Positively Beautiful (37 page)

I walk down the cold hallway until I find her room. I stand outside, taking deep breaths. I scrub my cheeks, trying to remove the vestiges of my crying jag, put a smile on my face, and walk into the room.

She is awake, but barely. She tries to smile when she sees me but the effort is simply too much.

“I wanted,” she says slowly, “so badly to see you graduate.”

The words echo in the still room.

“You will,” I say. “You
will
. They'll patch you up and you'll be out of here in no time.”

She closes her eyes and turns her face toward the wall. I sit beside her and hold her hand while she sleeps.

Later that afternoon, she opens her eyes. For a moment, they are blank as a baby's, uncomprehending. Then they cloud with pain and despair. She knows where she is.

“I love you, baby,” she says, “more than I've ever loved … anything in my entire life. If I've done … nothing else in this world, I brought
you
into it … and that makes me so proud.” There is a long silence and she reaches up and brushes my hair out of my face. She says so quietly I almost miss it, “
Promise me, don't ever hide your beautiful face
.”

“Momma … I love you too. But don't talk like that. You're going to pull through this. I know you will.”

She lies still and quiet.

“
Hurts
,” she says at one point and she is so drugged the words are slurred, indistinct. “
Hurts so much
.”

I cry, but she is asleep and doesn't see me.

That night Jason and his mom arrive. I refuse to let Mom be by herself and they sit with her when I have to go to the bathroom, but I am selfish with her time. I stay with her by myself most of the night, singing and talking. She floats in and out, always smiling when she opens her eyes and sees me sitting there.

The next day, Jill arrives, and she is solemn and quiet after talking to Mom's doctor, but I refuse to listen to her when she tries to talk to me about Mom.

“No, no, no,” I cry. “
Stop it
. You have to keep believing, you can't give up on her. I won't give up on her, do you hear me?”

Jason holds me. Jill, looking weepy, goes in to relieve Miriam by my mom's bedside and I ignore the look that passes
between Jason and Miriam. And when Jill comes out an hour later I go back in.

My mom is crying, the pain is so intense, even though they have given her a pain button.

“I'm right here, Momma,” I say. “I'm not going anywhere. You're not going anywhere. I'll be right here when you wake up. Think about when you're better, think about all the things we'll be able to do. You need to get better by graduation so you can come. I need you there, Momma, don't you leave me.”

She squeezes my hand, and falls asleep.

Jill goes in when I come out, and Miriam says, “Erin, let's go get some coffee.”

I shake my head, but she is insistent. Finally I let her lead me to the cafeteria and sip at the coffee she puts in front of me.

“Erin, your mom is in a lot of pain,” she says.

“I know, I
know
,” I say. “She needs to hang on so the doctors can figure out how to make her better. She just needs to
hang on
.”

Miriam reaches over and holds my hand. “Erin, your mother is hanging on as best she can. For
you.
She is holding on for you. She is in a lot of pain, and she is dying. There is nothing left for the doctors to do.”

I'm shaking my head, going
no, no, no, nonononono
.

Miriam continues, her words hitting me like blows. “She is hanging on for you,
for you
, Erin. It's hard for mothers to let go, it always is, but you need to tell her it is okay, because she needs to, honey. She needs to let go. She needs to find her
peace. She needs to be released from her pain. It's time for you to say good-bye.”

I start crying, huge, gulping sobs. “I
can't
, I can't give up on her. I'm all she has, she's all I have.
I can't give up
.”

“You're not giving up, honey. You're letting go.”

She holds me until I stop crying, and we go back upstairs. Jason knows. He has been through this before, will probably go though it again. Without speaking he takes me into his arms and I fight to keep the tears at bay because I have to be brave. I don't know if I can do this thing,
but I have to be brave
.

Jill looks up as I come into the room, and she has been crying. She goes, and I climb onto the bed with Mom and hold her in my arms. Her body feels light and sighing, like a dry whisper with nothing left in it.

“Momma,” I say, and my voice breaks.

She opens her eyes and smiles when she sees me.

“Momma, I'm saying good-bye now. You—you've done an awesome job raising me and I will be
okay
. I will miss you.
I will miss you so much
, but—but I can do it on my own now. You did your job, you can rest. I'm going to be just fine.” I'm crying, but I make my voice strong so she can hear me, so she
believes
.

“Rinnie … ,” she says and the tears slip from her eyes. “I love you.”

“I know, Momma, I love you too. And …” I choke back the sobs that threaten to overtake me. “And, it's time for you to leave, Momma.
Let go
. Don't wait around for me any longer.
Please
. You can let go, I'll be fine. It's not good-bye. It's never
good-bye, because we'll see each other again. You can watch over me, be my angel, until I see you again.”

She reaches up her hand and pushes my hair out of my face. “
See you later, alligator
…”

“After a while, crocodile,” I say softly.

She falls asleep and I hold her, and wait.

It takes her another day to die, and she is in and out the whole time. But I stay with her, and she knows I am there when she opens her eyes, and I think she knows I am there when she is asleep as well.

I do not need the flatline monitor to know when her soul flies away. A butterfly-wing kiss brushes my forehead, and I lie with her for a while longer, feeling her body grow cold.

I get out of bed. Her eyes are closed, and she is so pale and beautiful, she looks like an angel already.

“I love you, Momma,” I say.

And then I go out to face the rest of my life without her.

Nine days after my mom's funeral, I attend my high school graduation. In the audience are the entire Levinson family, as well as Jill. They leave an empty seat beside Jill where my mom should have been. Jason sits on the other side of it, his face bright with his love for me. I smile at him across the crowd and he mouths
me too
, knowing what I mean.

As names are called and my proud-looking classmates go onstage to receive their diplomas, I look down at Memaw's sapphire ring on my finger. I know my mother and Memaw are inside me because my heart is stitched with their love and dreams, creating a unique quilt of lasting beauty. I miss Mom intensely. I miss her with every fiber of my being. But she is gone and I am here, and there is nothing I can do to change that. Mom and Dad and Memaw helped me weave the tapestry of my childhood, and now I must find my own pattern to follow.

I shuffle forward behind Caityln Baer, and above the stadium I see an airplane high in the sky, its engine just a faint thrum in my ears. I think about Mom's funeral. As I stood beside my mom's casket, I heard the roar of engines and looked up into the endless blue of the sky, my face touched by the warm sunlight. Led by Tweety Bird, three planes roared overhead in a V. One plane was missing in the formation, three planes when there should have been four. It was Stew's tribute to my mother, and I thought about how as we go through life we lose people we love, but we also gain some.

Caitlyn turns and gives me a nervous smile. “Hey,” she whispers. “I read your blog. Faith sent out a link to everyone. Wow. Just … wow.”

I smile back. Two days ago, I wrote my first blog entry for the BRCA website. I wrote about Mom's death, and while it was heart-wrenching, a sense of peace filled me when I wrote the last sentence. I stared at it, thinking about Mom, thinking about what she wanted for me, feeling her fingerprints on the tender surfaces of my heart. Then I pushed the Publish button, sending the blog sailing into the world, like a baby bird flying for the first time.
I'm doing it for you, Momma, but I'm doing it for me too.

By last night I had twenty comments, and something thawed in me as I read them and saw how people responded to my words. Courage is not always big and bright and loud; sometimes it's as silent and small as true words, a smile when you'd rather weep, or getting up every day and living with quiet dignity while all around you life rages. You cannot truly
love, live, or exist without courage. Without it you are simply biding time until you die.

I'm not saying I have all the answers. This summer I am going to stay with Aunt Jill as both of us learn to live with our loss, and Jason and Trina have both said they will come and visit me. I will go to college in the fall, but right now I don't know where. As alone as I've felt for a long time, it has been surprising to me how many people have opened their homes and hearts to me.

One day, I know, I will have to make a decision about my BRCA mutation. But I will not make that decision right now. Every tomorrow brings new challenges and joy. Life can be surprising and beautiful and tragic, and I plan on living it to the best of my ability. The days of my life are pearls on a string, some scratched and marred, some lustrous and pure, but all of them mine alone. It's not the ugliest, or the most beautiful of them, that define me, but all of them together that make me who I am.

“Erin Bailey,” our principal says. I take deep breath and walk across the stage to receive my diploma. The audience gasps. I look and see that every senior has a cell phone out, the screen set to a candle, holding it up toward me.

I smile, but I'm crying too.

I love you, Momma, and I'll never forget you. But it's my turn now and here I go. Watch me fly, Momma, watch me fly.

As I began my research on this story, I was—and am—amazed by the grit and bravery of ordinary people facing the unthinkable. However, I found that some in the BRCA community were uneasy with the subject matter of this book.

First, I was writing about a teenage girl, who I was told should not be even
thinking
about the breast cancer gene until she was at least eighteen, preferably twenty-one or twenty-five. How, I asked these well-meaning people, can you tell someone
not
to think about something? I'm sure this advice works for some, perhaps most, and they are able to go about their normal lives until it is time to tackle the issue of their possible BRCA mutation at an appropriate age. But what about those who can't stop thinking about it?

Second, these professionals were disturbed by the fact that Erin decided to test through a direct-to-consumer company, rather than through a genetic counselor or a health-care
provider. I understand their concerns. In fact, I share them. But books are not written about people who always make the right choices. This story is Erin's journey; every woman's journey will be different, and who can fault a teenager's desire to pursue answers, especially when she is encouraged not to even think about the questions?

When I began this book, I researched one of several companies that offered direct-to-consumer (without a doctor's order) genetic testing that included the BRCA gene. As of this writing, this company had suspended health-related genetic testing, dependent on FDA marketing authorization. This is a fast-changing and dynamic field, and I believe that for reasons of privacy, personal empowerment, or just plain curiosity, people will want and demand access to this type of personal genetic testing in the future.

It is important to note that at the time that I was researching this book, the company I used as a model only tested for three of the hundreds of known BRCA mutations. This fact was made very clear in their reports. However, if Erin didn't have one of these select few, she still could have carried another BRCA mutation. This highlights the importance of talking to a qualified medical professional about the results of any genetic test.