Some Kind of Normal (17 page)

He thinks about this as he takes a stab of enchilada
and chews it. "You think you're the only one who thinks about this
stuff, Babs? You think I haven't asked myself those questions
too?"

I actually didn't. His faith seems so sure of itself.
Then I think of him in the hospital yelling at Pastor Joel. "How do
you do it, then? How do you keep believing?"

"I don't know. Maybe because it's easier than not
believing."

"So it's like a crutch?" I try not to be bitter when
I say this, but his answer is the most useless answer ever.

"No. It's not that." He's frustrated, I can tell.
I've asked him to explain something personal. He don't do well with
explaining or personal, but I need to know. I need to know how he
can not be angry that Ashley is so sick.

"You know what Pastor Joel told me the other day?" he
says.

"What?"

"He told me you can't always know what God is going
to do or why, but you can always trust that it's the best
thing."

I put down my fork, not that I'm eating anyway. "You
telling me it's best for Ashley to die?"

"No!"

"Then what does that mean?"

"I don't know, okay? Maybe it means we see just the
little picture. Today and tomorrow and maybe a few days down the
road. But God knows it all. He sees the future all the way through
the end."

"And the future is better without Ashley?"

"No, Babs. You're twisting my words." He puts his
fork down and pushes his plate away. "I don't know all the answers.
It just seems like trusting God is more a sure thing than trusting
science. I don't know how you can trust pills more than God.
Especially after medicine isn't exactly working for us right now. I
gotta go to the bathroom." He stands suddenly, pushing his chair so
fast it starts to fall over and walks into the restaurant.

I'm alone again. In the middle of a crowd. I push the
food around on my plate, but I can't bring myself to eat it. All I
can think is how many carbs there must be with all the rice and
beans and tortillas and how if I can't trust God or science, who
can I trust?

~~~~

"Enough is enough," Dr. Benton says on the fifth day
of our second settling in at Children's. "It's time to move to plan
B."

"The desensing thing?"

"Desensitization. Yes." He lays a graph across
Ashley's lap. "This is a day-by-day guide to what's going to happen
over the next few weeks. We're going to keep you on the pump, and
the lispro insulin, but we'll back way off your dosage. You'll
start with a miniscule amount. Not enough to do anything to your
blood sugars--not enough to do anything to cause your immune system
to react, but hopefully enough that your body will accept it. Once
it does, we'll up the dosage. A little every couple hours."

"How long until I'm able to eat again, and take
regular amounts?" Ashley is tired of the intravenous "food" and is
asking for something substantial. She's lost so much weight I can
pick her up, which I've had to do twice when she couldn't walk to
the bathroom by herself 'cause she was so weak.

"Six months, if things go well."

"Six months?"

"If it goes well."

"And what if it doesn't go well?"

"Then we move on to plan C."

"I thought there wasn't a plan C."

Dr. Benton takes the graphs from Ashley's lap and
puts them back in his folder. "There is always a plan C. We don't
give up until we've won."

For the first time he sounds tired and not at all
sure. I follow him into the hall, out of earshot of Ashley and ask,
"Do you know what plan C is?"

"I'm working on it."

"Do you think the desensi-thing –"

"Desensitization."

"That. You don't think it will work?"

"There's no way to know, Mrs. Babcock."

"Are there odds?"

"There are always odds. But those odds don't count
much to the one who falls outside of them."

"So it's bad, then?"

He runs his fingers through his hair. I can tell he's
frustrated with me, but I can't let up. I'm like some pit bull
that's got her jaws around a neck and I can't let go.

"It's bad if it doesn't work. It's good if it does.
That's as certain as I am. This works, Mrs. Babcock. It works most
of the time. More often than not."

"But?" There isn't certainty in his voice. He isn't
talking like a doctor talks who has a better than odds-on
chance.

"I just like to have a back-up."

"And we don't?"

"I'm working on it."

I let him go. He walks down the hall and disappears
around a corner. I watch way past when I can't see him. I stand in
the hall while nurses walk around me, and parents move in and out
of rooms, and dinner trays are collected. I think how tired I am,
and I think how Dr. Benton must feel responsible for keeping Ashley
alive, like I do. For the first time, I wonder if he has a wife and
kids at home. How can he run his office when he's down here in
Austin 7 days a week? I realize it's Sunday and he's here, even
though it must be his day off.

When I go back in the room, Ashley is asleep, her
breathing like loud, punctuating sighs. Travis was called as a
fill-in on a remodeling job today, and Logan is practicing for a
gig with the band next weekend, and I'm alone.

I try to read, but I can't concentrate. I don't want
to turn on the TV and wake Ashley. I think about going to the
cafeteria, but the thought of food makes me nauseous. I finally
decide it's as good a time as any to pray, so I close my eyes and
wait for the words to come. But I don't know what to say. "Help
us," is the best I can do. I wait for God to speak to me. But he
don't.

And then Donna Jean walks in.

"Am I interrupting," she whispers.

I'm so glad to see her--anyone--that I want to throw
my arms around her. I take her down to the family resource center,
which is empty tonight, and pour us both a cup of coffee. We sit on
the couch.

Immediately, she opens a black bag she is carrying
and pulls out a laptop. "I convinced my company to donate this to
you. It's old," she says, shrugging off my protests. "It was just
gathering dust in a supply closet, and it seemed like something you
might be able to use to help you. Or at least maybe occupy some of
your time."

She opened the laptop and turned it on. "I thought
you might want to research other options. You know--if the
desensitization doesn't work."

I feel such a rush of gratitude that I don't even
hate her for knowing the word.

"I took off all the work programs, but there's still
word processing and Internet. Also, I put on some games. And it has
a DVD player, if Ashley wants to watch something in the room." She
opens up the Internet. "Do you have an email account?"

"Travis has one. And the kids. I don't. I just never
had time." What am I? An 80-year-old codger? What forty year-old
don't have an email?

"We can set one up for you if you want."

With a few clicks she signs me up, then hands me the
laptop and a notebook. "Here are a few sites I thought might be
interesting. And a few keywords to Google. Let me know if there's
anything else you need."

"Are you leaving already?"

"Bible study starts in an hour and a half. I'm
leading the ladies group."

I don't know if I should hug her or something. She
stands, ready to go. With the laptop on my knees, I try to stand
but it nearly slides off. I barely catch it before realizing my
feet are caught in the cord. I clumsily fall back onto the
chair.

"It's okay." She laughs, handing me the pen that
rolled off the couch. "I can see myself out. Call later, if you
want. Let me know how it's going."

I watch her leave out the glass doors and disappear
down the hall before turning back to the computer.

I start with the websites she's written for me. One
is a message board for parents with diabetic children. I don't know
where to start so I click on the first post: "Anyone heard of
Apidra?" There are ten responses to "kaylasmommy," and I learn that
Apidra is one of the newer insulins on the market. I write the
question in the notebook: "Have we tried Apidra?"

The second post is from "findthecure" and is titled
"Nailing the 504 to the school room door." There are 123 responses.
Seems like I'm not the only one having trouble with a school that
doesn't get how dangerous diabetes is.

The third post is from "mike315." "Endo from
hell!!!!"
"Our
family moved last month and I am having a hard time finding a new
endo for my four year old son. The only one in our town wouldn't
give us an appointment for six months. When we called and said it
was an emergency, because we couldn't get Evan's numbers down under
200, he told us not to worry unless they stayed above 300 for more
than a week. Also, when we asked if we could start the process for
getting Evan a pump he told us it was a waste of money and that
people on pumps get lazy about controlling their BS. Anyone here
know of a good endo in the southern eastern part of
Georgia?"
There are 97 responses.

Before I know it an hour is gone, and I'm still
working through the forum. I've learned schools are far from
perfect, families routinely fall apart fighting over how to deal,
people are firmly on the side of pumps or shots, but not both,
insurance is the enemy, and we should thank God for Dr. Benton,
because I don't see anyone who has a endocrinologist as good as
him.

The door opens. I look up and see Ashley, her hands
on her pencil-thin waist. "How long you been here?"

"A while. How did you find me?"

"Betsy said she saw you and Miss Donna Jean come down
this way. What are you doing?"

I pat the couch next to me, and she sits and looks
over my shoulder. "Where'd you get the computer?"

"Miss Donna Jean. Look what I found." I show her the
message board and then back out to the list of forums. "They have a
whole bunch of groups. There's one for kids your age with type
1."

"Are any of them allergic to insulin?" She's always
known how to cut to the chase.

I hand her the computer. She types quickly. I watch
her fingers flying over the keyboard and wonder where she learned
her way around the computer so well. She don't find anything in the
message board, so she backs out into Google and does a search for
"insulin allergy." One million eight hundred thousand results pop
up.

The first one looks like just a definition, but the
second one is Insulin Allergy Successfully Treated. She clicks on
it as fast as a fish on bait.

It's a university study profiling some kid a little
older than her. She skims through the medical jargon and slows on
the description of the kid. His symptoms sound like hers. They use
the same method Dr. Benton is starting Ashley on. The story is
extremely vague on specifics. It don't tell us how he survived for
six months on barely-there insulin levels, or how much weight he
lost, or when in the process the hives went away, but it did end
with him getting off steroids and taking further insulin without
problems, and that's all Ashley needs.

"See? This'll work!"

"Let's see what else is out there. Just in case.
Let's see if there are any plan C's."

The next was a case where a type 1 woman was treated
with a mix of insulin and steroids, just like Ashley had the last
few days. The next few were more explanations about what it is and
how rare it is. One was a medical study about the causes of it and
how the different kinds of insulin provide alternatives. The last
of these mentioned that many people who have allergic reaction to
human insulin are fine with beef insulin.

"Insulin from a cow?" Ashley stuck out her tongue and
bit it. "Ewww!"

"You'd rather have pig insulin?" I suggest, reading
further.

"How do you think they get the insulin out of a
pig?"

"I'd think the pig would need it's own insulin. Don't
you?"

"Maybe they found a way to increase how much it
makes, and they can take out the extra."

I consider this, as outlandish as it sounds. Maybe
they could do the same with me. Maybe they can make me produce
extra, and I could donate it to her.

I write the new options in my notebook:

Beef insulin?

Can a relative donate theirs?

On the second page there are several "ask the doctor"
sites where people write in and ask the doctor to diagnose them
based on email. None of these is what we're looking for, although
one doctor does say how rare it is to be allergic to insulin. We
find this not at all helpful.

We slog through another page or two of websites,
Ashley getting more discouraged with each page until we find the
one we didn't know we were looking for. It's a science magazine
article with the headline "Mice Cured of Type 1 Diabetes; Humans to
Follow."

"A cure?" Ashley is brimming with hope, tapping the
down arrow furiously as I try to keep up with her.

"Slow down," I say irritably, trying to understand
the words on the page. It's a vaccine. A simple vaccine that's
already being given for other diseases. It's been shown to stop the
immune system from attacking the pancreas. "It cured them." The
words wash over me.

"I'll do it," Ashley says, her eyes glued to the
screen. "I'll try it. It's safe, right? If it's used for other
diseases, it has to be safe to use."

"Why hasn't this made the news," I add, not wanting
to admit that just two weeks ago I would've turned the channel on
the news if that tidbit came on. Who cares about field mice being
cured of some disease you know nothing about?

I write down the web address in my notebook and a few
sentences to remind me about it, not that I could forget. I'll show
them to Dr. Benton later and ask if he can find out more about
it.