Some Kind of Normal

by Heidi Willis

  "But she's not eating sugar," I interrupt. "She's hardly had anything sweet in two weeks."

  "The word sugar is a misnomer," he says, turning from Ashley to me and Travis. "Almost everything you eat has at least a little bit of it that gets turned into glucose by the body. Anything carbohydrate, like the bagel this morning, is primarily seen by the body as sugar. It doesn't matter if it actually has sugar in it or not."

  He turns back to Ashley. "But even if you don't eat, your body is producing glucose on its own. You need insulin whether or not you eat, and you aren't making any insulin right now."

  "Do I have to have surgery? My pappy had a heart attack last year, and they stuck a balloon in his veins."

  "No," he says slowly, glancing at us. "There's no surgery for this. There is no cure."

  I think these may be the worst four words I've ever heard in my life. "But the nurse said she could live a normal life. Like all the other girls her age."

  "She can." He takes a small black pouch off the top of the pile of papers he has on his lap. He unzips it and pulls out the contents one by one: a small blue machine that looks a little like a calculator without all the buttons, a fat blue pen, and a container that looks like what my camera film used to come in.

  "You now get to be your own pancreas. Since yours isn't checking the sugar levels in the blood and making insulin to cover it, you will do it yourself." He opens the top of the vial and pulls out a strip of black, shiny paper. "This is called a test strip. It will show you how much sugar is in your blood." He puts it into a slit in the top of the meter and the screen lights up. A few numbers flash across it, and then it settles into a picture of a blinking drop of blood. "That means the meter is ready," he explains. He draws an almost microscopic needle out of a pocket in the pouch and unscrews the cap of the pen. He places the needle into the pen and then lets Ashley look at it before screwing the top back on.

  "See? Tiny. You won't hardly even feel it." He takes her hand and presses the end of the pen against it. "This is the lancet. You should put a new needle in it each time you test. Then, you place it on the side of one of your fingers and--" He presses the button on the side, and I hear a slight wiz of air. Ashley grimaces and then relaxes.

  "Is that it?" She grins at us. "It didn't hurt at all!"

  He squeezes her finger slightly and a dot of blood surfaces. He holds the test strip up against it and it sucks the blood right into it. The screen changes suddenly to a countdown. 5 – 4 – 3 – 2 – 1.

  565. I feel the color drain from my face. "That's bad, isn't it?" Dr. Benton takes the test strip out and throws it into a red biohazard container. "Normally, yes. That's very bad. But it hasn't been that long since the medics started the insulin. She's come down almost three hundred points, and that's exceptionally good. Eventually, we'll get it stabilized around 100. Then, the trick is to keep it there."

  "How do I do that?" Ashley is examining her finger.

  "With insulin shots." She stops examining and looks up at the same time that Travis and I lean forward.

  "Shots?"

  "Yes. Testing is only part of the job of the pancreas. The other job is giving your body the insulin it needs to cover the glucose in the blood, or, in the case of a diabetic, the glucose they are about to eat."

  "What about pills?" I ask.

  "You can't take insulin in a pill," he says. "Insulin can't be absorbed by the stomach."

  "I see them on the commercials all the time," I say.

  "They aren't for type 1. That medication is for type 2. It helps the body use the insulin it is already making. But Ashley isn't making any."

  "Do I have to get a shot every day?" Ashley is like a rabbit looking down a shotgun barrel.

  "Several times a day. And let's be clear here, Ashley. This isn't your parents' job. They should watch you carefully, and help you out, but it's your body, and your life, and you need to be the one in control of it. That means testing your own blood, and giving yourself shots."

  She couldn't have reacted with more horror if he'd just cut open his own chest and handed her his bloody heart. "I can't give myself a shot!"

  Travis backs her up. "She really can't. Don't none of us like needles none, but it took two of us to hold her down for vaccinations when she was a young'un."

  I hit him on the arm, but the doctor ignores him.

  "You can and you will. And before you leave this hospital, it will already seem like no big deal." Neither Travis nor Ashley looks like they believed him.

  He puts aside the meter and begins laying out papers on the bed, motioning for Travis and me to scoot closer. "Before we hand you a syringe, though, all of you have to understand how insulin works. It's a tightrope you have to walk carefully. Too little, you'll be back here." He looks gravely at us. "Too much, and she'll be dead."

  ~~~~

  The nutritionist comes later with her stack of Xeroxed pyramid charts and fake plastic food. She explains that we need to measure everything out now, and know exactly how many carbohydrates are in each serving. Lean meat doesn't require insulin, but we should only eat four ounces, the size of a pack of cards, or the palm of my hand. We need to cut back on beef and other fatty meats. We have to worry about fat, because heart attacks occur at much higher rates among diabetics. Only a half a cup of mashed potatoes or a half-cup of rice, fifteen carbs. One cup of strawberries, fifteen carbs. One ounce of chips, fifteen carbs. Suddenly the entire pantry is reduced to cups and ounces and measurements of fifteen carbs.

  "Do I really have to count how many Doritos I eat?" Ashley asks.

  "It's important that you measure everything you eat before you eat it. That way you'll know how much insulin you need to cover it. If you're still hungry later, you can eat more, and take more insulin for it. The days of sitting on the couch eating chips out of the bag are over, I'm afraid."

  She doesn't look afraid at all. Ashley, on the other hand, is getting paler, and her eyes keep closing.

  "Are you tired?" I'm hoping she is so the doctors will leave us alone to digest all this information, which I don't think has any carbs.

  She manages a "hmm," and a sigh, but don't open her eyes.

  "I'll come back tomorrow, " the nutritionist is saying as she picks up her toy food. "I'll leave these pamphlets for you to look over. Here is a book that lists the nutrition facts about food sold at popular restaurants. You should keep that one in the car with you. And these other pamphlets--" She puts them on the pile of pamphlets Dr. Benton left us and stands to shake our hands. "I know this all seems overwhelming right now, but it will become second nature to you really quickly. You won't always have to measure everything you put on your plates. You'll be able to eyeball it soon, but for now it's important that it's done right. For Ashley."

  As if it would be for anyone else.

  ~~~~

  The sky behind the shaded window is dark. We survived our first day. Travis and Logan are with Ashley, who is asleep, and I send the hospitality brigade home. I barely touched their pulled pork and potato salad. All I can think of as I look at it is Dr. Benton telling Ashley, "Everything you eat is poison to your body." I try to remember what he said about fats and proteins and carbohydrates, but it all blurs together and all I remember is poison.

  When I was a teenager, a girl I babysat got leukemia. Blood cancer. They gave her chemo and all her hair fell out, and she threw up all the time and couldn't hardly walk she was so weak. I asked my mom why she was so much sicker when they were treating her than before, and she said it was because they were treating her with poison. "It takes poison to kill the poison that's killin' her," she said.

  I wonder if insulin is poison. I wonder if Ashley will get worse before she gets better. I remember how casual the doctor sounded, and the nurse, and how all normal it seemed to them. But something in my stomach tells me different. A mother listens to these instincts. We trust them more than science. Sometimes more than God. Something tells me it's going to get way worse before it gets better.

>   ~~~~

  Chapter Seven

  I step out onto the balcony where the helicopter landed with Ashley several hours ago and look across the skyline of Austin, blazing with lights of people and businesses that are going about their lives as if everything is ordinary.

  The door opens again behind me, and I turn to see Logan, his hair looking like a flame under the red exit sign. He hesitates and then walks towards me. He don't look at me but leans against the railing next to me and pulls a pack of cigarettes out of his pocket, tapping it until one slides out. He offers it to me.

  "Logan T. Babcock, what in the name of all that's holy are you doing with cigarettes?"

  "They're yours," he says without blinking, without looking at me. "I thought you might want them." He kept his eyes on the city lights. "I took them from your sock drawer before we left the house. I figured if we ended up staying overnight you'd need them."

  If I ever thought my son could shock me, I didn't imagine it'd be like this. I stare at him, but he don't look at me, or withdraw the cigarettes. I take it slowly, and he pulls a lighter from his pocket and offers me a light. I take a long drag and exhale the puff into the night air. "How long you known?"

  "A while." He says nothing more.

  "Do you smoke, too?" I try not to say it accusingly, but it's hard to reign in the motherly tone.

  "God, no. Those things will kill you."

  "Don't take the Lord's name in vain," I say, then immediately regret it. I'm glad he don't smoke. "I only have one a day," I say, as if this makes it okay. "At night. Since I was about your age."

  Logan don't act surprised, but he don't say nothing else either.

  "I gave up a lot of stuff when we joined the church," I say, as if I can justify it. "I stopped drinking and cussing. I gave up immoral TV. Shoot, your dad and I even gave up going out to lunch on Sundays. But the cigarette. . ." I can't finish, because I know there is no reason. I just didn't want to give it up.

  We stand next to each other until the cigarette is gone. I drop it and crush it with my shoe. He makes no motion to leave, so I stay too.

  "Is Ashley really going to be okay?"

  "Of course," I lie.

  "But you don't know that."

  "I know Dr. Benton says she'll be fine. And so did the nurse."

  "But he also said she could die. She has to give herself insulin, and too much could kill her."

  I think about asking for another cigarette, but I'm not sure I want to tick off God at this point.

  "They also say millions of people live with this. If people were kicking the bucket the way they are with boobie cancer, we'd hear about it on the news. There'd be fundraising walks and ribbons on car bumpers," I say.

  "Maybe it's like gang fights in LA. It's so common it doesn't make the news anymore."

  "If it were that common, we'd know someone with it. You know any kids with diabetes?"

  "No. You know any adults?"

  "No." I'm dying for another puff. I find a rubber band in my pocket and twist it around my fingers for something to do. "Well, maybe a few. But I think they all have the second kind. They don't shoot up; they take pills. And they're all fat."

  "Stop it, Mom."

  "What?"

  "The fat thing. You know how many times today you've talked about fat like it's some defect?"

  "I don't talk like that. It's just a fact. If you can't see your toes and none of the clothes at Wal-Mart fit you, you're fat. Like saying Mr. Rodriguez is Spanish or Mr. Ruben is bald."

  "Mexican, Mom."

  "What?"

  "The Rodriguezes are Mexican."

  "Isn't that what I said?"

  "No."

  "Well, anyway, all the people I know who have diabetes can't see their toes, and they still eat whatever they want, and they don't worry about how many carbohydrates are in the food, and I've never seen any of them pass out." I stop, because all I can see now is Ashley bent over on the driveway, falling, falling. I pull so hard at the rubber band that it breaks and snaps my fingers.

  "In a couple days we all get to go home, and they wouldn't let us go home if Ashley isn't going to be okay." I want to believe this as much as I need him to believe it.

  "Okay."

  "Okay what?" I'm expecting some backtalk, some sarcasm, but he just shrugs.

  "Okay, if you say she'll be fine, I believe you." He hands me the pack of cigarettes. "I'm not going to be your supplier. If Dad caught me, he'd kill me."

  He starts back to the door but stops short. "You know Ms. Brenda told me the church was praying that God will cure Ashley. She thinks she doesn't need any insulin or any special diet."

  This makes me angry enough to spit nails, but I bite my cheek. "God is using the insulin to cure Ashley. Sometimes he does that--using drugs instead of healing outright."

  "She says we just need faith."

  "Next time she says that, you tell her we have plenty of faith. We have faith that God sent us Dr. Benton and the miracle of insulin, because without them she'd be dead."

  I think he's going to talk back, but instead he takes the lighter out of his pocket and tosses it to me. "Only one a night, Mom." I nod and watch the pink Mohawk disappear behind the sliding doors.

  ~~~~

  The Ronald McDonald house is right across the parking lot, and they have one empty room all of us will have to crowd into. I don't know what I expected, but this ain't it. It's like a cross between a hotel and a house. There's a kitchen and a family room on the first floor, and when we walk in several parents are sitting around drinking coffee. One man comes over and shakes our hand and introduces himself all proper-like to us, and then introduces the others in the room.

  "This is Jim and Amanda; they have a sixteen year old son that was in a car accident. That's Torren; her baby was born with hydrocephalus-- water on the brain. And Dina has a two-year-old daughter who is having her third heart surgery." We awkwardly shake all their hands. "I'm Hank. My daughter has leukemia," he adds, like it's an afterthought. I'm uncomfortable with how we are all defined by our diseases.

  "Our daughter has diabetes," Travis says.

  "Oh," Hank says. "That's not too bad then. I don't guess you'll be here very long. It's just really an education thing, right?"

  Travis feels me stiffen and lays his hand on my back. "It's our first day," he says evenly. "I'm not sure what all will happen, but since she went into a coma, I think it's a little more than just educational." He's being nicer than I would be. I can feel my teeth grinding. "I think we'll just get to bed. Long day, you know?" He presses my back with his hand and fairly pushes me out of the room before I can open my big mouth. Logan mutters goodnight and trudges behind us. I'm sure as sugar we've embarrassed him beyond belief but I don't care much.

  Thankfully, upstairs our room is self-sufficient, with its own bathroom and necessities. I shut the door behind us with a distinct satisfaction hearing the bolt click shut.

  "I'm not staying with these people here. There's no privacy. And can you believe how they looked down on us 'cause Ashley don't need a heart transplant?"

  "I'm sure it just came out wrong," Travis says. "And anyway, we aren't going to be here long. I'll have to take Logan back to school in a day or two--he can't miss the whole week--and then you can stay in the room with Ashley."

  "I'm not going to sit around with those pompous folks all week listening to how their kids are all worse off than ours, that's for sure."

  "Wow, Mom. Pompous. That's a pretty big word."

  "Oh, shush!" I throw my bag on the bed and rifle through it to find my nightgown. "It's past midnight. Can we all just go to sleep?"

  Travis and Logan exchange looks that I pretend to ignore. Looking for my toothbrush, I pull every crumpled item out of my bag and throw it on the bed.

  Travis takes his shaving kit out of his bag and hands it to me. "The toothbrushes are in there."

  I grab it out of his hands without thanking him and slam the bathroom door behind me. I hear them talking
through the door, their voices so low I can't make them out. I drop my nightgown on the floor and screw the cap off the toothpaste and proceed to scrub the enamel clean off my teeth.

  ~~~~

  We take up just one room because in a day or two Travis will have to head back for work and Logan will have to go back to school, but even for one night it feels crowded in the room. Logan points out that we're living in a home sponsored by a restaurant whose food we are no longer supposed to eat. He calls it irony. There's a lot of iron in the burgers, but I think that's supposed to be a good thing, if I remember yesterday's lesson in nutrition right, so I'm not sure why Logan thinks this is bad. I checked the nutrition book for McDonald's for the fries and nearly apoplected over the carbs. Apoplexy is in Logan's vocabulary book: SAT list, week 3.

  Ashley is asleep when we arrive back at the hospital, and the nurse tells us it may be days before she is back to her self. I don't know which self that is because I don't know anymore if she seemed different than usual because of puberty, or because of the diabetes.

  We eat breakfast in the cafeteria. I notice smugly they serve bagels and orange juice and cereal and eggs. I'm not the only one killing people.

  Afterwards, Travis gets a paper and disappears behind the sports section, and Logan sees a pretty girl he slyly follows into an arcade room. I spread out the pamphlets and charts we were given across the table and go through them again. I shuffle the papers mindlessly, the words on the pages confusing and without meaning. Words like glycated hemoglobin, basals and boluses, hypoglycemia, ultralene, and neuropathy. There are lists. Lists of possible complications. Lists of tests and medications. Lists of foods with numbers after them. And graphs and math way past the algebra I struggled through in high school before I dropped out.

  I'm stupid about school things. I know this. And now I'm afraid it's going to kill my daughter.

  I put my head in my hands, blocking out the quiet commotion of the cafeteria, and try to pray. I think I might've fallen asleep because when a warm hand falls on my shoulder, I look up, expecting Travis to be there, but he's gone. The woman standing over me is Betsy, the nurse on duty when Ashley was admitted. She's dressed in cheerful pink scrubs with Betty Boop bee-bopping around them, but her face is drawn and serious.