The Girl in the Boat
The nurse presents my second daughter, but my eyes are still trained on my first across the room—too silent and large and blue in the hands of the doctors. My boyfriend shakes his head. I say: We’ll get through this. He kisses Lily, sticky and swaddled in my arms, stares at Daisy as she takes her first uncertain breath, and leaves. Two days, the doctors say. Two months. Two years. And then, we honestly don’t know; she could go at any time. The girls and I live with my parents. When Lily comes home from school, she watches TV with her sister, helps feed and change her. Nobody can reach Daisy like she can. Seems to laugh at her funny faces, seems to watch her color and finger paint. Everything is “seems to” because who can be sure? Both girls have my brown-speckled blue eyes but few would see a resemblance beyond that. Daisy’s head is abnormally large as if somebody had stuffed a globe inside, warping her brow, her nose, the space between her eyes. And like a globe, the inside of Daisy’s head is largely empty, occupied by only a small cephalic ocean.
On the girls’ fifth birthday, Daisy is brought to the emergency room in a Koala onesie after seizing during cupcake time. Born with only a brain stem and a hint of the cerebellum. Never to be voted the nicest, the most stylish, the leader of the pack in a yearbook. Never to go to school or fulfill a dream. The doctors say probably a lot. She probably hears but we don’t know if she can understand. Her eyes are fine, but there’s nothing to process images with.
I know she can recognize me, I tell them again.
In the waiting room, Lily eats Funions from the vending machines and builds a Lego pioneer wagon on the ground. Her grandparents buy her an ice cream from the cafeteria and a bear from the gift shop. She asks me if her sister is going to die.
Whenever I bring home Daisy from the hospital, which seems like every week for the first couple of years, I carry her everywhere. Already, we have beaten the odds. There is a fold-up playpen in the bathroom, in the kitchen, and in the basement next to the washing machine. Lily, though the same age as Daisy, has had to grow up fast. She asks me to look at what she did at school—a macaroni necklace, the Valentine’s Day cards she got in her construction-paper mailbox—but I only know about these things because I see them days during a rare moment of rest. My father lumbers to the dining table every morning and gives Lily the comics from the paper while he works on the Jumble. My mother wishes I would let them watch Daisy more, so I could take Lily out. “The poor girl doesn’t know what to do with herself,” my mother says.
“When Daisy gets better,” I say. “When I get a full-time teaching job.”
My mother waddles around the table, trying not to put pressure on her gout, and whispers into my ear: “Andrea, she’s not going to get better. We love her, but you can’t keep living like this. We can find someone to help.”
“She needs me. Besides, where are we going to find the money?” I point to the stack of unopened bills on the table. 2nd notice. 3rd notice. Envelopes from collection agencies. I am afraid if I leave Daisy for too long, what little spark resides in her will disappear entirely.
“She doesn’t even know who you are.” My mother holds her hand to her mouth after the words leave, wishing she could take them back. She picks up her bowl still half full of oatmeal and begins washing dishes.
At school, I set up a playpen in the corner of my first class. Daisy regularly has check-ups at the university children’s medical center, so it saves me the trip back home. I have managed to secure three sections of composition this semester as an adjunct, which means I might be able to pay the minimum for some of the medical bills. I have gotten used to the looks—the “I’m so sorry” look, the “you poor woman” look. One girl says she’s adorable. Another girl asks how old she is. Only one boy directly asks “What’s wrong with her head? Why’s it all big like that?” The girl next to him shoots daggers into his eyes. “What?” he says. “That’s some straight alien shit.” But I’m not angry. And I know it’s true. I haven’t talked about my daughter to anyone outside the family before. And, frankly, I’m sick of hiding. “She was born with a rare condition,” I begin. I want them to understand. Here, unlike the grocery store or the park, they have to stop and listen. And after the first class, I pack up my books and collapse the playpen. I drape a blanket over the stroller without even thinking about why, and rush to the next class to introduce my daughter all over again.
At Lily’s fourth-grade parent/teacher night, Daisy sits on my lap while Mrs. Lee, floating around the room in a floral muumuu, talks about student projects. Daisy is wearing jeans and a My Little Pony sweat shirt a size too small. Her eyes scans the room as if she is seeing for the first time. The other parents smile awkwardly. Daisy’s drool has created a large, dark circle on a shoulder of one of my three decent work blouses.
“Every student completed a portrait of a family member. They had to capture what they believed to be the essence of that person—their job, their personality, their hobbies, their favorite food,” explains Mrs. Lee.
The parents circle the room, browsing the brightly colored bulletin boards for the work of their children. I put Daisy in her wheelchair. Fireman, doctor, someone who likes spaghetti and meatballs, construction worker, and at the far end of the room is a portrait of a girl with a large head wearing a pink dress under a rainbow. The head takes up most of the poster board and inside it, Lily has drawn a stick figure girl in a boat on blue waves. No sail. No oars. Simply adrift.
“She said her sister is lost inside of herself,” says Mrs. Lee, standing behind me. “She’s a special girl, Lily. To think like that. She loves her sister very much.”
“She does,” I say. But I know it’s been hard, that at times Lily wants to hate her sister, the musty fold-out bed she shares with me, the way I rummage through Goodwill bins before the school year and during Christmas.
“And this must be Daisy. I was hoping I would get to meet you.” Mrs. Lee opens her mouth and pauses before leading me to the hall. “A close friend of mine had a daughter years ago. Cancer. She was eight.”
“I’m sorry,” I say.
“The reason I’m telling you this is because I saw what an illness can do to a family. I can see it some days with Lily. Like she’s still processing something that happened. My friend went to a support group down the street at the Lutheran church. She said it helped.” Mrs. Lee hands me a pamphlet for the group, squeezes my hands, and returns to the classroom.
I imagine myself in a dimly lit church activity room, sitting in a circle and saying my name. Hi Andrea, they would say in unison. A few years ago, I would have dismissed the idea without a thought. I examine the pamphlet with a photo of unreasonably happy people holding hands in a circle before putting it in my purse.
“Wish she wouldn’t parade that girl around town. I don’t know how much longer we can survive this. What if something happens to us?” Mom loves to talk dad’s ear off in the kitchen after she thinks everyone has gone to sleep. I tiptoe to the edge of the kitchen door.
“Don’t talk about her like that,” he says.
“You don’t think I care? It’s just that maybe we all would have been better off if she hadn’t beat the odds.”
“But she did.”
I spend most of my day thinking about that girl—how to keep her comfortable and safe and happy. I dream about a life she’ll never live: Daisy is flying a kite. We are fighting and Daisy storms out the door because she can’t go to a concert. She’s kissing a boy I don’t approve of. In this alternate reality, she is lithe and athletic with a competitive streak in contrast to Lily’s bookishness. She wears her hair in a pony tail tied with brightly colored scrunchies. And, oh, how she loves to laugh.
I wake up smiling when I have these dreams, and the weight in my chest suddenly evaporates. I want to believe for a split second that all of it was true. I look at Daisy, hooked up to a monitors and an IV, and think, I want to hear you laugh.
One summer weekend, I drop off Lily to a birthday party. These are the few glimpses I get of the kind of family life I once aspired to. The parents who throw parties live in tony neighborhoods with manicured gardens and joggers in spandex running beside yappy dogs. Before the door opens, I try to straighten my hair, yank out the wrinkles on my shirt with my hands. Usually the invitations include Daisy as a courtesy, but I’ve never taken up the offer. But on this day it is raining hard, so I walk Lily to the door with our lopsided umbrella. “Welcome, welcome.” The parents shuttle Lily into the family room where other kids are playing video games. They see Daisy in the car and insist we come inside.
Around the island in the kitchen, the parents mingle—talking vacations, people I do not know, summer camps that Lily would love. We are sitting down on the periphery and after everyone has introduced themselves, it seems like we are forgotten. Every so often, the hosts checks on us, says they are so glad we could be here. Right. I force a smile, take a sip of a mimosa. When one of the children runs into the kitchen and sees Daisy, she gasps. Her parents mouth a feeble sorry. And this is my cue. I thank the parents for having us, tell them I’ll pick up Lily later in the afternoon, and promptly leave.
Waiting in the dark hall of the Lutheran church, I watch the parents, the single fathers and mothers, file into the only lit room, as anxiety fills my veins. I am alone for the first time in recent memory. They all know each other: How are things? I’m so sorry, I just heard. Let me know if there’s anything we can do. I practice my introduction: My name is Andrea. My ten-year-old daughter Daisy was born without most of her brain. I don’t know if I’m just nervous about being new or speaking, or if it’s having to confront the realities of others on top of my own. Support groups are supposed to help, right?
“The free doughnuts help,” a young Indian woman approaching the room says. “First time?”
“That obvious?” I answer.
“It’s my third month. But I remember lurking in the hall. Marched right back to my car the first time.”
“And you’ve been coming back, so—”
“A lot of us have been going for years. Talking helps. But that doesn’t mean I want to listen to all of it. I come for the doughnuts and just being next to people who understand. I’m Diya, by the way. Shall we?”
I nibble on a cruller the whole hour and choose not to speak. There’s a man who lost his son to leukemia ten years ago, a couple with a daughter with cerebral palsy, and Diya, who talks about her son with autism and how something so seemingly small like asking for orange juice brought her to tears. “It’s the little things,” she says. “When you have children like ours.” Everybody nods. After the session, Diya invites me and the girls to join her and her son at the zoo the next weekend. She is smoking, and I ask for one more out of camaraderie than anything else. “I have these free admission vouchers,” she says. “I know we just met, but it might be nice to see someone from here outside of that Sunday school room.” After I had the girls, most of my friends slowly disappeared (maybe we did). We get birthday cards, a Facebook like. But not much else.
“Fuck ’em,” says Diya, referring to anybody who gawks at us walking down the zoo’s paths. Lily leads the way, skipping far ahead while Diya occasionally has to pull her son, Alok, back to the fold. Daisy, in a lion-shaped stroller, seems to be quietly enjoying the Serengeti. At the giraffe exhibit, Diya hands me a feeding ticket for small bucket of leaves. I struggle to carry Daisy out of the stroller and with Diya and Lily’s help, hold her up against the railing, so I can guide Daisy’s hands to the sky.
“We’re going to feed the giraffes, sweetie,” I say. I place a few leaves in Daisy’s palms and curl my hand over hers. “Look, here it comes!” I tilt Daisy’s head up. The giraffe leans in close, examining us. And for a moment it seems like the giraffe is studying Daisy, like it can sense something just out of human perception. Daisy makes a gurgling sound. And with his long, purple tongue, the giraffe slurps the leaves from our hands. Diya snaps a photo. A few feet away, Alok seems to be having a good time. One leaf, two leaf. The baby giraffe leans in and lingers just long enough for his hands to stroke its face. No leaf. And Alok begins screaming and kicks his bucket across the wooden walkway. Diya pulls away Alok from the exhibit, as people begin to stare and whisper to one another. Lily is still feeding, and I call out to her to catch up.
“I still have leaves,” she says.
“Now,” I say. I see her mumble something before leaving her bucket on the ground.
At the cafeteria, I thank Diya for the day. “We haven’t been able to treat ourselves to something like this in a long time,” I say.
“Same,” Diya says. “But you need to try. Makes you feel normal. Getting you those chicken wings for example. It’s always Alok, Alok, Alok. And that’s fine. But you forget to be decent to everybody else including yourself. Think that’s why my husband left.”
I don’t know what to say to that. Just like most people don’t know how to respond to Daisy.
“You’re lucky you have your parents,” Diya says.
“Sometimes. I don’t think my mother really sees Daisy like I do.”
“Like a person.”
“I don’t want to be that harsh. But, yeah.”
Diya pulls out her phone and shows me the photo of Daisy and the giraffe. It looks like Daisy is laughing, staring right back at the animal as if they are in on a big secret. If I told anybody about this day, about what I thought the picture captured, they wouldn’t believe me. Doctors would say possibly, but really would think I’m seeing things in my daughter that aren’t there. But, for me, the photo is proof that there is a girl on a boat on a tiny ocean inside of her, trying to make it to the shore.
Before I know it, I become one of those people in group who have been there for years. I measure the times I can’t bring myself to talk in the pastries I stuff in my mouth. It’s half-price admission today at one of those hands-on science museums, and we’ve made plans with Diya and Alok. I’m getting Daisy dressed, pulling a sweater over her head, when I feel her tremble. Her seizures usually don’t last longer than a few moments, but this time the shaking continues. I hold her tight as if she would crumble apart if I let go and call out to my father to get the car. It’s okay, it’s okay, it’s okay. I’m here. I’m here.
At the hospital, Daisy is sleeping, and I realize that I had dozed off, too, when a nurse walks in. My parents are in the waiting area, but I told Diya to go on to the museum and to take Lily. Outside our room, I see a bald little girl walking around with her family, holding a stuffed bunny rabbit almost as big as her. She waves. I wave back. I’ve become accustomed to the children’s ward here—the hope, the lack of it, the sounds of parents sobbing behind curtains, the fantasy castle wallpaper that is supposed to transport the patients to a happier place. But I need to hope for Daisy. I need to want something for her apart from my need for her to be alive. I flip through the television—another school shooting, a young protestor talking about their student loans and food stamps, a strike at one of the colleges I teach at. Fair wages. Child care. I think about the hospital bill when the nurse comes in and checks the IV.
Support Group Meetings: Bear Claw, Eclair, Sugar Glazed, Cherry Fruit Filling.
Daisy is still in and out of the hospital a month after her last bad seizure, and my parents have taken out a second mortgage to keep us above water. “Just throw our ashes over the Golden Gate Bridge or something,” my dad says. My mom says little, and I’ve learned to be okay with her resentment—I understand it, even. I have only received one class this semester, and have started to apply for other jobs—Target, Starbucks, anything I’m vaguely qualified for on Craigslist. The strike continues at school. Part of me wishes I could march with them, but I can’t afford to lose money. They carry signs that say “Education Not Administration” and “Support Your Teachers.” When I cross the picket line, my coworkers, many who probably know me as the woman with that kid, do not shame me.
When Diya finds out that I need to dress up as a lusty Statue of Liberty for a mattress store as part of their Memorial Day sale, she suggests helping me start a GoFundMe campaign. She comes over one day with a video camera, and helps me and Daisy dress up.
“You want to look good, but, you know, not too good,” Diya says.
“What are we supposed to say?”
“Just talk about Daisy’s condition. And I’ll splice that with some music and pictures of her growing up. Talk about the struggles you have as a mom, the medical bills donations will help with.”
“I don’t know,” I say. “It seems weird asking strangers for money.”
“Lots of people are doing this. If people want to help, let them.”
We shoot the video in our backyard with the sun behind us for angelic effect. Daisy is sitting beside me in her wheelchair. When Diya says action, I begin reciting the lines we rehearsed, but I feel like a carbon copy of Suzanne Sommers in those Save the Children commercials. For only five dollars you can really make a difference. We start over. “Let me tell you about a girl in a boat in the middle of an ocean. She has no oars, no sail, and the sea is calm. On a good day, she can see land, and there’s a glimmer of hope that she’ll make it, although she never will. Let me tell you about my daughter who was born without most of her brain.” I talk for longer than I imagined, as if I were teaching a class on Daisy. This is who she is. This is what she has. This is our life together. This is what the doctors say. And this is what I know to be true.
Within a matter of minutes, a Facebook friend of Diya’s donates twenty-five dollars.
“The first of many,” Diya says.
By the end of the month we have thousands of followers on social media. I’ve connected with other parents dealing with hydranencephaly, a young woman taking care of her older brother with MS, a young man with Down syndrome who lives with his best friend. For them, Daisy is more than just a good cause but a symbol of hope.
When Lily goes off to Oberlin on a full ride, it’s like part of the shore inside of Daisy has broken off. She is less responsive when I talk, smiles less, and is throwing up her food more than usual.
“Stay out of trouble,” Lily tells her sister. “I’ll be back before you know it.”
“You’ve earned this,” I tell Lily. “Look ahead. We’ll be fine here.”
“If anything happens,” she says.
“Go,” I say, starting to cry. She grew up and I missed it.
I hire a part-time home aid with Lily gone, and decide to stay home more, grading tests online. Mom and Dad, of course, are getting older, and I’ve been begging my mother to let me take her to the doctor to check out her fainting spells. She says it’s nothing, but I’m certain she’s lying. My dad thinks so, too.
“I’m old,” she says. “I’m supposed to be cranky and falling apart.”
“Doesn’t mean we can’t put a band-aid on whatever is wrong.” She shrugs me off whenever I prod her and tells me to mind my own business, which honestly pisses me off. And if it were just her being stubborn, maybe I would let it go. But she’s been different with Daisy, too. She rolls her granddaughter next to her while she watches The Bold and the Beautiful. Most of the time, they just sit there. But occasionally, my mother will turn to Daisy and talk to her.
“That one is having two affairs,” she says. “Her husband is a bore, so who can blame her?”
I don’t go to support group nearly as much as I used to. Tonight, Diya isn’t there, and there’s no one else I recognize, but I talk anyway. It’s probably one of only a handful of times I’ve opened my mouth in group: “Daisy has helped a lot of people see their children,” I begin. “And I think my mother has finally seen my daughter.” And maybe that’s all any of us can for hope for: to be seen with clarity. That’s all I’ve wanted for her.
It’s nearly midnight when my father and I hear the crash. I can see my mother’s legs on the floor as I approach the kitchen. A shattered glass kettle, her frail body, the coffee mug Lily painted in the first grade.
“Mom,” I yell. “Mom. Wake up!” But she remains still. My father’s hands are shaking on my shoulders. I rush to her, trying to clear away the shards on the ground. I can feel glass digging into my knees, as I lean over her, trying to remember the CPR training I received as a summer lifeguard when I was a teenager. Tilt head to clear airway, breathe, compress. I turn to look at my father. I hear my mom’s ribs crack beneath my hands.
“I’m here,” he says.
“Call 911,” I say. “Now. Dad, wake up! Mom needs help.”
“Nine-one-one,” he repeats. “Right.” He shuffles into the living room and returns with my phone, offering it to me. “I don’t know how,” he says.
At the hospital, the doctors say it was an aneurysm. Quick, unexpected, supposedly painless. The kind of death Daisy probably won’t have. We’ll have a small memorial over the summer when Lily returns, although I haven’t told her the news yet. This morning, I picked up her urn. Mom sits on the night table next to my father, and for every night after that night at the hospital, Daisy and I have slept at his side.
“She loved her, you know,” my father said after the doctor gave us the news. “Called her a beautiful child.”
A few days after the memorial, Daisy and Lily are in the living room watching movies like old times—Goonies, Mean Girls, Bring It On. It is the eve of their nineteenth birthday, and Daisy is having one of her better days. To date, the longest someone has lived with her condition is until their early thirties, but that’s a rare case, and I’m not necessarily hoping for that. Lily is dating someone but is being mysterious about the details, although she whispers things about a boy named Dave to her sister. We eat cake in the afternoon, and Diya and Alok join us for a trip to the planetarium’s family day. We’re all reclined back, looking at an ancient night sky. Our guide zooms in on a star that goes nova, washing the room in the purples and reds of a nebula. He talks about how this expanse of gas and dust and rock is the birthplace of planets, of new stars, and of us, how the iron in our bodies are remnants of stars. It’s strange how something so bright could flicker out and yet have meaning billions of years later, creating life on a planet so drastically different from another. I turn to Daisy and point her hands to the Little Dipper. “That’s you, Daisy,” I say. “That’s me.”