Some Kind of Normal (30 page)

What if. . .

We don't let ourselves get that far. Tomorrow is too
big a word for us, and so we take just today. We made it this far.
That's good, isn't
it
, I ask myself. And I don't listen when the small voice
inside says,
not
good enough.

~~~~

The anesthesia's slow to wear off, and because she's
so weak to begin with they want to watch her over night. The room
is really too small for all of us. I never thought I'd miss that
room at Children's, but I do. It's clean here, and bright, but
there's not enough chairs and no sofa, and no desk. Nothing that
makes it feel warm. It feels like a hospital.

She wakes groggy and goes back to sleep, and at nine
we finally decide to leave and go get something to eat. We find a
fast food restaurant that's nearly empty and eat food that has no
taste, but we don't care. We only eat because we have to.

I go to bed with Travis, not sneaking out, but
curling under the covers listening to his snoring and the sound of
the TV behind the wall in Logan's room.

When Brenda's father died a few years back, the
church came behind her the way it's come behind us. They fixed
meals and prayed for her and mowed her lawn. They sent cards and
took her kids out swimming and to the movies. She said she never
felt so loved, so completely surrounded by God and friends.

They mow our lawn and fix us dinner and pray for us.
They send cards and invite Logan to hang out with their kids. And
I've never felt more alone.

The room is so dark I nearly can't stand it. In our
home back in Texas, we don't pull the blinds at night and the sky,
all wide and sparkly, shines in. When we were young, Travis and I
used to lie on the floor in front of the sliding glass door and
watch the thunderstorms roll across the wide open spaces towards
us, lightening streaking across the sky in great bolts of
electricity. It seemed romantic then. Now I worry the electricity
will go out or the oak in the backyard will get hit.

Travis rolls over and lays his arm across me, pulling
me close. "I thought you were asleep," I say.

"I was." He kisses my hair and tightens his arms
around me, pressing me into his chest. It's the safest I've felt
for a long time, and I curl into him, breathing him in and feeling
the strength of him next to me. "I've missed you." He kisses my
forehead, my cheeks, my nose, until he's pressing his lips on mine.
It's more need than passion, but in the dark of the room we take
what we can get.

I lay, hot and slightly damp, with my head on his
shoulder, circling my fingers across his chest. "What if this don't
work?" He understands that I'm asking about Ashley and not us,
because in the last two months almost all that's left is Ashley.
Little of us exists except for this, and this small desperate act
to feel connected is related to Ashley, and everything now, even
sex, is about keeping her alive, or keeping our will to fight to
keep her alive.

"This will work."

"How do you know?"

"Because it has to."

I roll away from him and onto my back, staring into
the black ceiling. "I don't think medicine works that way."

He pulls me back into him, wrapping his free arm
around my waist and cradling my head with the other. "Then we find
another way." His hands move through my hair, running from my
forehead to the base of my neck and back up, this repetitive motion
that used to drive me wild.

"I heard about other stem cell research."

His hands stop for the briefest of moments, and then
resume. He don't answer and maybe this isn't the best time to bring
something else up, but I do anyway.

"They can get stem cells from umbilical cord blood.
It's like the embryo cell--pluripotent, or whatever that is--and it
can become anything they want it to. She wouldn't even need working
beta cells, so it wouldn't matter if she didn't have enough. They
engineer them to be the beta cells."

"Can she get umbilical blood cells from anywhere? It
seems like there would be some mass market to sell the stuff if it
were that valuable."

"No. They usually use it for babies where the parents
have already stored it. From when they were born."

"Parents think that far ahead? They're delivering
their babies and suddenly think, Gee, I might need this umbilical
cord in case my kid gets diabetes in twelve years?"

"Some do."

"And how does this help us? You didn't keep a little
jar of it for old-time's sake, did you?"

I try to ignore the sarcasm in his voice. "No. But
it's possible to use it from someone else, someone who's
compatible, like a transplant."

"And where would we get that?" He's stopped stroking
my hair altogether now.

"We could have another baby."

This does it. He rolls me off his arm himself and
throws his hands over his head. "Jiminy, Babs. Do you hear
yourself?"

"We never said we were done." I sit up and try to
make his features out in the dark. "We just kind of stopped after
Ashley. But it would be great to have a baby again, don't you
think?"

"No. Not for this reason." He swings his legs over
the side and gets out of bed. He walks to the bathroom and turns on
the light, near blinding me, and shuts the door behind him. I wait.
He turns out the light and washes his hands in the dark, taking a
long time.

"Not to save Ashley, you wouldn't even think about
it?"

He circles the bed and sits on the side, not laying
down, putting his head in his hands. "Especially not to save
Ashley."

I am so stunned by this I can barely speak.
"Why?"

I can see him turn to look at me, but I can't see the
expression. "Do you have any idea what that would do to a kid?
Knowing their entire reason for being was to provide umbilical
blood for their sister? And what, God forbid, if it didn't work
out, and Ashley died anyway. What if they felt responsible for
that? What if they felt their entire purpose in life was to save
their sister, and they failed before they could even eat solid
food?"

"We'd never let a child feel that way." I reach over
to touch him, but he moves away.

"People feel what they feel, Babs. You can't make
them or let them or keep them from feeling just because you want it
that way. We are not creating another human life to be the donating
stem cells for Ashley."

He fumbles in the dark for the shorts and shirt he
flung over the chair and pulls them on.

"Are you going somewhere?"

"Out."

"You can't just leave."

"Watch me." He grabs the key card and lets the door
slam behind him.

Behind the wall, the TV in Logan's room drones on. I
pound on the wall. "I need a cigarette," I yell.

"Forget it," he yells back.

I flop back onto the bed. Three months ago I'd never
have believed I'd be fighting with my husband and asking my son for
cigarettes.

Or waiting around for my daughter to die.

~~~~

"She'll be here anywhere from 18 to 28 days,
depending on how fast the drugs work and how well the beta cells
multiply," Dr. Van Der Campen tells us.

We nod and pretend we're listening when the truth is
we've gone through this all before. We know the steps ahead; what
we want to know is what he can't tell us. How many good stem cells
will the bone marrow yield? How sick exactly will Ashley get with
the drugs, and how well will they work? Will the transfusion of
stem cells help her beta cells grow? In 28 days, will we be going
back home?

"We start today with an infusion of drugs that will
start to kill her immune system. We're giving her an antibiotic,
too, as a backup, but any germ can be dangerous. From this point
on, she's going to be in an isolation room. Every time you come and
go, you will have to wash your hands in the sink right outside the
door. You will need to wear gowns and gloves and masks to keep
exposure to infection minimal."

We nod. It's simple enough. Don't kill Ashley by
sneezing on her. We buy into this star wars kind of atmosphere. I'm
thankful there ain't some huge plastic bubble she'll have to live
in. Masks, gloves, scrubs. I can do these.

"The first thing we'll give is the cyclophosphamide,
which is the immunosuppressant." He looks squarely at Ashley. "This
may make you feel sick to your stomach. We're going to give you
something that should help that, but it's still possible you'll
experience nausea."

I try counting the syllables in that first sentence,
but I can't remember the name of the drug two seconds after he says
it.

She already has an IV in, so attaching the water-like
medicine to the mix is anti-climactic. He flips the little switch.
A small amount of fluid runs through the tube and into her arm. And
then it stops.

"That's it?" Ashley asks.

"That's it," Dr. Van Der Campen says. I'll be back in
16 hours to do it again. Do you have any other questions?"

"Are the others already here?" Ashley asks.

"Others?"

"The other kids participating. Do they start today
too?" I can see Ashley has in her mind that everyone is lined up
through the hall, door after door of science experiments, all
doctors synchronizing their watches and flipping the plastic lever
at the same time. If she were to run an experiment, it would look
like that. But this is life. And life's never that neat.

"Yes, two have already begun treatment. One is five
days in, and the other is three days in."

"So I'm not the first?" There's disappointment in her
voice, but I feel a rush of gratefulness. If something goes
terribly wrong, it won't go wrong to us first.

Dr. Van Der Campen closes the clipboard and checks
the drip lines again. "No, but everyone will go at their own pace.
It's possible any one of you won't have enough viable stem cells to
work with, or that the immunosuppressant drugs won't be as
effective as fast. That," he says patting her feet through the
blankets, "is why we have staff watching you 24/7."

He's on his way out when Travis says, "So what do we
do now?"

"Wait," he answers. "You got a whole lot of waiting
to do."

~~~~

Over the next few days there's nothing to do but
wait. Not even hope, since there's nothing going on except poison
running through her veins. She gets sick like the doctor warned,
but since she's not eating, there isn't much to come up. The drug
information says she might lose her hair, but the nurses say she
probably won't be on it long enough for it to be noticeable.

Boredom sets in. I've stopped Googling answers,
because there ain't none left. One point eight million hits, and
we've come to the end. Travis is right. This will work because it
has to.

We read books and watch TV, but none of it sinks in.
They are words, letters, sounds. They mean nothing.

Logan spends a lot of his time downloading new songs
on Ashley's ipod and sitting with her as she listens, which is
about all she's up to these days. Friends from church and school
email songs with notes attached, and Logan faithfully reads them to
her, placing the earphones gently over her ears and explaining why
each friend picked that particular song. Brian Lee sends an entire
mix, and Ashley cries the whole way through the CD but refuses to
let us take it away.

Once I overheard Logan on the phone with the band,
telling them to find another drummer, that he wouldn't be back for
a long time. I asked him if he wanted to go back to Texas for a
while.

"Several of your friends' families have offered to
let you stay with them. And Dad is going back this week. We can
send you back, too. You should be there. It's your senior year. You
shouldn't miss that."

"I should be here," is all he'll say, and so that's
the end of that.

Yolanda is taking care of the mail this week, and she
sends an envelope with some she thinks might be timely. Inside are
Logan's SAT scores. I want to open them, but I give them to Logan,
and he disappears outside to open them by himself.

When I find him, it's by the hotel pool, leaning back
in his chair and staring up at the stars like the first night we
arrived.

"Do I get to know what you got?"

He hands the envelope to me, and I move my chair
under the dim light. It takes a moment to figure out how the scores
are labeled but when I do, I practically stop breathing.

Reading: 790

Mathematics: 770

Writing: 790

"Logan! That's practically perfect!" I try to
remember from the SAT prep books he used what the likelihood of
this is, and all I can remember is that it's close to none. "How in
the world. . ."

Logan smiles, not an arrogant, I-told-you-so smile
but a content one. "Not bad for a hick kid, huh?"

I whack him on the arm with the envelope. "Don't you
dare call yourself a hick kid. Look at this! You could get in
anywhere you want! I bet you beat out every kid in Texas!"

"It's not a competition, Mom."

"Of course it is!"

"I'm not going, Mom." He can't possibly be saying
what I think.

"What do you mean?"

"I'm not going to college. At least not right
away."

"Oh yes you are. Do you realize what your Dad and I
would do to be able to go back and go to college? Heck, I might
just settle for finishing high school. This is the opportunity for
you to be something. You can make something of yourself."

"I already am something."

I feel like he's hit me in the chest. "Of course you
are. I didn't mean it that way. . ."

"You did. I know what you think. You think to be
someone important you have to go to school and get some degree and
know big words and do math most people don't even understand. You
think being someone important is moving out of the small town you
grow up in and getting some fancy house in a city and having lots
of money and a string of letters behind your name."