with Aidan and Quentin until Bill and I could get home. Once Will had begun to feel better after that long first night and Bill and I had begun to understand hypoglycemia and lipohypertrophy and ketoacidosis, I decided it was time to run home to see my younger kids.
Who meets me at the doorstep but my sister, the nurse practitioner. In her hands are the syringes and vials of saline she’d bought at the pharmacy. With my giddy younger son and daughter at her sides and her own toddler on her hip, she announced that we were going to “inject each other!” My eight-year-old, full of nervous laughter, was so animated that he had a hard time drawing up the saline, but the kid had surprisingly little trouble popping the syringe into my belly. My daughter giggled through a self-injection. My mom—doubled over with laughter—poked the needle right into her stomach but was so keyed-up that she yanked it back out instead of holding it there for the requisite count of five, which seemed—to my little ones—like the funniest thing their grandmother had ever done.
My mom and I have always been close. My sister and I have always been close. On the drive back to the hospital that second day I had a good cry. Not because I was sad, but because I was moved. The three of us had been drawn, by my son having developed a disease, that much closer.
Of course, with this kind of medical situation, there are plenty of tears, and not all of gratitude. You will cry, and your kid will cry. And this—watching your twelve-year-old cry—is harder than measuring out strawberries on the new kitchen scale you buy because you want to be precise about the number of carbohydrates that you need to “cover” with exact dosages of insulin. The tears come, we have found, on Sunday nights, the eve of a new school week, or on the last night of winter vacation when we are all reminded—by a new beginning—that Will’s diabetes isn’t going away.
The sadness, though, is balanced by moments like the first day back to school after Will was discharged. The first day back, of course, happened to be the basketball team’s end-of-season party, replete with the cupcakes and juice that Will and I needed to attempt to “calculate” and “cover.” The team gathered around a picnic table, Coach King just beginning his commentary on the season, my son back with his gang. When he took out the small, black nylon case holding the blood glucose monitor, the other nine boys grew still. He pricked his finger then squeezed it with the other hand, waiting for a large enough drop of blood to collect. In that moment I worried that Coach King had slowed in his comments. I worried that Will was embarrassed by all the staring. I thought maybe he should have checked his blood glucose level over by me, away from the table.
At which point there came, “Cool!” from the boy next to him, one of his best friends. Will grinned at Rory. He wiped his finger on his friend’s navy blue uniform, and Coach laughed, and the boys laughed, and Will beamed. He might have ended up the happiest of them all, once he and I realized that we’d overestimated the number of carbohydrates in the snack and had injected too much insulin. His blood sugar had gone low enough that my son—none of his teammates holding it against him in the slightest—was the only player who had to have a second cupcake.
So, no, I never imagined, when my eldest child graduated from elementary school and started at his new middle school down the street, that I would be on campus every day at 11:50 to help him count the number of carbohydrates in his lunch and inject the exact dosage of insulin. I would have been angry if you’d told me last year that the novel manuscript I was close to finishing was going to be tabled for months while I became an expert at managing a complex disease I barely knew existed before Dr. Greene’s phone call. I would have been full of dread at the number of nights you told me I’d have to spend waking up to check two a.m. blood sugars. I might have been resentful if I’d known the number of days I would have to rush back to school because Will had run out of testing strips or felt “low” and the nurse’s office was locked and he thought he’d left his monitor in the art room but the art room was locked, too, and could I please come over with the spare monitor?
What I wouldn’t have known last year, because I was worried about my children in only the most abstract and dire of ways, was that there is real joy and real satisfaction in sitting here on the second story of the library. Being at my sixth-grader’s school every day was never the plan. But where I sit now, spending all afternoon at school even three months after he was released from the hospital because the baseball season is upon us and there’s no way to know how a new sport will affect his blood glucose levels, I get to watch my son walk back from the cafeteria, talking and joking with friends. I know Will better than I might have, because of his disease. I know his friends better because they come into the nurse’s office at lunch with him and they wave to me and they call me by my name and ask if they can have a roll of the Smarties they know I always carry in my bag in case Will’s levels go too low. These are the same boys who noticed one morning that Will was talking fast and slurring a little and walking “kind of funny” and that maybe he should check his blood glucose. When the number was a dangerously low 38, they were the ones who had him eat some of the candy he always carries in his pockets, one running for the nurse while the others walked him into a nearby classroom until Will showed he was fine again.
Will’s diagnosis on November 30 meant that I got to ask, on the last afternoon of spring break, “So, think you’re ready to do lunchtime injections on your own?” At which point I felt a surge of affection and love—not what I thought I would feel—when he said, “Actually I think I still need you.”
What I didn’t know last year, but I do know now, is that when the reality you don’t want becomes yours, there’s plenty of good to be had.
Author’s Note: Seventeen months after diagnosis means that life is a lot easier. I am no longer at school every day, but I make plenty of drives over when Will’s blood sugar is 389, or his pump site has been yanked out during soccer or he has run out of testing strips. Seventeen months out, there is still plenty of worry and time spent calculating and administering medication, and there are still tears.
I was, however, lucky enough to recently become VP of Research for the Greater Bay Area Board of Juvenile Diabetes Research Foundation, the leading funder of research toward finding a cure for Type-1 diabetes. What my role gives me is direct access to hope. I pass this hope on to Will almost daily. Last fall I passed some of it along to his new friend, eight-year-old Owen, who, when I asked how long ago he had been diagnosed, said: “Eight months, three weeks, and … six days.” Just last month I passed that same kind of hope along to eleven-year-old, newly diagnosed Carter. When I told him that JDRF was going to find a cure, Carter spoke to everything you need to know about the real difficulties of Type-1 when he said, “Please, please hurry.”
Updated Author’s Note: When I heard that the inimitable Brain, Child was going to feature “Not a Scary Story” four-and-a-half years after Will’s diagnosis, I got pretty fired up. I would write a quick comment about how much EASIER life is. My eldest is SIXTEEN, a sophomore soccer player who is thriving. Still, two nights ago I checked Will at 1:47 a.m. for the second time that night to find his blood glucose was 38. I could not have been more worried racing down the stairs in the pj bottoms I sleep in, panicked at the question of how long he’d been so low, at whether or not he was going to seize, of what I would do if I got back upstairs and he was non-responsive. He hasn’t been 38 since the afternoon I wrote about in the “Story.” He ended up being just fine . . . after three blood glucose checks, at half-hour intervals through the night; and more than a little worry on the part of his mom.
Kimberly Ford”s fiction, reviews, and essays have been published in The Believer, Redbook, Mothering, The Threepenny Review, and Brain, Child. Her best-selling non-fiction book, Hump: True Tales of Sex After Kids, was published in 2009. Her short story “Generation” was named a Recommended Story in the O. Henry Prize Stories 2008.
Brain, Child (Summer 2011)