Everything, Everything Part 26

The words on the printout are not any different than the ones on the screen, but they feel heavier, more weighty. But they can't be true. There's no possibility of them being true.

I spend an hour googling each test, trying to understand what they all mean. Of course the Internet can't tell me if these results are correct, can't tell me if I'm a perfectly average teenage girl of perfectly average health.

And I know. I know it's a mistake. Still, my feet are taking me down the stairs and through the dining room to my mother's home office. She's not there, and not in the den. I head to her bedroom and knock lightly, hands shaking. She doesn't answer. I hear running water. She's probably in her bathroom getting ready for bed. I knock again loudly.

"Mom," I call out as I turn the handle.

She's just leaving the bathroom, turning out the light when I walk in.

Her still-gaunt face breaks into a wide smile when she sees me. Her cheekbones are sharp and more prominent in her narrower face. The dark circles that I put under her eyes seem to have become permanent. She's not wearing any makeup and her hair hangs loosely around her shoulders. Black silk pajamas hang from her thin frame.

"Hi, sweetheart," she says. "Did you come for a slumber party?" Her face is so hopeful that I want to say yes.

I step farther into the room, shaking the pages. "It's from a doctor in Maui." I look for the name again even though I know it. "Dr. Melissa Francis. Did you meet her?"

If I hadn't been watching her so closely I might not have noticed it, but she freezes. "I met a lot of doctors in Maui, Madeline." Her voice is tight.

"Mom, I'm sorry-"

She holds up a hand telling me to stop. "What is it, Madeline?"

I take another step. "This letter. She, Dr. Francis, thinks I'm not sick."

She stares at me as if I haven't spoken. She doesn't speak for so long that I begin to question if I had spoken after all.

"What are you talking about?"

"She says she doesn't think I have SCID. She doesn't think I've ever had it."

She lowers herself to the edge of the bed. "Oh, no. Is this why you came to see me?"

Her voice is soft, pitying. "She got your hopes up, didn't she?"

She gestures for me to come and sit beside her. She takes the letter from my hands and wraps her arms around me. "I'm sorry, but it's not true," she says.

I sag into her arms. She's right. I had gotten my hopes up. Her arms feel so good around me. I feel warm and protected and safe.

She strokes my hair. "I'm sorry you had to see this. It's so irresponsible."

"It's OK," I say against her shoulder. "I knew it was a mistake. I didn't get my hopes up."

She pulls away to look into my eyes. "Of course it's a mistake."

Her eyes fill with tears and she pulls me back into her arms. "SCID is so rare and so complicated, honey. Not everyone understands it. There are just so many versions and every person reacts a little differently."

She pulls away again and meets my eyes to make sure I'm listening and understanding. Her speech slows down and her tone turns sympathetic-her doctor's voice. "You saw that for yourself, didn't you? You were fine for a little while and then you were almost dead in an emergency room. Immune systems are complicated."

She frowns down at the pages in her hand. "And this Dr. Francis doesn't know your full medical history. She's just seeing a tiny fraction of it. She hasn't been with you this whole time."

Her frown deepens. This mistake is upsetting her more than it did me.

"Mom, it's OK," I say. "I didn't really believe it anyway."

I don't think she hears me. "I had to protect you," she says.

"I know, Mom." I don't really want to talk about this anymore. I move back into her arms.

"I had to protect you," she says into my hair.

And it's that last "I had to protect you" that makes a part of me go quiet.

There's an uncertainty to her voice that I don't expect and can't account for.

I try to pull away, to see her face, but she holds on tight.

"Mom," I say, pulling harder.

She lets me go, caresses my face with her free hand.

I frown at her. "Can I have those?" I ask, meaning the papers in her hand.

She looks down and seems confused about how they got there. "You don't need these," she says, but gives them back to me anyway.

"Want to have a slumber party?" she asks again, patting the bed. "I'll feel better if you stay with me."

But I'm not sure I will.

MADELINE'S DICTIONARY

sus*pi*cion (sspiSHn) n. pl. -s 1. The truth you don't believe, can't believe, won't believe: Her suspicion of her mother keeps her awake all night. She had a burgeoning suspicion that the world was laughing at her. [2015, Whittier]

Ident.i.ty

Carla's barely in the door before I'm on her with the letter. She reads it and her eyes widen with each sentence.

She grips my forearm. "Where did you get this?"

"Keep reading," I say. The charts and measurements will mean more to her than they did to me.

I watch her face and try to understand what is happening in my world. I'd expected her to dismiss the letter out of hand just as Mom did, but her reaction is ... different.

"Have you shown this to your mother?"

I nod, mute.

"What did she say?"

"That it was a mistake." I'm whispering, hiding from the sound of my own voice.

She searches my face for a long time. "We need to find out," she says.

"Find out what?"

"If it's true or not."

"How could it be true? That would mean-"

"Shh, shh. We don't know anything yet."

We don't know anything? Of course we do. We know that I'm sick. That I'm not allowed to leave my house on pain of death. I've always known this. It is who I am.

"What's going on?" I demand. "What are you hiding from me?"

"No, no. I'm not hiding anything."

"What does this mean?"

She sighs, and it is long and deep and weary. "I swear I don't know anything. But sometimes I suspect."

"Suspect what?"

"Sometimes I think maybe your mama's not quite right. Maybe she never recovered from what happened to your papa and brother."

The oxygen in the room is replaced by something else, something thin and not-breathable. Time does slow down now and I get a kind of tunnel vision. The walls are much too close and Carla recedes away from me, a small figure at the end of a very long hallway. Tunnel vision gives way to vertigo. I'm unsteady on my feet and then nauseous.

I run to the bathroom and dry heave into the sink. Carla comes in as I'm splashing water on my face.

She puts her hand on my back and I sink under the weight of it. I'm insubstantial. I'm Olly's ghost girl again. I press my hands into the porcelain of the sink. I can't lift my eyes to the mirror because I won't recognize the girl looking back at me.

"I have to know for sure," I growl, using someone else's voice.

"Give me a day," she says, and tries to pull me into a hug, but I don't let her. I don't want comforting or protecting.

I just want the truth.

Proof of Life

All I have to do is go to sleep-quiet my mind, relax my body, and go to sleep. But no matter how I will it, sleep just will not come. My brain is an unfamiliar room and trapdoors are everywhere. Carla's voice loops in my head. Maybe she never recovered from what happened. What does that even mean? I look at the clock. 1:00 a.m. Seven hours until Carla comes back. We're going to do some blood tests and send them off to a SCID specialist that I found. Seven hours. I close my eyes. I open them again. 1:01 a.m.

I can't wait for answers to come to me. I have to find them.

It takes all my effort to walk instead of run to my mom's office. I'm sure she's asleep, but I can't risk waking her. I grab the handle and for one horrible moment I think the door will be locked and I will have to wait and I cannot wait. But the handle turns and the room lets me right in like it's been waiting for me, like it's been expecting me.

Her office is perfectly normal, not too neat, not too messy. There are no obvious signs of an unwell mind. Crazy, jumbled, chaotic writings don't cover every inch of the wall.

I walk over to the big desk at the center of the room. It has a built-in file cabinet, so I start there. My hands are shaking, not a tremor, but actual shaking, like an earthquake that only I feel.

My mom is meticulous and extravagant in her record keeping. She's kept everything and it takes me over an hour to get through just a handful of files. There are receipts for big and small purchases, lease agreements, tax doc.u.ments, warranties, and instruction manuals. She's even kept movie ticket stubs.

Finally, toward the back I find what I'm looking for: a thick red folder labeled Madeline. I pull it out carefully and make myself a s.p.a.ce on the floor.

The record of my life starts with her pregnancy. I find prenatal vitamin recommendations, sonograms, and photocopies of each doctor's visit. I find a handwritten index card with two check boxes-one for boy and the other for girl. Girl is checked. My birth certificate is here.

As I search through, it doesn't take me long to realize that I was a sickly baby. I find pediatric sick-visit reports for rashes, allergies, eczema, colds, fevers, and two ear infections, all before I was four months old. I find receipts for lactation and infant-sleep consultants.

When I'm about six months old, just one month after my dad and brother have died, I'm checked into a hospital with Respiratory Syncytial Virus (RSV). I don't know what that is and I make a mental note to google it. It was severe enough to keep me in the hospital for three days.

And then her record keeping becomes less meticulous. I find a printout about RSV from the web. She circled a section that explains that RSV is more severe in people with compromised immune systems. I find a photocopy of the first page of an article on SCID from a medical journal. Her scrawls in the margins are illegible. After that there's a single visit to an allergist and then visits to three different immunologists. Each concludes that no illness was found.

And that's it.

I dig through the cabinet again for more files. It doesn't make sense that this would be all there is. Where are the test results? There must've been a fourth immunologist, right? Where's the diagnosis? Where are the consultations and second opinions? There should be another thick red folder. I scour the files for a third time. And a fourth. I spill other folders to the ground and rifle through them. I hunt through the papers on her desk. I thumb through the pages of her medical journals looking for highlighted pa.s.sages.

I'm breathing too quickly as I run over to her bookshelves. I pull down books, shake them by their spines willing something to fall out-a forgotten lab result, an official diagnosis. I find nothing.

But nothing is not evidence.

Maybe the proof is elsewhere. It takes me only one try to guess her pa.s.sword-Madeline. I spend two hours looking through every doc.u.ment on her computer. I search her Internet browser history. I look in the trash folder.

Nothing.

Nothing.

Where's the proof of the life I have lived?