by Heidi Willis
"I won't lie. There are some serious risks. Part of the treatment involves the killing of Ashley's entire immune system. For awhile she'll be extremely vulnerable."
"You're killing off her immune system?" Travis's voice is loud enough to draw the attention of the boys in the booth.
"The problem of transplants," Dr. Benton says, leaning forward over his plate towards us, "is that the reason Ashley has type 1 is because her immune system attacked her pancreas and killed the islet cells. If we just transplant a new pancreas, or even new islets cells, we have the same issue all over again. The dead islet cells are the symptom, not the disease. With this treatment, Ashley will basically heal herself, but we have to make sure we stop the immune system from putting us all back at square one."
It strikes me at this moment that I've understood everything he said. I don't know how to set the clock on my DVD player. I can't understand my oven instruction manual to set the time-bake, but I understand every word a doctor says about pancreas and islets and immune disorders. This makes me laugh, not the funny kind of laughing but the kind that turns into choking and coke coming out my nose and soon turns into tears and I have to excuse myself in utter embarrassment.
Travis follows me out, more not to be alone with the doctors than to be with me, I suspect.
"What's going on?"
"I don't want to know what he's saying," I sob, aware this is making no sense. "I want to be stupid again."
God bless him, though, Travis understands. He puts his hands on my shoulders and hunches enough to be eye to eye with me. "There ain't no going back, Babs. And Ashley needs you to be just this smart. Smart enough to know if this is the thing that's going to save her or kill her. That's our responsibility, and no one can make that decision but us."
I sniff and wipe my nose on the napkin I've carried out with me. "What if we make the wrong one?"
The air outside the cantina is stifling. Marimba music floats out the door. Travis lets go of my shoulders and straightens. "We won't. We go in and ask all the questions to get all the information we need to make the right one."
I realize I've felt like he and I are on different sides, fighting each other more than the disease. He takes my hand, and we walk in together and sit back down.
Dr. Benton and Dr. Van Der Campen act as though nothing happened. We eat for awhile, gabbing about Texas heat and European winters, and NASCAR, which, it turns out, both Travis and Dr. Benton have an affinity for. We eat until there's nothing left but a few crumbs from the chips. I haven't eaten so much in over a month. If I hadn't lost weight lately, I'd be unbuttoning my jeans under the table. As it is, I feel faintly sick.
The waitress clears the plates and brings a platter of sopapillas dripping with honey and cinnamon, and the men all order coffee. When the cups are full and the waitress is gone, Travis breaks the light mood.
"So," he says. "Tell us about this miracle treatment."
~~~~
Chapter Nineteen
We get a steady stream of visitors, and I imagine somewhere in the narthex of the church is a sign-up sheet labeled Babcock visitations. Little by little the kids have stopped coming, which is probably a good thing as Ashley is well beyond lip-gloss and blush and hardly is up for entertaining, but the women try to make it down at least three times a week.
Brenda always brings food. Pulled pork sandwiches and coleslaw. Peach cobbler. Biscuits and honey butter. Baked beans. She hands them over with apologies, knowing food is an ironic gift but the only way she knows to show her pity. If Logan is here, he sneaks it down to the cafeteria and polishes it off, and if he's lucky, makes a few friends with off-duty nurses.
Yolanda brings DVDs and board games. Gloria brings flowers from her garden. Janise brings pictures. She must spend hours every day following Ashley's friends around town and taking their pictures. She brings them in and hangs them around the room, so that when Ashley is awake she's surrounded by the people who care about her.
Donna Jean brings books; mostly books she thinks Ashley will like, and I spend hours sitting by the bed reading to her. I feel like she's five again, when we used to curl up on her bed and read for hours, her begging for more and me just trying to get her down for a nap.
There are other books tucked down in the paper bag, too. Ones for me to pass those long hours when Ashley is asleep and Logan and Travis are back at home, working, and I've got nothing to do but imagine every awful possibility.
When I come back to the hospital after lunch with the doctors, Ashley is semi-sitting up, the bag of books spilled over the covers. She's running her hands across them, shuffling them, trying to find something.
"Do you want me to read to you?" I ask, picking up the books and putting them back in the bag. Some are on the floor and I've got to get on my knees to find them.
"There's one about faith," she says.
"I don't know that one. I'll find you more of Lois Lowry," I say, rummaging through the bag.
"I want the quote book," she says, her voice airy and wispish, like she's nothing more than a ghost.
"How about Anne of Greene Gables? That was always one of your favorites."
"I want the quote one, Mama."
"I don't know that one." I try to persuade her and wonder if she's hallucinating. "How about we finish up A Wrinkle In Time?" I find the raggedy copy that's ours, the one she's read so many times the cover is hanging loose and the pages falling out. Ashley gives in, and I open to where she dog-eared the page. It's nearly finished.
I usually try to steer her away from this one. It's full of strange words; long ones I don't know and made up ones I can't pronounce. But today I'm relieved to be in a world so different than the one we're in.
Ashley lays back and closes her eyes, but I can tell she's listening. Like when she was a kid, she's in the book, in the imaginary world, playing the part of the main character. It's fitting that there's an untouchable, unknowable villain in this story, one that weakens and takes over the people that come to it. I almost tear when I get to the part where Meg's dad tells her, "But I wanted to do it for you. . .That's what every parent wants." I stop here, a lump in my throat. God, I pray, if it could be me in that bed instead of her. Ashley opens her eyes. She knows what I'm thinking, but she whispers, "Go on."
I read through another page, until I get to Mrs. Who's advice for Meg. I can't go on. Ashley, who knows this part by heart, begins to say it in her wavering, thin voice.
"The foolishness of God is wiser than men; and the weakness of God is stronger than men. For ye see your calling, brethren, how not many wise men after the flesh, not many mighty, not many noble, are called, but God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things which are mighty."
I've heard Pastor Joel read this very thing in church before. I look at Ashley, not able to get herself to the bathroom, and think about how she's confounding science. And I wish God wouldn't have chosen her.
"What did Dr. Benton say?" It's the first she's asked, and I close the book.
"He says there's a new possibility, and it's up to Daddy and I to decide if it's right for you."
"What is it? Are we going to do it?" I see the hope flickering in her eyes, and I want to say yes! Yes, we start tomorrow and this is all going to be over before you know it!
"We're considering it." That's a generous statement, seeing as how Travis stayed for ten minutes of the explanation at lunch and then stormed out the moment stem-cell replacement was mentioned.
"You can't possibly be listening to them," he said outside the restaurant as I begged him to come in. "Did you hear them? They want to do stem-cell research on her!"
"I want to hear what they have to say at least before I say no."
"Do you know who he is?"
I don't. I been trying to put my finger on it all lunch, and the fact that Travis knows him makes me feel like I'm not going out of my mind.
"He's one of the pione
ers of stem cell research." When it's clear I don't get the meaning of that, he added, "Embryonic stem cells. He takes aborted babies and uses them for science." When I don't react strong enough to that, he continued. "He lobbied congress to make it okay to use eggs fertilized for invitro treatments to grow into embryos and kill them for research."
Suddenly it dawns on me where I seen him. The posters at the rally. The ones with the scientist and the red slash through him: that was Dr. Van Der Campen.
"It don't matter," I said. "He's not killing babies today. He's trying to keep Ashley alive, and that's what matters."
"So that's what you want to do? This is nothing more than two-steppin' with the devil."
"Doctors are not the devil, Travis. The devil is diabetes, and in case you haven't noticed, it's winning this war."
He looked at me with something kin to venom. "Nothing's ever been more important to you than babies and kids. That man kills babies." He was angry, but I was angrier.
"Those babies were already dead. And if it saves my daughter, I want to hear."
"Then you're gonna have to hear alone." He stormed out and left me alone, again.
But Ashley don't know this, and she rests back, taking in the idea that Daddy and me are thinking on it. "Okay. I'm going to sleep a little."
"Okay." I pull the sheet up over her. A small book no bigger than a calculator slides to the floor. I reach down to pick it up, and she grabs my hand.
"Read this one. It's really good."
I hesitate for a moment and then take it because she wants me to. Kissing her on the forehead, I tuck her in and close the door behind me.
In the hall I look at the book. It's the book on faith she was talking about. Famous quotations about faith. When I was Ashley's age, I used to pray to God to show me something important, to talk to me. The pastor said the Bible was God's Word, so I'd pray God would speak to me, and then I'd open it randomly and point to a place on the page with my eyes closed. I usually opened to obscure books like Leviticus or Hosea and got weird verses like "If you don't run for you life, tomorrow you will be killed," or "A lizard can be caught with the hand, yet it is found in kings' palaces."
I pray the same prayer now and open the book to a page in the middle. On one side is a picture of the Grand Canyon, a miniscule person standing near the edge with his arms thrust out to heaven. On the other side is a poem by Patrick Overton. It says:
~~~~
Faith
When you walk to the edge of all the light you have
and take that first step into the darkness of the unknown,
you must believe that one of two things will happen:
There will be something solid for you to stand upon,
or, you will be taught how to fly.
~~~~
I turn the words around in my head. What does that mean? The first part makes sense to me. I've never felt more like I'm at the edge than now. But what's the darkness? This endless hell of watching Ashley wither away before my eyes, or the possible treatment Travis thinks is of the devil? Or is it just not knowing which way to go? What's the solid thing to stand on? The cure? What's flying? Dealing with her dying?
"I'm too stupid to understand this stuff," I say out loud to no one. I shut the book and put it in my pocket.
On the way to the cafeteria I run in to Logan getting off the elevator. His hair is tinged purple at the ends of the Mohawk, and he's got an earring: something neither his father nor I would've approved in a million years. I stare at the gold hoop before I meet his eyes, but I say nothing. There are too many battles, and this one seems so inconsequential.
"Hi Mom." It strikes me that he's nervous as well as defiant. He is at once daring me to yell at him here in this hospital and scared that I will.
I'm so tired of fighting. "You know you'll have to buy your own. Ashley will never let you raid her stash of earrings."
He grins. "Is she awake?"
I nod toward the room. "Go check. She said she was going to nap, but maybe she was just trying to get rid of me. She's been asking when you're coming."
I watch him trot down the hall, all legs and arms and purple fringe. I'm ashamed that I wonder: if Ashley dies, will he be enough?
I call Travis and the phone rings until his voice mail picks up. "Call me. We need to talk." I consider telling him I'm not the monster he thinks I am; that Dr. Benton and Dr. Jack are not the monsters he thinks they are. But I fold the phone and put it away.
I push the button for the elevator and wait for it to open. I pull out the book again and close my eyes. I open and point. "'Faith' means not wanting to know what is true." Friedrich Nietzsche I throw the book in the trash.
~~~~
Days that stretched out like a cat in the sun are now speeding by. The FDA approved the clinical trial and Dr. Van Der Campen and Dr. Benton have given me a handful of papers that detail the criteria, requirements, and process.
Ashley meets all the criteria. She's between 10 and 30 years old. She's been diagnosed with type 1 within the last six months. She's got complications difficult to control by other known treatments or drugs. She's kept records of testing her blood sugar at least three times a day.
Not that the testing does anything. It's high. It's high every time we test. All the different types of insulin and steroids in the world ain't changing that.
Already three people are signed up. They're only taking 20. Dr. Van Der Campen says it's just the first phase, and they'll take those results to tweak it further and then do another trial later with lots more people, but Ashley don't have that much time. It's gotta be now.
Travis has managed to show up only when I'm out, not sleeping in Austin and not answering phone calls. He sends Logan instead, who reads the paperwork and asks a billion questions I can't answer.
"How can you not know what Ashley's beta cell number is?"
"Why should I know? I don't even know what a beta cell is."
He shuffles the papers searching for her medical records and the last lab results. "Here it is. Jeez it's low, but she still has some. That's important. She has to still have some beta cells working or she can't be in the trial."
"What's a beta cell?"
"It's a miracle she has any after being so high for so long."
"You make it sound like she's a drug addict."
"She is."
I look at the IV drips that have become her fifth limb, the pump still on her stomach, the monitors with cords snaking under her flowered nightgown. "What's a beta cell?"
"Those things that produce insulin."
"I thought those were islets," I say, now confused; but Logan suddenly looks up at me as if seeing me for the first time. After years of eye rolling and attitude, there's something there other than disdain.
"Beta cells are in the islets. The pancreas holds the islets, the islets hold the beta cells. Like a sentence is made of words, and the words are made of letters."
"Oh." And instead of being jealous, I'm in awe of my son.
"How is the music store?" I ask.
"Good. There's a drummer who teaches there on weekends. He said he'd give me lessons for free. And the church said in the fall I can fill in with the worship band one or two Sundays a month."
"That's great."
"Well, I said I'd have to wait. You know, until Ashley is home."
Silence hangs in the air, the question of the future. I can't imagine not going home with Ashley, but looking at her on the bed it's hard to imagine life ever being the same as it was. God knows a part of me hated him for letting her get diabetes, but now I'd give anything to have her go home, shots and all.
We'd left the door to Ashley's room open, so I don't hear Travis walk in. He stands in the doorway and clears his throat.
"Hi Dad," Logan says, but I go on reading the papers.
"What are you up to?" Travis says, knowing full well what we're doing.
"Filling in the application," I say, trying not to be snippy and not succeeding.
"It's a little hard to do it in front of your back when you're not here."
Logan looks from me to Travis, clearly uncomfortable, and I hate myself for putting him in this position. Travis and I may not be the most lovey-dovey couple, but we never fight. Until now.
Travis must think the same thing, because he pulls up a chair and sits heavily in it. "I'm here now."
Logan sizes up the situation before being the bigger one in the room and speaking up. "Mom didn't apply. She's just looking at whether Ashley qualifies."
"You'd be willing to sacrifice everything you believe for this treatment?" He isn't snide. It's this that almost breaks my heart. He can't believe I would turn my back on everything I've railed against for years. "I never thought you were one of them, Babs. Sure, it's easy to tell a young girl not to get pregnant when it's not your life that's changing. It's easy to protest stem cell research when you have nothing to lose by it not succeeding. But when your very own daughter's life depends on it. . . I guess this is where the true believers are separated from the social activists. Don't you believe God will provide without sacrificing his own morals?"
It's Ashley who answers. "Albert Einstein." Her voice is a ghost of itself, hollow, and so slight we think she is delirious. "Albert Einstein," she repeats, her eyelids so heavy it's hard to tell if she's awake or talking in her sleep.
"What about him?" asks Logan, who has more faith in her lucidity than I do.
"He said. . ." She's quiet for so long that we all gather around her, like she is saying her last peace. "He says, scientists were rated as great heretics by the church, but they were truly religious men because of their faith in the orderliness of the universe."
"What does that mean?" grunts Travis.
I ain't seen half those words in the SAT book.
"It means," explains Logan, "that Christians have always called doctors and scientist anti-Christians because they didn't accept everything on face value, when in fact God is a scientific God to begin with."
Ashley lifts her hand and finds Logan's. For a moment it is just them, like they are all that matter, the two of them in some world alone no one else can enter. And then she drops his hand and begins to shake. It starts small, tremors in the arm that spread quickly until she is seizing full throttle. I scramble to find the call button. Travis is out of the room before I can hit it, yelling like a maniac and raisin' cain until four nurses and a doctor on call descend on us, shoving us aside and out the door to wait and fear.