Some Kind of Normal (24 page)

I don't know how the media is getting the names. The
stem cell doctor said they can't give out the names of their
patients, and it's clear the patients didn't want to be on TV. I'm
hoping it's not a matter of time before we're in the spotlight,
too.

The hives are nearly gone now, and Ashley's swelling
has gone down enough that it's easy to see how much weight she's
lost. They've started her back on real food again, and I worry that
when we leave the hospital there will be cameras, and people will
look at her and think, "She's not sick enough."

On the calendar there are two dates circled in red.
One reads: Ashley goes home. The other, ten days later, reads:
Ashley goes to Baltimore; starts beta cell replacement treatment.
I've spent the last two days gathering up my things, which have
scattered like dandelion fuzzies in a breeze. A coffee mug in the
kitchen. A towel hanging in the bathroom. Magazines and books in
the common room. Cosmetics in the bathroom in Ashley's hospital
room.

Ashley's wearing normal clothes again. She smiles and
hums and is sometimes crabby with me when I baby her. I found a new
word in a book Logan left the last time he was here: buoyant. I
like it. It sounds like we are floating. Which is what it feels
like.

When all the days before the red circle are crossed
off, I pack my car with the remains of our life here. Bags of books
and DVDs, the laptop, a box of cards, and photos Ashley has helped
me take down from where the Baptist ladies taped them. We stand in
the room looking at the bare white walls, the room stripped of
everything that had made it home the last month, and it almost
seems sad. Ashley finds a card in the box from one of the kids at
church, a sloppy rainbow across the front with the words,
Get Well Soon
in childish writing. Inside, it reads, "
God answers prayers
." She holds the
card to her chest for a minute and then lays it on the white
pillow. I thought saying goodbye to this place would be all joy,
but turns out it's a bit teary, too.

Travis has gone to drive the truck under the overhang
by the front door to wait for Betsy to wheel Ashley out in a
wheelchair. Not that she needs it today, but it's hospital
tradition, Betsy says, so we agree to it.

Ashley looks around in that saying-goodbye kind of
way and walks out to meet Betsy and the wheelchair.

The parents who live with us in the McD house are
there to see us off, like I was for others before us. Several kids
Ash has made friends with wave from a second story window. I've
never seen so many bald children in one place, but our going seems
to give them hope. I look at Ashley and think of what we've gone
through, of what is ahead, and I think I didn't know hope until
this moment.

I watch Ashley and Logan pile into the front seat of
Travis's truck, Ashley's feet propped up on dashboard, a grin
spreading from ear to ear.

"See you at home?" Travis asks, and I nod. The small
crowd waves as they turn out of the parking lot and disappear down
the street.

When she's gone, I return to check for anything we
might have missed. The sheets are already stripped, and there's a
hint of ammonia that replaces the smell of Ashley.

I drive home alone. When I walk in the door it's like
the last month never happened, except the house is actually clean
and there's no laundry on the sofa. Ashley's in her room, music
turned up. Logan's gone. Travis is sitting in his chair in front of
the TV, watching NASCAR. I sit on the couch watching with him, not
talking, until car racing turns to bull riding and Logan comes home
and Travis is hungry, and everything is so old normal I don't know
what to do with it.

~~~~

Janise calls a little after ten. "Turn on your
TV."

We turn on right as the news anchor cuts to the shot
of a reporter standing in front of Children's Hospital. I recognize
her as one of those local gals, the platinum blonde, face-tanned
reporter whose drawl is just a bit too sugary as she reports
stories that aren't sweet at all.

Logan's gone, Ashley's in bed, but Travis and I sit
to watch.

"
Yesterday we reported on a new treatment for
diabetes-- called by some a cure--that is being touted as a
possible medical miracle. As is usual with many medical
breakthroughs, however, there is a controversial side to the
procedure. Today, we're learning that many are protesting the fact
that this cure comes from one of the leading embryonic stem cell
researchers, a Dutch physician named Jack Van Der Campen."

"I thought he's American," Travis says.

"He is."

"It's come to our attention also, through extensive
research, that a young Texas girl is the next patient to enter this
untried and very risky treatment."

"Just because it hasn't been done in the U.S. doesn't
mean it's untried," Travis growls.

I'm surprised to hear him so defensive when he
himself was saying these same things not long ago. I don't get why
the news, which always seems on the side of medical research, is
now against it.

"Each of the patients in this trial suffer from type
1 diabetes, a disease which has no cure but is easily controlled by
a drug called insulin.
"

"Is this lady an idiot?" Travis says.

"According to the regulations we were given to view,
each patient must have some sort of complication that makes the
disease difficult to control,"
she continues.
"It seems that even the doctors
running this trial agree it would be hard to justify the type of
risks these children are taking."

"Why does she keep referring to them as children? One
is twenty."

"I'd like her to sit up with her kid all night
testing her sugar, worried every minute that she might end up
passing out." I get up to turn off the TV, but Travis put his hand
on my arm so I sit back down again.

"Can
you tell us about the procedure and the likely
complications?"
Bob is saying.

"Certainly, Bob. Firstly, each child will undergo a
very painful surgery in which their bone marrow is removed with a
long needle."

The camera cuts to a series of pictures of things
like needles and blood drops, in case people don't know what they
look like, I suppose. Seems to me like they are trying way too hard
to make something of nothing.

"While scientists take the marrow and attempt to
extract stem cells from it, the child will then have their immune
system destroyed by drugs similar to chemotherapy. This is where
the majority of the risks are. Besides the usual dangers of
surgery, completely killing the immune system leaves each of these
children open to many other illnesses and infections."

The camera cuts back to too-tan girl looking very
serious, like she really cares about all this. In the background,
the sign-wielding morons are jumping up and down and smiling, and I
get the feeling they are more interested in being on TV than making
a point.

"If stem cells are found, they are cultivated in the
lab to reproduce. When the immune system is rendered ineffective,
the stem cells are reintroduced and stimulated to create more of
the insulin producing cells in the pancreas. If successful, this
might reverse the disease and the children might be cured. We must
emphasize, though, that this has not been proven yet."

"It has been done successfully," Travis yells at the
TV. "Do your research, lady!"

At the bottom of the screen a little graphic of a
fetus with one of those DNA strand things through it appears, with
the streaming words,
check out our website for more information on embryonic
stem cell controversies
. Just the fact that they put this
alongside the story about Ashley makes my blood boil. No one will
remember what this big-haired lady says. What they will get out of
this is that this is about killing babies.

Behind the reporter are protesters standing out in
front of the hospital waving posters that show their collective
idiocy in matters of stem cell research. On TV, Bob and the blond
drone on.

"We've heard a lot about stem cell research, but we
rarely hear about the practical aspects of putting this research to
use. Are there drawbacks with this type of therapy?"

I hate the way they do this back and forth thing,
like they're sitting in a coffee shop having a conversation instead
of on TV reporting.

"Most definitely, Bob. Adult stem cells have been
known to mutate into the wrong type of cell, which can obviously
cause some very dangerous problems, as well as the fact that they
have, in the past, had a tendency to increase the risk of
cancer."

"Is this true?" Travis clicks the TV off and looks at
me. "I don't remember reading about cancer, or about the stem cells
turning into something else other than beta cells."

"She don't know what she's talking about." I don't
know this; I'm as concerned as Travis, but I am afraid this single
blonde bimbo is about to derail our plans to save Ashley, and right
now all I know is, cancer or not, this is the only option we
have.

"Where'd she get that information?"

"Who cares? It's wrong. You know the media. They just
like to blow things up. They exaggerate it to get a reaction."

He considers this and decides I'm right. "We should
ask the doctor, though. About the cancer thing."

"Okay," I say. I won't ask, but I don't tell him
this. I don't want to know. She dies of diabetes now, or cancer
later. I'll take the later and deal with that when it comes.

~~~~

After Travis is in bed I sneak out for my cigarette
and think about what the reporter said, and what everyone else is
thinking. The protest signs saying we are interfering with God's
design. The news that the stem cells could become something other
than what the doctors intend. Could they become heart tissue or eye
balls? I remember years ago hearing about some lady who had stomach
pains and went in for an operation. They found she had teeth
growing on her ovaries. Some cells traveled and made their home in
the wrong place. Could that happen to Ashley?

I've been so worried about finding some answer, any
answer, I wonder if there are some answers that are worse than no
answers at all. Is it possible this cure might be worse than the
disease?

And then I think of Ashley, barely strong enough to
walk, sleeping all the time, not able to eat, wasting away to
nothing but a skeleton in sallow skin, and I think anything is
better than this life she has now.

"How far will you go?" Travis had asked me that day
outside the restaurant, motioning to Dr. Van Der Campen inside
munching on chips and salsa.

"As far as I need to," I said.

Right now I hope we aren't going too far. Whatever
too far is.

~~~~

The first time it happens I think it must be some
kind of joke. Logan's friends maybe, or a rival baseball team with
too much time on their hands with summer break.

I stand in the yard, trying to work it out in my head
when Travis comes out to get the newspaper and sees it, too: red
paint splashed all over the driveway like blood. We turn and see it
spattered on the door and the siding, smears of it forming the
words
baby
killer,
and it hits us in the gut that this is no prank.

It's a message.

"Keep the kids inside," he says, pushing me toward
the house. "I'm calling the cops."

When the two officers arrive they do a quick search
and find two paint cans in the bushes near the back of the garage
but nothing else. One takes out a notepad and jots down something.
I recognize him from our sister Baptist church across town.

"When were you last outside before the paint
appeared?"

"It didn't 'appear,'" I seethe. "Someone threw it
there."

"Last night," Travis says, laying his hand on my arm.
"About 10:00."

"Did you hear anything suspicious after that? During
the night, maybe? Anything that woke you up?"

"No," Travis answers, then looks at me. I shake my
head.

"Can you get fingerprints from the paint can or
something?" Travis asks.

"Probably not, but we'll try. Most likely whoever did
this doesn't have a record to have prints on file anyway."

"Why do you say that?"

He shrugs. "Just a hunch. Crimes like this aren't
usually done by criminals with records. They're done by people who
feel morally obligated."

"You saying this is morally right?" Travis voice is
low and growly, the way he gets when he's really angry.

"I'm saying
they
think you are morally wrong. It's not about
destroying property. It's about making a point." He flips his
notebook closed like he's putting the matter to rest.

"So you're not doing anything?" I say.

Again he shrugs. "Not much we can do."

Travis and Logan spend the morning trying to scrub
the paint off. When hose and soap don't work, they pour some toxic
chemical on it and go at it with the outdoor broom. Logan don't ask
where it comes from or what it means, but I figure he knows. He
don't complain, neither, about giving up band practice for
cleaning. When I go to the store I buy him a tub of Twizzlers and
put them on his bed.

The next day our mailbox is bashed in. The policeman
don't even flip open his notebook for this one. "It might not have
anything to do with you. Looks like kids just playing pranks after
drinking a bit too much."

"But no one else's mailbox is beat up," I point
out.

"Well, it's hard to ID the bat that might've done
this, so I think you're just gonna have to buy yourself a new
mailbox and figure out why you think y'all are targets."