Some Kind of Normal (28 page)

"Can we at least listen to music on the CD player?"
asks Ashley, not even fifteen minutes from home.

"And not that country junk you guys like, either,"
Logan pipes in.

I shuffle through the stack Travis keeps in the glove
compartment and pull out the only non-country one he has. It's 50s
and 60s music, and the kids groan, but when I turn it off they yell
to put it back on, so I do.

It's fun music, and we find ourselves singing along
enthusiastically, mostly out of tune, and laughing over the goofy
lyrics. When
Wonderful World
comes on we all sing louder, the
windows of the truck down and the hot wind blowing away the cares
weighing down on us the last weeks. For a few moments, it's as if
none of this has happened and we're all back to the way we used to
be, years ago, before the hospital and before adolescence, before
money troubles and time wore us down.

Travis takes my hand as he sings.

I used to love this song because it felt like my
life. It's really just a litany of things I don't know nothing
about. Me and Louie Armstrong-- neither one of us knew about
biology or science or French. But we had love. I liked that all
that mattered was love.

I danced around the kitchen singing this song with
the kids when they were little. It seemed funny then. A tenth grade
education don't seem too bad when your kids can barely speak and
they only need to learn colors and shapes and letters, and love is
the thing they need the most. But pretty soon it's algebra and
dissecting frogs and Spanish and curing major diseases, and love's
just not enough.

I let the others' voices carry the song, and I watch
the flat ground turn into rolling hills and the clouds gather on
the horizon. I ignore the signs that say the next rest stop is 110
miles away and that civilization's behind us, and we are heading
further out to where there is nothing if we should have
trouble.

~~~~

We set up the tent without making too big of fools of
ourselves and decide to go walk along the shore before the sun goes
down. Ashley lingers behind us, searching for shells and pretending
that she isn't so tired she wants to lay down in the sand and
sleep. Logan pretends to be searching for stones to skip, but I see
him slipping shells into the bucket Ashley sets down every now and
then. We are all pretending this is something it isn't, which is
Ashley's version of a "make a wish foundation" request.

At the campsite I cook chicken over the stove, but
Ashley picks at it and excuses herself to go to bed. When I go in
the tent, she's already half-asleep.

"Did you test?"

"No."

"You gotta test, Ash. You can't just go to bed
without knowing what your blood sugar is."

"Why?"

"Why? Why?" I can't bring myself to say why. "Because
you have to, that's all."

"It's high, Mom. And more insulin isn't going to help
that, so why bother?" She rolls over and closes her eyes.

I hunt through the duffle bag and find the meter.
"Give me your hand." She does, begrudgingly. I prick and panic when
the number comes up over 550. "Good mother of Moses, Ashley. It's
558."

"Toldja," she says, and tucks her hand back under
her.

"Don't go to sleep. Don't you dare go to sleep." I
pull her shoulders up so she's slumped upright like a rag doll.
"Travis! Travis!" I yell, sure everyone in the campsite can hear
us. In a split second he's at the tent flap. One look at Ashley,
and he's running to the truck.

"I'm calling Dr. Benton. Logan, put out the camp
stove and roll up the sleeping bags and throw everything in the
back."

Other campers come over and ask what's wrong and
offer to help. In less than ten minutes we have everything in a
heap in the bed of the truck and are on our way to the hospital.
Dr. Benton tells us to meet him there and to keep Ashley awake and
make sure she is drinking water.

This is, I'm sure, the longest three hours of my
life. There's no music on the way home. No fun banter, no jokes. I
sit in the back with Ashley and try to keep her from falling into a
coma.

~~~~

When we arrive at the hospital, a small entourage is
waiting. They hook her up to IVs again, and Dr. Benton changes the
insulin brand, hoping that'll buy us a little time. He pumps her
full of steroids again and we wait.

"How could we be so stupid?" Travis mumbles.

"It would've happened no matter where we were," I
justify.

"But if we'd been home, we'd have been three hours
closer."

"It doesn't matter now," Dr. Benton says. "She's
here. And we need to get her to Baltimore as soon as possible."

Suddenly, Janise is here, hugging me and telling
Travis and Logan to go home and finish the packing we started, that
she'll stay with me. I don't even ask how she knows we're here; I'm
so relieved to see her. It's 2:00 in the morning by the time it
quiets down. Janise works the phone and pretty soon has us a new
flight out and calls Donna Jean to have her take us to the airport
in the morning. Dr. Benton comes in at 5:00 to tell us Dr. Van Der
Campen is expecting us and will meet us there.

The new insulin, or steroids, or the IV works, and
Ashley is back down in the 200s by the time Donna Jean arrives. Her
arms and legs are covered with wheels, the circly, hivy things that
come from the allergy, and Travis brings her a light, long sleeved
shirt and a long skirt to cover them. It won't be good to have
people on the plane worried about her being contagious.

Dr. Benton gives each of us a hug as we leave; the
sun is barely up. "Will you be there, too?" I ask.

He shakes his head. "This is Dr. Van Der Campen's
baby. I have a job here. But I'll call, okay? You're in great
hands."

Janise also hugs us goodbye. "I'll pray for
y'all."

"I don't know what I'd do without you," I say.

"Go," she says.

I climb in Donna Jean's Suburban next to Ashley and
wave through the window. As she drives away, I think this is not
the way I intended on leaving.

~~~~

None of us has ever been on a plane before. Heck, a
trip to San Antonio is as exotic as we ever got. Washington D.C.,
well, that seems all the way on the other side of the world. We
talk about seeing the sights, the monuments and the museums and
getting a look at where the President lives. But we all know we
ain't gonna see any of that stuff on this trip. If it goes well,
we'll be back. We'll be back, and Ashley will be well. We don't
think about what it means if we don't go back.

Travis packed what he could find and figured anything
else we could buy there, or Travis can bring on one of his back and
forths.

Austin's a small airport, and Donna Jean finds a
space right near the door. Travis hunts down a cart, and Donna Jean
finds a wheel chair. Besides this latest battle with insulin,
Ashley's been getting shots every day; something called filgrastin,
to make her produce more blood for the bone marrow surgery, and
she's complaining that they make her muscles and head hurt. This is
in addition to a concoction of drugs called prednisone and
azathrioprine, which are suppose to keep her immune system from
attacking the few good beta cells she's got left. I'm afraid if
someone lights a flame too close to her she might blow up. Surely
that amount of drugs can't be good for a person.

We check in without any problems, and when we roll
Ashley up to the gate they allow us to board early. We settle her
in at a window and check her sugar to make sure it's stabilizing.
She drifts off before anyone else even boards the plane.

I sit in the middle seat next to her, Travis and
Logan across the aisle, and I feel nervous and anxious and not at
all the way I thought I'd feel when I got to this point. This is
not how I imagined it would be.

"Is everything okay?" A flight attendant is standing
next to me, watching me twist a rubber band furiously around my
fingers.

"I forgot something," I say, surprising myself. I can
hardly breathe. I feel like I'm suffocating. "Can I get off for a
minute?"

She nods and tells me to make sure I bring my
boarding pass with me. I'm down the aisle and off the plane,
running for the security, through the gates and out the front door
into the stifling August heat.

"Donna Jean! Donna Jean!" I'm bent over out of breath
by the time I get to her, my chest ready to split in two. "Wait,
Donna Jean!"

"Babs, what's wrong?" There is nothing on her face
but utter concern. I'm now sobbing, the ugly snotty kind with the
gasping, I'm-dying-kind of breathing 'cause I ain't run that fast
since I was nine and Bobby Garson hid in the cemetery and made
ghost noises at me on Halloween.

"What if. . ." I'm wheezing. "What if. . . what if it
doesn't work?"

She throws her arms around me, a completely
uncomfortable gesture for me, except I find myself hugging her
back. I expect her to comfort me. To say what I need to hear: that
Ashley will be fine. That in a year we'll look back on this and
wonder why we didn't have faith, and marvel at the miracle of
medicine and answered prayers. But she don't say any of this.

"Then you have a whole church of people waiting to
help you get through it."

It's not the answer I want. It's so much not the
answer I want that I pull back like I been slapped.

"I can't tell you it's not possible, Babs." She took
my hands. "But I do believe she'll get better. I think this is the
answer you all have been looking for. And," she gives me another
hug and whispers in my ear, "I hope you personally find the answer
you are looking for there, too."

She waves as she drives away, and I realize the plane
is going to take off without me. I think about what she said as I'm
running back through the airport. What is it I'm looking for?
Ashley to get better. That's all. That's all I want.

The last of the passengers are stowing their luggage
in the overhead when I squeeze past them and find my seat again
next to Ashley. Travis looks over and wrinkles his eyebrows at me.
"Where'd you go?"

"I wanted to grab some food." I'm sure my eyes are
puffy.

"Where is it?"

"Where is what?"

"The food."

"Oh. I guess I forgot it." Before he can ask, the
flight attendants shut the door and the plane starts rolling
backwards. I make a big deal of finding the emergency pamphlet and
following along with the flight attendant as she shows us how to
buckle seat belts and how to put on air masks. I look around for
the exit near me and avoid Travis's questioning eyes. I wake Ashley
as the plane starts gaining speed and point out the window. She's
always wanted to fly, and I don't want her to miss it.

As the plane lifts off the ground, she's all lit up.
"There's Town Lake! There's the hospital! Look how small the cars
are!" Even Logan, who usually puts up a good show of looking bored,
is nose-pressed to the window. When we're high enough that the
clouds cover most of the view, they both settle back in their
seats. Logan puts on earphones and thumbs through a magazine.
Ashley falls silent, but she don't sleep. She continues to stare
out the window, across the featureless sky all milky white.

"Are you excited?"

"Hmm." I don't know if this means she's too tired to
talk or just don't feel like it. Is it being twelve, or having
diabetes?

"Is the plane what you thought it would be like?"

"Sorta. It looks like it does in movies, only maybe
with less space. It doesn't feel like we're flying though. It feels
the same as driving."

I loosen my seat belt and try to figure how to tilt
the seat back. "What did you think it would feel like?
Floating?"

She shrugs but blushes a bit. "Maybe."

I find the button to recline the seat but it does
nothing. The guy in front of me leans his back so far the seat is
less than a foot from my nose and the tray pops out. Ashley
giggles, which is the first time I've heard this in a while, and I
forgive the man.

"What about the surgery? We haven't talked much about
it since we made the decision to do it. You still think this is the
right thing?"

"It's a little late to change my mind now. We're on a
plane."

I stop fooling with the seat. I take her hands and
hold them in mine. "It's not too late. It's not too late until they
inject all the drugs into you. If you ever decide you don't want to
do it, you say, and we'll go home."

"And do what, Mama?"

"Find something else. We'll find you something else.
Some other drug we haven't found. Some other clinical trial that's
less risky."

She slips her hands out of mine and tucks them in the
blanket over her legs, turning back to the window rather than face
me.

"You don't have to do this, Ash. Have you changed
your mind?" There's a small part of me that hopes she has. I know
that doing nothing is worse than doing something, but to actually
choose to do something that could make this nightmare worse. .
.

"I do." She is so quiet I have to lean in to hear her
over the noise of the airplane. "I have to do this or I'll
die."

Kids are supposed to think they're immortal. That's
what the news tells us. That's why they do stupid skateboard tricks
off roofs and drag race through town at two in the morning. They
think they can't die. And so adults go around trying to pound into
them that they're mortal, that they can die. And right now I wonder
why. Because all I want at this moment is for Ashley to think she
can't die.

~~~~

Our plane flies all the way to the Atlantic and then
loops around to land. We come in over the monuments, and Logan
moves to our side to point out the Washington Monument and the
Capital Building. "Which one is that?" Ashley asks, pointing to a
large square building by a long rectangular pool of water.