Some Kind of Normal (22 page)

"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:

~~~~

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.

"Behind my back?"

"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.

"You'd let her die?" I'm shaking almost as hard as
her. "You believe so much in some righteous stand you'd let your
own daughter die?"

Travis begins to cry. I've never seen him cry. You'd
think, in all the years we been married I'd have seen him cry, but
I haven't. But here in the hospital corridor, he sits on the floor
and cries.

"How can I choose between God and my child?"

And I realized why it was never so hard for me as for
him. My child always came first.

~~~~

We call Ashley's pump her Molotov cocktail. Every few
days the combination of drugs in it changes. They tried all the
kinds of insulin and ruled out everything but aspart, not because
Ashley tolerates it well, but because it's the least likely to kill
her. They mix the insulin with steroids, something like Benadryl, I
think, that's suppose to keep her from blowing up with hives and
breathing funny, except they are drugs with longer names I can't
pronounce, with lots of o's and p's and y's and n's in them. None
have worked well, but every time they try a new one Ashley and I
cross our fingers.

The fact that they can't try things faster is
frustrating the heck out of me. If she tests at nine in the morning
and is given the new cocktail, then tests no different at ten, or
at eleven, or at twelve, I ask if we can change and try something
else.

"It doesn't work that way, Mrs. Babcock," they say.
"It takes a long time for some of this to work, and then we have to
let it go through her system and out before we can try something
else."

Meanwhile, Ashley's not getting better.

The evening after the seizure, Dr. Benton visits
again. I'm afraid he's going to press about the trial. Since the
crying incident, Travis and I have a fragile truce that involves
not talking about anything important. It's amazing how two people
in the midst of a life and death situation can sit around a
hospital room and talk about things like the possibility of new
linoleum in the kitchen at home or debate the dangers of bumper
stickers.

But Dr. Benton don't mention the trial. He sits on
the edge of Ashley's bed and pats her leg and says, "What do you
think about us getting rid of Max?" Max is the name of her pump.
It's what she would have called a dog had we ever let her get
one.

"Max doesn't seem to be doing the trick we hoped. And
we've about run out of options for what to put in him. Your body is
a little resistant here, anyone tell you that before?"

Ashley manages a smile and looks at Logan. "He's the
rebellious one." Her voice is still faint, but stronger than before
the seizing.

"I'd like to try something else."

"I thought we'd run out of options," I say.

"Not quite. This isn't a long-term solution, but it
might help for a while. I'd like to put the insulin directly into
your umbilical vein."

"My what?"

"How's that gonna help?"

"When we give you shots, or even with an insulin
pump, the insulin goes in and goes through your blood stream," he
points to his own stomach and then draws a line with his finger up
to his heart, "and then it goes through your heart and back through
your blood stream," he drags his finger down his arm and up and
down his torso and leg and up back to the start, "and when it
finally gets to your liver, it's diluted. I'd like to inject it
directly into the vein that will take it to the liver, full
strength, faster."