Some Kind of Normal

by Heidi Willis

  "The body accepts the new pancreas. It works, but not well enough that the diabetic can stop taking insulin altogether."

  "What about the baby teeth thing?" I say, switching gears easily.

  "We can't use her baby teeth. I've told you that. But it might lead to something else. I'm still researching."

  "When?"

  "I can't tell you when it will be, or if it will be something at all. I'm trying here just as hard as you, Mrs. Babcock." As I cool Ashley's head now with a washcloth, hopelessness fills me. Every road is a dead end.

  ~~~~

  I lost Logan when he was four in a Wal-Mart. We'd gone to get the kids' Christmas pictures taken, and Ashley was in the cart in a red velvet dress. Logan walked up and down the aisle with me hunting for ingredients to make sugar cookies. While we were sorting through the cookie cutters choosing shapes, I noticed Logan had a plastic candy cane in his chubby fist--one of the big clear things full of red and green chocolate candies.

  "Where the Sam Hill did you get that thing?"

  "Can we buy it, Mama?"

  "No. Where'd it come from?"

  He pointed to the end of the aisle. I swung the cart around to return it, and Ashley reached out at the same time to grab an angel cutter. The entire display cascaded to the floor. Ashley squealed and clapped her hands as I looked at the dozens of brightly colored shapes around the cart.

  "I'll pick 'em up. You go put that back. Straight there and back, you understand?"

  Logan nodded solemnly and took off for the display. I sighed and knelt to put the cookie cutters back in their box. When I finished I stood and looked for Logan. He was gone.

  "Dadburnit. Now where'd he go?" We high-tailed it to the end of the aisle. There was a cardboard display with 24 holes for the plastic candy canes. Not one was missing.

  I looked around but he wasn't there. I kept walking, looking down each aisle but he wasn't there. My heart started beating a little faster as I reversed direction and went the other way. Still no Logan. I started calling his name, quiet at first to not draw attention to us, but then more loud. Customers stopped to ask if I needed help and they, too, fanned out, looking. Someone brought me the store manager.

  "Is there a problem?"

  "I lost my son. He was right here, and then he wasn't. He's four, about this high, brown hair, brown eyes. He's wearing black pants and a red sweater with a reindeer on it."

  He spoke into a walkie-talkie, sending employees to the toy section and the front doors and soon lights were going off and the intercom was announcing a Code Adam and everything shut down.

  They found him in the shampoo aisle, frightened and wondering how he'd gotten turned around.

  For months after that I had dreams about losing him, waking with that awful pit in my stomach. Even though I knew it was a dream, I'd sneak into his room in the middle of the night and put my hand on his back to feel him breathing, just to make sure.

  The dreams went away before he turned six, and I stopped checking that he was breathing every night. And in those little acts of negligence, I lost him all over again.

  ~~~~

  Chapter Eighteen

  I started having the dreams again, except in the new ones it's Ashley I've lost. She's in a hospital gown, and I take her into the store to find medicine and she disappears on me. No matter which way I go, she's always just out of reach.

  I fall asleep in Ashley's room and a nurse wakes me up.

  "Mrs. Babcock?" I feel her hand on my shoulder and I'm suddenly alert.

  "What happened? Is Ashley okay?"

  "I think you were having a nightmare. You were calling for her." I feel my cheeks get hot, but she goes back to Ashley's chart without blinking at my discomfort. "Lots of people talk in their sleep. Especially around this place."

  She's new on this floor, and I haven't quite gotten used to her briskness. Her name is Ingrid, and she speaks with a heavy German accent that I sometimes have trouble understanding. She takes Ashley's vitals a little roughly. She takes her temperature and blood pressure and writes them on the chart. She pricks her finger. Ashley murmurs in her sleep and then is quiet.

  "What is it," I ask.

  "465. Holding steady the last few days." I don't tell her I already know this, that I know every number the last two weeks. "You should go get rest," she says. "She'll sleep all night, and it looks like you have a big day tomorrow."

  "What's tomorrow?" I have a sudden mental picture of them yanking the pump off Ashley with the same ceremony of pulling the plug on a coma patient.

  "I don't know what's going on, but your doctor left a note in the chart." She hands me the paper.

  Tell Ashley's mom to go home and get sleep. Tomorrow is a big day. We start plan C.

  My heart beats faster. I laugh at the thought that Dr. Benton knows I am here and that the McDonald house has become home, but mostly I laugh because there's finally a plan C.

  After hours of questions, thousands of Google hits searched, an entire notebook full of ideas, Dr. Benton has found a plan C.

  "Can I keep this?" I hold the note up and Ingrid grunts. I kiss Ashley on the head and whisper into her ear. "Hold on, baby. Tomorrow we find the cure."

  I've got no idea if plan C is a cure, or if it will even work, but I don't let myself think about this as I cross the parking lot.

  There are a few families in the common room sipping coffee and chatting. They could be anywhere, friends trading stories over Folgers decaf. I wave but don't stop.

  Our room is dark already. The blinds are closed, the lights out, and I see Travis's body under the covers. I slip out of my clothes and into pajamas and slide into bed next to him. It is only the third or fourth time we've slept down here together in the last month.

  We have always kept an invisible line down the bed. His side. My side. We each needed that space of our own, but tonight the space is too big. It's been too big for a long time.

  I scooch over and rest my arm alongside his. He stirs, so I turn on my side and whisper, "Are you awake?"

  "Sort of."

  "We have a plan C." It sounds ridiculous when I say it out loud, like we are secret agents planning some covert operation, but immediately he turns towards me and props himself on his elbow.

  "What is it?"

  "I don't know. Dr. Benton left a note for us at the hospital." I am so excited my voice is shaking.

  "Do you think it's the doctor that is flying in tomorrow? It must be that. Do you know anything about him? What did the note say?"

  "Just that tomorrow starts plan C."

  He considers this. "You can't get your hopes up too much about this, Babs. We don't have any idea what this is."

  "But it's something. It's something, and something is a good thing."

  "Maybe." I can tell he isn't sure. Anger flashes through me.

  "What do you mean, maybe? Anything is better than nothing, and nothing is what we've got now."

  "I don't know, Babs. You've researched everything. Dr. Benton has talked to every expert in the field. There's no known answer. No sure thing. This don't happen enough for there to be any kind of precedence." The big word slides out of his mouth like he's comfortable with big words and trying to show off.

  I know the word precedence. It's in the SAT book. It means this hasn't happened before. I know that ain't right. I know at least two people have died because they were allergic to this insulin, and no amount of science could change that. I know this, but I haven't told him.

  "Then Ashley will be the precedence. She will be the one in all them medical journals, and parents will read about her and it will give them hope."

  "I'm just saying you don't know what it is. Whatever it is, they haven't proven it will work. Maybe it's dangerous. Maybe it's experimental. Do you want our daughter to be some doctor's guinea pig?"

  "She already is." I'm out of bed now and scrambling for my jeans. "I don't get you. You give me this holier-than-thou lecture about having faith and believing, and when I finally
find something to latch onto, you tear it down."

  "I just don't want you to be so desperate you'll cling to anything, even if it's going to put Ashley in jeopardy. Do you have any idea what some of these experiments are like?"

  I pull my t-shirt on over my pajama top and pat my hand over the dresser to find the keys. "We are desperate, Travis. And she's already in jeopardy, which you'd know if you spent more than an hour with her a couple times a week." I grab my pack of cigarettes out of the drawer, stuff them in my pocket, and slam the door after me. I know I've hit below the belt on the last comment, but I'm angry and I don't care so much.

  The families in the common room look up and smile like they didn't hear anything. It's like that here. There's a lot of hushed arguments and tears and slammed doors, because there's just no leaving the stress at the hospital. All of us drag it back and aim it at the only ones who care enough to be here with us. We try to act normal, but it's no more than a house of shattered lives, and every one of us knows it.

  The back yard is quiet. Quiet meaning there's no one there, but not that it's silent, because the city is moving all around us. Though there's a fence and several lawn chairs, it don't feel like a backyard to me. Beyond the fence is the parking lot of the hospital, and too often there's the siren of an ambulance blaring through the night. Other hospitals are close by as well, so we're surrounded by tall buildings whose lights blaze all night. I sit in a chair and light up a cigarette. The ritual calms me, and after a few deep draws my hands stop shaking and my shoulders let go some of their tension.

  I miss my own house. I can't even begin to count the amount of things I miss there. I've only been back twice, and it felt like walking into someone else's life. My house, my clothes, my bed and kitchen, but not my life. When Ashley is back, I think, it will be home again. I don't let myself think of any other possibilities.

  A helicopter flies over and lands on the roof of a nearby hospital. I wonder who it is in there, and why they're in need of Medivac, and who might be speeding through the streets of Austin to arrive in time to see them. Without thinking I'm praying, God let them all be safe and well. I wonder if I'll ever see a helicopter again without sending up a prayer and reliving these weeks.

  When I finish the cigarette, I crush it and bury it with my shoe in the flowerbeds before going back inside. I'm not ready to face Travis again, so I pour a cup of coffee and join the two ladies in the common room. We've met briefly before; one is cancer, one is heart problems. This is how we know each other. I am diabetes.

  "Hi," cancer says as I sit. "Rough night?"

  "The same," I say. The two women hmm, because here same is not necessarily good. "How is your son?"

  "Good. If good is throwing up and losing your hair and losing weight. Which apparently with cancer is good. We keep telling him that."

  It takes poison to kill the poison that is killing him, I think.

  "Is it working? Do the doctors think it's helping?"

  "Oh yes. We should be going home soon." She crosses her fingers like a child does. "We hope this will be our last overnight visit to Children's. It's looking good. He won't be able to play basketball in the fall, and he's more worried about that than anything, but I think this time it's going to be gone for good. There's plenty years of basketball left, I keep telling him. Plenty of years."

  "Have you been here a lot?"

  "Two years, on and off. He was only twelve when he was diagnosed. Isn't that your daughter's age? Anyway, it feels like two years of childhood stolen right out from underneath him. You'll understand. It goes by so fast. Even without the cancer, it goes by too fast to waste precious time in the hospital."

  "Did you know a Meagan? She was here not too long ago for leukemia. Her parents stayed in our room."

  Cancer sips her coffee. "Un uh. But I didn't stay here every time Jason was admitted. I stayed with my aunt for awhile. But there's only so much you can intrude on family. They have their own lives, and they don't really understand. They want to, mind you, but they just can't. And then it's just easier not to try to make them feel comfortable with the whole thing." She drifts off a bit into her coffee and stares at the wall.

  "And your son?" I ask cardio.

  "He's on the waiting list for a new heart. He's at the top of the list now. The doctor's are really hopeful there will be one soon." She seems hopeful.

  "How old is he?" The coffee is horrible.

  "Three."

  We fall into silence again. We sit drinking bad coffee until other parents begin trickling in, then we say our goodnights and go our separate ways.

  When I climb in bed again, Travis is snoring. I stay on my side of the bed and stare at the ceiling until the light from the moon between the blinds moves across the room and disappears.

  ~~~~

  In the morning Dr. Benton leaves a message on my cell phone to meet him for lunch downtown. He gives me the address for a Mexican restaurant. Travis and me leave the hospital around noon. The restaurant is a small, out-of the-way place not far from the university. My first thought is that Ashley would love it, with its bright colors and tinny music. A string of colored chili pepper lights runs from one side to the other, and impossibly big sombreros and lively sarapes cover the walls. A few college-aged kids sit in a booth in a corner, but otherwise it's empty.

  We stand for a few minutes by the fountain, waiting. I watch fluorescent orange fish swim around in the blue mosaic tile. The colors make my eyes hurt, and the trickling of the water makes me need to go pee.

  "Are you sure you have the right place?" Travis asks, which is the most he's said to me all morning. The door opens behind us, and Dr. Benton enters, a thin man following.

  "You beat us! Jack's airplane was a little late and traffic was a bear!" Dr. Benton leaned over and kisses me on the cheek in such a natural way I blush. He shakes Travis's hand and introduces us to Jack.

  "Mr. and Mrs. Babcock, this is Dr. Jack Van Der Campen."

  There's something familiar about him. His eyes. I swear I've seen him before. I shake his hand and glance at Travis, but he don't show any recognition.

  A small woman in a multi-colored skirt and white ruffle blouse motions us to a table and hands us sticky menus. Once we have chips and salsa and drinks in front of us and have ordered, I lean forward.

  "Do I know you? Have you been on TV or something?"

  The doctor smiles a barely-there smile. "I doubt it. We scientists aren't that famous."

  "Jack worked at Johns Hopkins for many years. He's been on the leading edge of diabetes research for the last decade and has some very promising results in curing type 1 diabetes."

  At the word "cure," I reach over and squeeze Travis's hand under the table. He wriggles it out and uses it to pick up his Dr. Pepper and take a drink before saying, "Why has it taken so long to find him, then?"

  "I've been out of country," Jack says, not at all acting offended. "I've just finished up a series of operations in the Netherlands, and I'm applying to start a clinical trial here in the U.S. I'd like Ashley to be a part of it."

  "Like a guinea pig?" Travis says. I stomp on his foot.

  "Not exactly, Mr. Babcock."

  "Travis."

  "Travis. What we want to do has already been proven effective and safe, both in animals and in humans. We did the surgery on 35 teenagers and young adults in the Netherlands, and a year later, 27 of them are insulin independent. The rest are significantly more stable and use far less insulin. None had any adverse reactions."

  "So, why is this the first time we're hearing about this?"

  "Because the United States doesn't take much stock in medical trials in other countries. They have to have all the paperwork in order here. They want the government agencies to oversee the process to make sure every patient is adequately protected."

  "When can we get Ashley the surgery?" This time Travis stomps on my foot.

  "We need to know more about what it is," Travis says.

  "Of course you do." The enchil
adas arrive, plates steaming and heaped with rice and black beans. For a minute no one speaks as we shuffle the chips and salsa and tortillas and drinks to make room for the plates, but we quickly fall into eating and talking resumes.

  "Even if this is something you all decide to do," Jack continues, "it's not going to happen tomorrow. Setting up a clinical trial takes a little time. Everything's been filed, but we're still waiting for the FDA to approve it, and there's no way of telling when that would be."

  Travis stabs at his food. "What exactly is a clinical trial? It sure sounds like just a fancy names for using humans as guinea pigs."

  "I assure you it's much safer than that."

  "A clinical trial is federally regulated," Dr. Benton adds. "All of the ethical and legal codes that apply to all medical practices apply. There is a carefully controlled protocol--"

  "A what?"

  "A study plan. The doctors and researches have to know exactly what they are going to do and follow it. The entire thing has to be approved and monitored by an Institutional Review Board, which includes physicians not involved in the research, as well as statisticians and community advocates."

  "That sounds like a bunch of gobbeldy-gook to me," Travis says, still not eating.

  I'm mortified, but Dr. Benton laughs and even Jack smiles a little while shoveling a tortilla smeared with beans in his mouth. "It just means there are a lot of people looking out for the participants."

  "How many people were cured?" I ask, trying to get back to what is important.

  "27 of 35 received complete independence from insulin. In essence, they are cured."

  Travis picks up his fork again and begins to separate the rice and beans. As he spreads guac and sour cream over his food he says, "I'm not real good at math, but that don't seem like much better odds than a transplant."

  Dr. Benton motions to Jack to answer. "It's slightly higher, actually, but the trial in Holland gave us great information in how to modify the process. We fully expect the success rate on the U.S. trial to be much greater."

  "And the risks?"