Some Kind of Normal

by Heidi Willis

  At the campsite I cook chicken over the stove, but Ashley picks at it and excuses herself to go to bed. When I go in the tent, she's already half-asleep.

  "Did you test?"

  "No."

  "You gotta test, Ash. You can't just go to bed without knowing what your blood sugar is."

  "Why?"

  "Why? Why?" I can't bring myself to say why. "Because you have to, that's all."

  "It's high, Mom. And more insulin isn't going to help that, so why bother?" She rolls over and closes her eyes.

  I hunt through the duffle bag and find the meter. "Give me your hand." She does, begrudgingly. I prick and panic when the number comes up over 550. "Good mother of Moses, Ashley. It's 558."

  "Toldja," she says, and tucks her hand back under her.

  "Don't go to sleep. Don't you dare go to sleep." I pull her shoulders up so she's slumped upright like a rag doll. "Travis! Travis!" I yell, sure everyone in the campsite can hear us. In a split second he's at the tent flap. One look at Ashley, and he's running to the truck.

  "I'm calling Dr. Benton. Logan, put out the camp stove and roll up the sleeping bags and throw everything in the back."

  Other campers come over and ask what's wrong and offer to help. In less than ten minutes we have everything in a heap in the bed of the truck and are on our way to the hospital. Dr. Benton tells us to meet him there and to keep Ashley awake and make sure she is drinking water.

  This is, I'm sure, the longest three hours of my life. There's no music on the way home. No fun banter, no jokes. I sit in the back with Ashley and try to keep her from falling into a coma.

  ~~~~

  When we arrive at the hospital, a small entourage is waiting. They hook her up to IVs again, and Dr. Benton changes the insulin brand, hoping that'll buy us a little time. He pumps her full of steroids again and we wait.

  "How could we be so stupid?" Travis mumbles.

  "It would've happened no matter where we were," I justify.

  "But if we'd been home, we'd have been three hours closer."

  "It doesn't matter now," Dr. Benton says. "She's here. And we need to get her to Baltimore as soon as possible."

  Suddenly, Janise is here, hugging me and telling Travis and Logan to go home and finish the packing we started, that she'll stay with me. I don't even ask how she knows we're here; I'm so relieved to see her. It's 2:00 in the morning by the time it quiets down. Janise works the phone and pretty soon has us a new flight out and calls Donna Jean to have her take us to the airport in the morning. Dr. Benton comes in at 5:00 to tell us Dr. Van Der Campen is expecting us and will meet us there.

  The new insulin, or steroids, or the IV works, and Ashley is back down in the 200s by the time Donna Jean arrives. Her arms and legs are covered with wheels, the circly, hivy things that come from the allergy, and Travis brings her a light, long sleeved shirt and a long skirt to cover them. It won't be good to have people on the plane worried about her being contagious.

  Dr. Benton gives each of us a hug as we leave; the sun is barely up. "Will you be there, too?" I ask.

  He shakes his head. "This is Dr. Van Der Campen's baby. I have a job here. But I'll call, okay? You're in great hands."

  Janise also hugs us goodbye. "I'll pray for y'all."

  "I don't know what I'd do without you," I say.

  "Go," she says.

  I climb in Donna Jean's Suburban next to Ashley and wave through the window. As she drives away, I think this is not the way I intended on leaving.

  ~~~~

  Chapter Twenty-Five

  None of us has ever been on a plane before. Heck, a trip to San Antonio is as exotic as we ever got. Washington D.C., well, that seems all the way on the other side of the world. We talk about seeing the sights, the monuments and the museums and getting a look at where the President lives. But we all know we ain't gonna see any of that stuff on this trip. If it goes well, we'll be back. We'll be back, and Ashley will be well. We don't think about what it means if we don't go back.

  Travis packed what he could find and figured anything else we could buy there, or Travis can bring on one of his back and forths.

  Austin's a small airport, and Donna Jean finds a space right near the door. Travis hunts down a cart, and Donna Jean finds a wheel chair. Besides this latest battle with insulin, Ashley's been getting shots every day; something called filgrastin, to make her produce more blood for the bone marrow surgery, and she's complaining that they make her muscles and head hurt. This is in addition to a concoction of drugs called prednisone and azathrioprine, which are suppose to keep her immune system from attacking the few good beta cells she's got left. I'm afraid if someone lights a flame too close to her she might blow up. Surely that amount of drugs can't be good for a person.

  We check in without any problems, and when we roll Ashley up to the gate they allow us to board early. We settle her in at a window and check her sugar to make sure it's stabilizing. She drifts off before anyone else even boards the plane.

  I sit in the middle seat next to her, Travis and Logan across the aisle, and I feel nervous and anxious and not at all the way I thought I'd feel when I got to this point. This is not how I imagined it would be.

  "Is everything okay?" A flight attendant is standing next to me, watching me twist a rubber band furiously around my fingers.

  "I forgot something," I say, surprising myself. I can hardly breathe. I feel like I'm suffocating. "Can I get off for a minute?"

  She nods and tells me to make sure I bring my boarding pass with me. I'm down the aisle and off the plane, running for the security, through the gates and out the front door into the stifling August heat.

  "Donna Jean! Donna Jean!" I'm bent over out of breath by the time I get to her, my chest ready to split in two. "Wait, Donna Jean!"

  "Babs, what's wrong?" There is nothing on her face but utter concern. I'm now sobbing, the ugly snotty kind with the gasping, I'm-dying-kind of breathing 'cause I ain't run that fast since I was nine and Bobby Garson hid in the cemetery and made ghost noises at me on Halloween.

  "What if. . ." I'm wheezing. "What if. . . what if it doesn't work?"

  She throws her arms around me, a completely uncomfortable gesture for me, except I find myself hugging her back. I expect her to comfort me. To say what I need to hear: that Ashley will be fine. That in a year we'll look back on this and wonder why we didn't have faith, and marvel at the miracle of medicine and answered prayers. But she don't say any of this.

  "Then you have a whole church of people waiting to help you get through it."

  It's not the answer I want. It's so much not the answer I want that I pull back like I been slapped.

  "I can't tell you it's not possible, Babs." She took my hands. "But I do believe she'll get better. I think this is the answer you all have been looking for. And," she gives me another hug and whispers in my ear, "I hope you personally find the answer you are looking for there, too."

  She waves as she drives away, and I realize the plane is going to take off without me. I think about what she said as I'm running back through the airport. What is it I'm looking for? Ashley to get better. That's all. That's all I want.

  The last of the passengers are stowing their luggage in the overhead when I squeeze past them and find my seat again next to Ashley. Travis looks over and wrinkles his eyebrows at me. "Where'd you go?"

  "I wanted to grab some food." I'm sure my eyes are puffy.

  "Where is it?"

  "Where is what?"

  "The food."

  "Oh. I guess I forgot it." Before he can ask, the flight attendants shut the door and the plane starts rolling backwards. I make a big deal of finding the emergency pamphlet and following along with the flight attendant as she shows us how to buckle seat belts and how to put on air masks. I look around for the exit near me and avoid Travis's questioning eyes. I wake Ashley as the plane starts gaining speed and point out the window. She's always wanted to fly, and I don't want her to miss it.

  As t
he plane lifts off the ground, she's all lit up. "There's Town Lake! There's the hospital! Look how small the cars are!" Even Logan, who usually puts up a good show of looking bored, is nose-pressed to the window. When we're high enough that the clouds cover most of the view, they both settle back in their seats. Logan puts on earphones and thumbs through a magazine. Ashley falls silent, but she don't sleep. She continues to stare out the window, across the featureless sky all milky white.

  "Are you excited?"

  "Hmm." I don't know if this means she's too tired to talk or just don't feel like it. Is it being twelve, or having diabetes?

  "Is the plane what you thought it would be like?"

  "Sorta. It looks like it does in movies, only maybe with less space. It doesn't feel like we're flying though. It feels the same as driving."

  I loosen my seat belt and try to figure how to tilt the seat back. "What did you think it would feel like? Floating?"

  She shrugs but blushes a bit. "Maybe."

  I find the button to recline the seat but it does nothing. The guy in front of me leans his back so far the seat is less than a foot from my nose and the tray pops out. Ashley giggles, which is the first time I've heard this in a while, and I forgive the man.

  "What about the surgery? We haven't talked much about it since we made the decision to do it. You still think this is the right thing?"

  "It's a little late to change my mind now. We're on a plane."

  I stop fooling with the seat. I take her hands and hold them in mine. "It's not too late. It's not too late until they inject all the drugs into you. If you ever decide you don't want to do it, you say, and we'll go home."

  "And do what, Mama?"

  "Find something else. We'll find you something else. Some other drug we haven't found. Some other clinical trial that's less risky."

  She slips her hands out of mine and tucks them in the blanket over her legs, turning back to the window rather than face me.

  "You don't have to do this, Ash. Have you changed your mind?" There's a small part of me that hopes she has. I know that doing nothing is worse than doing something, but to actually choose to do something that could make this nightmare worse. . .

  "I do." She is so quiet I have to lean in to hear her over the noise of the airplane. "I have to do this or I'll die."

  Kids are supposed to think they're immortal. That's what the news tells us. That's why they do stupid skateboard tricks off roofs and drag race through town at two in the morning. They think they can't die. And so adults go around trying to pound into them that they're mortal, that they can die. And right now I wonder why. Because all I want at this moment is for Ashley to think she can't die.

  ~~~~

  Our plane flies all the way to the Atlantic and then loops around to land. We come in over the monuments, and Logan moves to our side to point out the Washington Monument and the Capital Building. "Which one is that?" Ashley asks, pointing to a large square building by a long rectangular pool of water.

  "The Lincoln, I think," Logan answers and looks at me, but I shrug 'cause I got no clue which is which. "It's the Lincoln or the Jefferson. I can't remember which is the square and which is the round one."

  We fly so low over the river I'm afraid we're gonna put down in water, but we land smoothly in Virginia, hardly any bumps at all. We let everyone gather up their stuff and leave before us.

  The airline has a wheelchair at the door, and Ashley don't fight it the way she usually does. Dr. Jack meets us at the baggage claim to take us to the hotel near the clinic. The first thing I notice when we leave is that D.C. is just as hot as Texas in August, and the air is so thick I could serve it up with jelly on toast.

  Dr. Jack don't talk much about the coming days on the drive. He points out places of interest--the Pentagon, Arlington Cemetery, the Potomac. He asks about our trip, and how we've done with the press. He says he's gotten requests from Good Morning America, The Today Show, and Dateline to do interviews and to follow the stories of a few of the participants.

  "I'm trying to get the real information out there about this. It's not as though this kind of stem cell therapy hasn't been used before. We've cured spinal cord injuries, leukemia, even Parkinson's disease. Yet I'm shocked how many people have no idea what it is. Have you ever been to a lacrosse game? We're suppose to have a winning team this year."

  I'm worried about the press. I've had enough attention to last me a lifetime. Back home, even if people could understand, they'd never get past him. Him and his past involvement with embryos. I look at him as he talks so casually and wonder if he changed his mind about embryos because he thought it was wrong to test on babies, or because it just wasn't very productive. It's not the stem cell trial that's the lightening rod, I think. It's him.

  Up to now I just been seeing him as the doctor, but suddenly I see him as a person like all of us. A mixed-up past full of mistakes and a second chance to make it better. Just because he turned away from those mistakes don't make it wrong to use the lessons he learned.

  He don't mention the article about his daughter, or the personal attacks on him. Some parts of our past, I suppose, we got to put a little further behind us than others.

  The rest of the trip, Travis and Dr. Jack banter about sports while the rest of us stare out the windows. I can't believe how many trees there are, and how tall they all are. Everything around us is a haze of green. The roads wind up and down over hills, around curves, until I think I might throw up.

  At the hotel Dr. Jack helps us haul our luggage in and tells us he'll be back in the morning for Ashley. "The rest of your life starts tomorrow."

  ~~~~

  Chapter Twenty-Six

  After Travis is asleep, I slip out and down to the pool. Logan's there, waiting. I shouldn't be surprised, but there's hardly a thing Logan does that don't surprise me. He's sitting in one of the plastic chairs drinking a Dr. Pepper and bathed in the translucent green light of the pool. He smiles when he sees me and pulls a chair from the table for me.

  "I thought you'd be here."

  I hold my hands up to him, empty. "I didn't bring cigarettes."

  He holds out his hand, one with the Dr. Pepper and one with a small package wrapped in paper. "Neither did I."

  I sit down and take the package from him. "What's this?"

  "Open it." He takes a swig of his drink and leans back in his chair, head tilted back to the sky.

  Inside the wrapping paper is a book. "1000 Most Important Words," by Norman Schur. "What's this?"

  "I figured you were about done with my SAT book, and I thought it might be time to move on to something more fun."

  Knock me over with a feather duster. "How long you known?"

  "Since you stopped looking at me crazy when I used big words on you. I figured you were getting them from somewhere. It just took a while to find out where." He takes the book out of my hands and opens it to a random page. "See? This one's much more interesting. It gives you definitions and contexts, so you know how they're used in everyday language. And it tells you where the word is from--you know, Latin or Greek or whatever--and what the parts of the words mean so it's easier to remember them and figure out new ones." He smiles smug-like and hands it back to me. "You'll blow away every educated person in Texas with a vocabulary from this."

  I flip through it, giddy that I actually know some of the words already. When I put it on my lap, Logan's already staring into the starry sky again.

  "Why do you pretend so hard you're a rebel?"

  "Why do you pretend so hard you're dumb?"

  The problem with Logan is that whenever he's being smart-mouthed, he's more smart than mouthy.

  "I don't pretend."

  "And I'm not a rebel."

  I think this would be the perfect time to take a drag, but I've got nothing to smoke. "Jiminy, I wish I'd brought the cigarettes."

  "Why didn't you?"

  I reach over and take his can and swallow half in one swill. "I don't know. I guess it seemed the rig
ht time to quit."

  The truth is, how could I possibly keep slowly killing myself by smoking when we're trying so desperately to keep Ashley alive? If there were one thing I could have done in the past to save Ashley, I'd have done it in a heartbeat to keep this from happening. I don't want someone else to be thinking the same thing someday while I'm lying in some hospital bed hooked up to some iron lung, or whatever they do to you when you have lung cancer and can't breathe no more on your own.

  "I should get back or your dad will wake up and wonder where I went."

  "Mom?"

  "Yeah?" Logan looks like he's going to ask something. He stares hard at me for a minute, then his eyes dart away like he just can't get it out.

  "Good night."

  "Good night." I'm relieved he don't ask, because I feel in my gut it's not a question I want to answer.

  ~~~~

  In the morning Dr. Jack comes to pick us up in a rental car that he says is now ours for the next week, thanks to an anonymous donor. None of us talk much on the drive over. It's not a long way, but there are a million lights and every one of them seems to be red. My stomach feels like it's being tossed around by a wave. From the looks of the rest of the family, they feel it too.

  Baltimore's a big city. The buildings are crammed together, and the streets are crowded as we wind our way through them. The building we arrive at, which Dr. Jack says is not technically a hospital but a center for clinical trials, is what the 1000 word book might call imposing. Tall, red brick, white trim, ivy climbing up the sides. He parks the car not too far from the entrance and places a blue card on the dashboard. "If you park here, you need to make sure everyone can see this, or they'll tow you."

  Ashley don't want the wheel chair, so we walk very slowly. She leans on Travis as she walks, stopping every couple yards to catch her breath. If I was a passer-by I'd think she was having some asthma attack. It's mostly that she's just tired and weak. Between the high sugars and little food, she's down under eighty pounds, way too thin for her tall frame.