Some Kind of Normal (15 page)

I'm no stranger to the hospital anymore, and I greet
the receptionist with a howdy as I pull down the shoulder of
Ashley's shirt. She immediately shows us to a curtained room and
tells us she'll get the doctor right away.

Ashley's been quiet all morning. Quiet, in fact,
since we got home from the hospital last night.

"You okay, Babe?"

"Yeah, I'm fine."

A nurse I've never seen comes in with a clipboard.
She barely looks at us. "The doctor will be here in a minute. I
need to get your information. Which one of you is the patient?"

"The one who looks like her arm is a helium balloon,"
I say. I get a look for that. "Ashley Babcock." I think of Logan's
SAT list week 5: acquiesce. I don't know how to pronounce it, but I
know it means what I have to do to get Ashley help.

"Age?"

"Twelve."

"And what is she here for?"

I point to her bloated arm and neck. "I'm afraid she
got in Willy Wonka's secret stash of gum last night and things went
terribly wrong when it came to the cherry pie part." Ashley
giggles, but the nurse gives me a look to kill. Clearly there's no
sense of humor in the ER. "She had allergy tests yesterday, and
this is what happened."

"Is she taking any medications presently?"

"No."

"Benadryl," Ashley reminds me. "I'm also taking
insulin: aspart and Lantus."

"Except for dinner last night you took the lispro
instead of the aspart," I remind her. I look at the nurse, whose
pen is hovering over the page waiting for us to decide. We're the
medical equivalent of Laurel and Hardy. "She's taking aspart,
lispro and Lantus."

"Are those insulins?" She doesn't think we're funny.
I don't think it's particularly funny that she don't know what
aspart, lantus and lispro are.

"Yes." She writes that down. Just "insulin."

"Anything else?"

I look at Ashley and she shakes her head. "No."

"Any allergies?"

I think she must be joking, but there's no humor
here, so I point again to Ashley's arm. "Clearly she's allergic to
something."

"And do you know what that is so I can write it on
the chart?"

"If I knew that I wouldn't be here, would I?"

"Ma'am, I'm just trying to do my job. There's no use
being snippy with me."

"I was thinking the exact thing." We stare like two
dogs in a fight before she looks back at her paper.

"So no known allergies?"

"No." I sigh.

"And are you the parent or guardian?"

"I'm the parent."

"And your name?"

"Babs Babcock."

"I need your official name, please."

"That is my official name."

"I mean, your given name, not a nickname."

"That is my given name."

"Babs Babcock?"

I can feel myself getting hot under my collar. Ashley
still has the giggles. "Yes. That is my given name. Actually my
given name was Babs Deanne Walker, but then I got married and my
name officially became Babs Walker Babcock."

"Your parents named you Babs?"

"Short for Barbara, except my mother was Barbara and
they didn't want people confusing us. Is this important to my
daughter's condition?"

"And you just happened to marry someone named
Babcock?" She has stopped writing now and her eyebrows are so
puckered they almost touch.

"Is a doctor coming soon? I'd like someone to see my
daughter before her arm blows up. Is that possible?"

She seems not at all pleased with me and scoots out
her chair with a loud fingernail-across-the-blackboard scraping and
holds out her hand. "I need your insurance card, please."

"Of course." At last something that's relevant. "We
wouldn't want to leave without making sure you know where the
money's coming from, would we?" I hand it to her, and she snatches
it from me and leaves.

Ashley bursts out laughing. "Willy Wonka? Do I look
that bad?"

"Well, you ain't pretty," I say, trying to smile. But
as I look at her wiping happy tears off her cheeks, I think just
the opposite.

~~~~

Dr. Benton shows up a few minutes later, his hair
still wet, wearing running pants and a black t-shirt. He could be
some model in a Calvin Klein ad.

"Sorry it took a while to get here. You caught me at
the gym. So you gave Nellie a hard time?" The twinkle in his eyes
told me I wasn't the first to get her goat. "What have your blood
sugars been the last 24 hours?"

I hand him the logbook where Ashley's writing down
everything she eats and the time and amounts of her shots. He
glances through it. "Is there any reason you know why your readings
have gone up in the past day? Anything you ate that is hard to
calculate? Any snacks you didn't write down?"

Ashley shakes her head.

"I know your mom is here, but you need to tell me the
truth. It's really important. We need to find why your blood sugar
has gone up 250 points when you haven't eaten anything. Did you
miss a shot?"

I think Ashley's going to cry when she shakes her
head. "Honest. I didn't eat anything."

He looks at me and I nod.

"Okay, then, I'm going to look at where the allergist
gave you the shots. It won't hurt. I just want to see which ones
gave you the most trouble back here."

He examines her without any other words. When he
finishes, he just says, "I'm going to find the allergist who did
the shots. Can you wait a few more minutes?"

He don't wait for an answer because we aren't going
anywhere.

"I don't think he liked what he saw," Ashley
says.

"Nonsense. He sees stuff like this all the time. It's
just an allergy. We'll find out what it is that you're allergic to,
and then we stop using it."

It takes a long time before he comes back, the doctor
from yesterday in tow. They both look again, without talking, and
they leave again.

"Something's wrong," Ashley says. "He's always really
nice. He always jokes with me. What do you think is wrong?"

"Nothing's wrong," I say, but I don't believe it. I
see the same thing Ashley does, and it ain't good.

When he comes back, he's alone. He pulls up a swively
chair, and the twinkle is completely gone.

"What is it?"

"Well, it looks like I was right. Ashley has an
allergy to insulin."

"So we just switch, right? That's not too bad,
right?"

"It's not that easy. She doesn't have an allergy to
just aspart or lantus or any of the others. She has a systemic
allergy to all of them."

I search his face for some sign that he's kidding us,
but there's nothing. I feel Ashley stiffen beside me. "But I need
insulin. Don't I? Don't I need it to stay alive?"

"Yes."

"But I'm allergic to it?"

"Yes."

"Then there's something else, right? Something else I
can take?"

"No. There's nothing else."

Ashley looks at me wide-eyed and scared. I'm out of
my body, watching this like a scene out of a movie, because this
cannot be happening. People who need to take insulin to stay alive
don't become allergic to it. God wouldn't do that to people. God
wouldn't do that to Ashley.

"This happens. It's really rare, but it happens. You
have a systemic allergy. That means it's not just one part of your
body, like the place where you give yourself a shot, which reacts.
Your whole body is reacting to the insulin."

"Does she have to take medicine on top of the insulin
then? Something that keeps her from rejecting it?"

"That's a start, but it isn't that simple. If we keep
giving her this amount of insulin, her body is going to continue to
reject it, and more forcefully. Already, in just a small timeframe,
she has hives all over, and the insulin itself isn't even working.
That's why her blood sugar is so high."

"Am I going to die?" Ashley's voice is freakishly
high.

"Of course not," I say. Dr. Benton doesn't say this.
What he does say are the words I don't want to hear.

"We need to admit her into Children's Hospital
again." He stands and lays his hand on Ashley's good shoulder. "We
need to get on top of this quickly. There are a couple avenues we
can take. The first is to get you on some stronger antihistamines,
to see if we can't get your reactions under control. Also, we're
going to take you off the shots and put you on a subcutaneous
insulin pump."

"A what?"

"An insulin pump. It's a little machine the size of a
cell phone that will deliver insulin through a tube directly into
her abdomen."

"I'm going to have to be hooked up to a machine?"

"A very little machine."

"For how long?"

"If it works, forever. The good news is you'll be
done with shots. The pump will act in place of the shots, kind of
like your own pancreas. It will give you a lot more freedom
eventually to live a more normal life, too."

"How can it be normal if I'm hooked up to a machine
all the time."

"A very small machine. I guarantee almost no one will
even notice." When Ashley raises her eyebrows at him, he lifts his
shirt and pulls a black gadget off his belt clip and holds it out
to her. A tiny tube runs from the bottom of the pump and disappears
into his sweats.

She holds the pump, small enough to clamp in her
fist, and stares at Dr. Benton. "You have diabetes?"

He nods and takes the pump back. "Since I was
three."

"Why didn't you tell us?" I ask.

"Is that the first thing you want people to know
about you?" A look of understanding passes between them "I need to
shuffle my appointments around today and take care of a few things
at the office before I get to Children's Hospital. I'll phone them
and let them know you're coming and have them get a room ready. You
need to prepare for at least a few days. Can you do that?" I nod.
"Okay, then. Have you eaten this morning?"

"No," Ashley answers.

"Don't eat. Can you do that?"

"Yes. I'm not really hungry anyway."

"The high blood sugar will do that to you. You do
need to drink as much water as possible, though. And throw out your
aspart, but keep the lispro, okay? Lispro is less likely to cause
allergic reactions, so that's the one we'll try in the pump."

"What about the Lantus?"

"Throw it out too. The pump uses only one kind of
insulin. That will help, too, with the possible allergic reactions.
Any other questions before you leave for the hospital?"

"Will this work?" This is me asking, but I see the
question in Ashley's eyes, too.

"Maybe." Dr. Benton sits down again. "It might work,
but it might not. I told you this is pretty rare. The combination
of antihistamines, some good immunosuppressants, and the pump take
care of the problem in about half the cases."

"Half? What about the other half?"

"Then we move on to something else."

"What else is there?"

"Maybe we should take it one step at a time. Let's
see if this works. If it does, there's no need to worry about what
else."

"I want to know," Ashley whispers. "What are the
other options?"

He seems to study us before answering, as if he is
trying to see if we can take the news. "If it doesn't work, we'll
try something called desensitization. It's the same kind of thing
we do with people with hay fever and grass allergies. We give shots
a little at a time of the substance, increasing the amount until
you build a tolerance to it."

"You're going to keep giving her the stuff that's
making her look like this?"

"Yes. But not in these quantities. In much smaller
quantities, so she doesn't have quite the reactions."

"But won't her blood sugar be really high if she's
not getting enough to begin with?"

"Yes. Which is why we'll need to keep her in the
hospital. We'll have her on a special diet, probably mostly through
an IV, and watch her very carefully."

"Does that usually work?" It seems to me if that
would take care of the problem we should start there.

"Sometimes. Sometimes not. I'm not trying to be a wet
blanket here. I just want to be honest."

"Has anyone ever died because nothing worked?" This
is Ashley again, and I'm surprised she can ask the hard questions I
can't make myself ask.

Dr. Benton doesn't answer for a minute. He looks like
this is as hard for him to answer as it is for her to ask, and I
know before he opens his mouth what the answer is going to be.

"Yes." He takes a deep breath. "But very few. Rarely.
Very rarely. And I'm not going to let that happen to you,
okay?"

I know he can't promise this, but Ashley has complete
trust in him, and I let the sentence rest in air.

"Go pack your things. I'll see you this afternoon in
Austin. We're going to get you better, okay? This is just a blip on
the radar screen. Next year you'll look back on this as just
another page in your diary. Or in your scrapbook. Or wherever you
ladies keep that information these days."

When he leaves, I expect Ashley to cry, but she
don't. She's quiet until we get to the car, when she suddenly
blurts out, "The youth group is having a movie night on Saturday.
Do you think I'll be back in time to go?"

This is twelve. I know, because I remember it, and
it's so normal it makes me laugh out loud. Ashley frowns at me like
I'm making fun of her, but I'm mostly just amused at the equal
level of importance she gives her health and a social
gathering.

"Well?"

"Probably not, sweetie. But there will be
others."

She pouts a bit on the way, and for the first time
since puberty struck, I'm enjoying it.

~~~~

After a few days it becomes clear the first course of
treatment ain't working. Ashley's reactions worsen, and she starts
the funny breathing thing she did before she was diagnosed. She
gets a little to eat--chicken and broth and sugar-free jello; even
fruits and vegetables have too many carbs. She's hooked up to an IV
too, for extra fluids and vitamins, but she whittles down to
nothing but bones under skin stretched thin. The hives break out in
other places than her arms and belly, and none of the medicine they
give seems to help her itching. For the first day or two she's
restless at the hospital. She reads a bit, and uses my phone to
text her friends, and discovers the addictiveness of daytime soaps.
She wanders down to the arcade, but most of the kids there are
siblings of sick kids, and she feels self-conscious about her
looks, so she ends up in her room most of the time.