100 Days (27 page)

89

AGNES

DAY 12: JUNE 13

Dr. Caslow comes into the room after I've changed into a gown and climbed up onto the paper-covered exam table. Right off the bat, I don't like how he's smiling at me. It looks like he had to arrange his face before coming in here. I know my doctor's real smile, and this one isn't it.

Sitting in the magazine chair, Mom notices, too. “What's wrong?” she demands before he can even get a word out.

The smile falters. “I don't like the look of the latest round of scans and blood work,” he tells us. Exhaling, he looks at me. “I was reviewing some of your tests from a couple of years ago, some of the baseline stuff we did.”

“And?” Mom looks worried.

“And the news is not necessarily good,” he tells her. “This latest round of results indicates that we could be getting into some issues with the heart. Specifically, I'm concerned about the condition of Agnes's arteries. The statins don't seem to be doing as much as we'd hoped.”

I swallow involuntarily.
So here it is,
I think.
The bogeyman that's been hiding under my bed for the past fourteen years, ever since I was first diagnosed.
I recall the tightness in my chest recently, the episodes of breathlessness I haven't wanted to tell anyone about. Now it's all coming down to this:
issues with the heart.
It's what almost always gets progeria kids. Cardiovascular disease. Heart attacks, stroke. I shouldn't be as shocked as I am. I had the blood vessels of a seventy-year-old by the time I was in fourth grade.

“Are there other options?” Mom asks him.

The doctor looks doubtful. “There are experimental drugs being tested, as you know. But there's no magic fix for this artery issue. How I wish there was.”

Mom pulls a tissue from a box on the counter next to her. She holds it to her nose and stands up abruptly. “Excuse me,” she says, her voice breaking. “I have to leave for a moment.”

As soon as the door closes behind her, I look at Dr. Caslow. “It's all downhill from here,” I say, “isn't it?”

The fact that he doesn't answer right away is answer enough. “Well, we're going to try not to think that way, Agnes.”

“But it's the truth, right? What's the point of trying not to think about the truth?”

He puts one of his hands on top of mine. “We're going to try to keep a positive outlook.” A vein on the side of his head has started to throb.

“I'm sorry,” I tell him. I grab a tissue from the box and wipe at my eyes. I want these tears gone by the time Mom returns. “I'm really not trying to be a pain. It's just that my parents are going to have a really hard time with this, and … it's a lot of pressure, you know?”

“It's more pressure than I can imagine. But your parents are strong, Agnes. You need to let them be there for you.”

When Mom comes back into the room, Dr. Caslow says, “Agnes and I were just talking about how important it is to stay positive, even though this is a scary time. So, I want to have some more blood drawn today, just to verify what I'm seeing. I've also scheduled a conference call for tomorrow afternoon with some specialist friends of mine back East. I'm putting a rush on the blood work, so I should have the newest results back when I talk to them. I will call you as soon as I have more information, okay?”

Mom nods.

“Until then, chin up,” he tells her, forcing another smile. “Still okay to leave a message on your machine?”

“Yes,” she says, looking at me. “It's fine.”

The phlebotomist has a heck of a time finding a vein, which means I'll have to wear a long-sleeved shirt tomorrow to cover the bruising from the needle. Once I'm all bandaged up and we're back in the car (which is warm from being parked in the sun), Mom immediately goes into disaster-management mode. “I need to call your father, tell him what's going on. That things are … not going in the direction we'd hoped with that medication.”

“Mom,” I tell her, “it's okay. I feel fine.” Of course, that's not true. I don't feel
fine
at all. I haven't felt fine for a while now, and Dr. Caslow's news doesn't exactly help. But we knew this day was coming. It's not like anything he told us is a surprise, not really.

So why is it still such a hard pill to swallow? So to speak.

“Dr. Caslow was right,” Mom's saying, changing tactics. “We need to stay positive. Just tell me what I can do to—”

“You don't have to do anything,” I snap. “It is what it is.” Not only am I sick of the word
fine
, I'm sick of the word
positive
all of a sudden, too. I'm also irritated by how hard she's trying to make the situation seem less awful than it is, even though I know it's not fair of me to feel this way. She's scared. I need to be strong for her. I take a breath and soften my voice. “Do what you need to do,” I say. “Just let me be the one to tell Moira, okay?”

Mom just nods. She looks like she might burst into tears again at any second.

I let out a long sigh. Then, so she doesn't think I'm sighing in annoyance, I reach over and put my hand on her shoulder. I pat her gently, the way one pats a frightened child. Sometimes, the effort of keeping up appearances exhausts me. But this is new territory we're in. I have to be careful to not upset her more than necessary. If she starts panicking now, she's going to burn out by the time I really go into decline. And she'd never forgive herself for that. More than anything, I wish she didn't have to travel the road ahead. It's not going to be pretty.

 

90

MOIRA

DAY 11: JUNE 14

“How was the appointment?” I ask.

“Same old,” Agnes says, but there's an instantly recognizable note of false cheer in her voice. Plus, she won't look me in the eye when she says it. I wonder if part of her is still mad about the thing with me and Boone. Whatever it is, I'm going to tread carefully.

I don't want to lose her again.

 

91

AGNES

DAY 10: JUNE 15

If Mom could hear the message Dr. Caslow left on the answering machine, she'd freak. Fortunately, she's in the shower, getting ready for tonight.

“… sitting here looking over the latest blood work again,” he's saying. “I still don't love what I see. But you already know that. I'd like for you all to come in, if possible, so we can discuss … options.”

I'm not stupid. I know what those options are. Surgery on my arteries at the very least, on my heart at most. Extended hospital stays. Side effects from the loads of antibiotics and other medications. Recovery time that might not end in recovery at all. More wishing, more hoping, diminishing odds. Tons of money spent on all the things insurance probably won't cover. And for what? So I can live a long, healthy life? No. That ship has sailed. The possibility of my living a long life died the day I was diagnosed as a toddler. Actually, it died even before that, probably when I was still just a microscopic blob of unstable cells dividing in my mother's womb. As of today, my sixteenth birthday, I've already lived longer than most progeria kids. I'm one of the lucky ones.

Dr. Caslow doesn't even try to hide the emotion in his voice that comes through the tiny speaker next. “I'm just … I'm really very sorry.”

A rush of heat flows to my face, and I feel my eyes tearing up. It's not so much the news that makes this happen. It's the fact that Dr. Caslow is such a good guy. It's the fact that this “news” is going to hurt everyone I care about. I hear the sound of the shower shutting off, hear Mom moving around in the bathroom. Unsuccessfully blinking back tears, I reach my hand out toward the phone. I need some time to think about all this. I need some time to decide what I want to do before I'm checked into the hospital and stuck full of needles and tubes for good. I just need some time.

Mom agreed to let me spend the night at Moira's house tomorrow night, which is no small miracle. If she knew about Dr. Caslow's message, there's no way she'd let me go over there. He'll eventually call and leave another one, of course, but I'm hoping that will take a few days. I don't want the start of my sixteenth year being defined by this news. My finger hesitates over the answering machine only briefly before pressing the delete button.

*   *   *

At my birthday party that evening—dinner and
tres leches
cake at my favorite Mexican restaurant, Piñata Loca—our group looks like any other happy family out celebrating. Dad is there, as are Jamey and the kids. Isaiah sits next to me and acts all grown up while Obi and Nevaeh take turns wearing my birthday hat and asking Mom all sorts of random, whispered questions. Nevvie:
Did you used to be married to our dad?
Obi:
Do you know who Wolverine is?
Nevvie:
Are you married to anybody now?
Obi:
Do you think I
look
like Wolverine?
The interrogation goes on like this for a while, cracking me and Mom up, until Jamey gets wind of it and shuts the twins down with a Look of Doom. “I am so sorry,” she tells Mom, blushing.

“What did they do?” Dad asks her. When Jamey tells him, he groans and puts his face in his hands. Then he looks up at Mom, grins, shrugs, and rolls his eyes.

For some reason, it's not even weird to have the three adults together in one place like this. It's just … good. It fills me with gratitude.

When it's time to say good-bye for the evening and everyone's giving me hugs, I look each one of them in the eye and whisper, “I love you.” Dad and Jamey look a little shocked, but they whisper it back to me, as does Isaiah. Obi and Nevvie giggle and squirm at first when I whisper it to them. Each of them hugs me a second time afterward, though, and it almost seems like they don't want to let go.

*   *   *

“That was the best birthday ever,” I tell Mom later, when I'm in bed and we're saying good night.

“It was pretty great,” she agrees. She bends down to give me a kiss on the forehead. “Happy sweet sixteen, my extraordinary daughter.” She looks radiant. She looks happy. What I know everybody was thinking tonight but nobody said out loud is that we're lucky; I wasn't ever expected to make it this far. Thank God I erased Dr. Caslow's message, or this night never would have happened the way it did.

She's heading toward the door when I respond. “Hey, Mom?”

“Hmm?” She stops and turns around.

“Thank you for everything,” I tell her.

“You've already thanked me, silly girl.”

“No,” I say. “I mean for
everything
. Everything you've ever done for me for all these years, ever since you first found out you were going to have me. You're the extraordinary one.”

“Oh, honey,” she says, coming back to wrap me in a hug. “You don't have to thank me for those things. I'd do it all again in a heartbeat. I'd do it a hundred times over.”

 

92

BOONE

DAY 9: JUNE 16

“You're not going to play ‘Unhappy Birthday' for me?” Agnes asks her.

“No,” Moira says, staring straight ahead through the passenger side windshield of the Chevy. “I don't have the Smiths tape with me. Besides, it's too late. Your birthday was yesterday.”

El-C is out of commission again. Something to do with the starter, I assume, based on the symptoms Moira described to me over the phone earlier. She also said Agnes was begging to have another night out with the two of us as a sort of post-birthday celebration, since she spent her real birthday with her family.

“Is Deb okay with it?” I asked her.

“Agnes told me she was.”

I picked the girls up from Moira's house, and now here we are, the three of us cruising along in my truck listening to Waylon Jennings and Tammy Wynette instead of The Cramps or Violent Femmes.

“Yeehaw,” Agnes says.

I figure even Moira won't be able to resist “Stand By Your Man,” especially the part where Tammy basically disses the entire male species. But she's too distracted to notice.

Agnes chose the destination. To get there, we have to drive way out into the country and over a steep, curvy hill. More than a few local teenagers have gotten themselves killed on this road over the years while driving home drunk from the reservoir. It's been the biggest party spot in the county since it was first constructed in the sixties, and it's where Agnes insisted she wanted to be tonight.

She also demanded that she ride on the seat between me and Moira, unbuckled the whole way due to the fact that there are only two seat belts. Nothing we could say about safety or the law would change her mind. For a second, idling there in front of the Watkinses' house, I thought we might not go anywhere at all. But Moira finally relented after Agnes stared at her for a full, silent minute.

There aren't any other cars in the reservoir parking lot tonight. I park near the start of the trail that leads up to the water, and the three of us step out among the beer bottle caps and cigarette butts strewn all over the ground. A nearby sign says
NO SWIMMING, NO CAMPING, NO FISHING
.

It's not an easy hike to the water. About halfway up the trail, Agnes's breathing becomes labored. “I don't think I can go any farther,” she says. “Can we rest a little?”

“Let's just go home,” Moira answers. I know she doesn't like having Agnes out here one bit.

“No,” Agnes says. “I just need to catch my breath.”

I turn around and back up to her. “Well, hop on up, little lady,” I say, crouching as low as I can.

Agnes hesitates, but then, with Moira's reluctant help, she climbs onto my back and wraps her delicate arms around my neck. She weighs next to nothing. She definitely weighs less than she did the day I danced her around near the city water standpipe.