by Bibi Belford
“Hey,” I say to River. “Want to watch?” I flare my nostrils at Mr. Hawaii, just to let him know that the game is on. Watch your back, Surfer Dude. I grit my teeth. I can’t tell whether my head or my hand is shaking. I want to close my eyes, but that would be a mistake. I might poke into an important artery and bleed to death.
River stands very still with his hand on the edge of my bed. “It’s okay,” he whispers. “Breathe.”
I take a deep breath and let it out. Click. A tiny dot of scarlet appears. I don’t scream. In fact, I barely feel the prick, maybe because I’m expecting it or concentrating so hard.
“Ladies and gentlemen. I give you, Diva Dee the Wonder Girl. Draws blood on her first attempt. And her amazing trainer, Nurse Seigan.” He changes his voice. “It’s hard to be humble when you’re as great as I am.” Then he quickly takes the little remote control—the glucometer—and dabs my finger on the piece of paper on the end. He reads the numbers on the little screen. “Hmmm. What did they bring you for breakfast?”
I point to the breakfast tray and make a barfing noise. I’m surprised when River laughs.
“Ah-ha. You already peeked, didn’t you? So, you don’t care for gourmet hospital food? What can I say? Problem is, your diet is your friend. Eating is no longer a matter of love and like, but life and death.” Mr. Hawaii swings the tray in front of me. “Ooh, we’ve got the cold watery egg and the dry toast, have we? I think I can rustle up some better grub. And what about your friend? Can I bring you something?”
“Those breakfast potatoes with ketchup?” River’s voice has a funny accent. Sort of like talking with your fingers pinching your nose and dropping off the endings of words. Then he adds, “And cranberry apple juice, no ice.”
Me and Mr. Hawaii can’t believe it. “A regular, huh?” he asks River.
River nods and moves some curly-noodle hair so we can see his ears. I recognize the white, plastic-looking device I saw before. Sort of like a funny-shaped Bluetooth attached to both ears with a wire connected to a knob on his head.
“Cochlear implants,” River says. Then he holds up his two-finger hands. “And plastic surgery.”
“Wait, are you the famous ectrodactyly patient?” asks Mr. Hawaii.
“Me, that might be,” River says in a Yoda voice and winks.
Mr. Hawaii reaches out and shakes River’s two-finger hand. He bows his head. “It’s an honor to meet you,” he says in a deep voice.
“No, the honor is mine,” River says, trying to go even deeper with his voice.
They both laugh. “Matrix,” they say at the same time. I roll my eyes.
Mr. Hawaii turns to me. “River’s quite a celebrity at Westmont Hospital. A real inspiration. Now, if you’ll excuse me”—he opens the door—“I’ll be back.” And this time even I know he’s imitating The Terminator.
Mr. Hawaii zips out the door and right back in to collect the glucometer and the lancing device. “Just in case you decide to poke more holes in yourself, Diva Dee. And by the way, Orlando and I will be back later to teach you how to give injections.”
I can’t help myself. I know lines from movies, too. “Let it go, let it go!”
Mr. Hawaii pokes his head in again and smiles. “Frozen. Some people are worth melting for.”
“He’s nuts,” says River.
“Look who’s talking.” I make a funny face at him. “What’re you doing here, anyway?” I wonder if he keeps his hair long to cover his hearing aids. And what makes him so skinny. He even has a skinny nose. Maybe it’s his health problems.
“I came to visit you. And I brought you this.” He holds out a drawing. “It’s you—when you said you wanted to live in apartment Sky Blue, unit Macaroni and Cheese.” A girl with long, brown, wavy hair stands on a balcony facing a background of balconies, all colors and designs. Some have stripes, some have swirls, and one definitely has yellow macaroni and cheese on it. It’s really awesome but I’m a little embarrassed. It’s like he read my mind or something.
“Cool,” I say, thinking it’s nice to have someone visit besides family.
“Yah. My mom dropped me off early, before my audiologist appointment,” he says.
“Oh.” Okay, I admit I’m one tiny bit let down River isn’t here just to visit me. Then I tell myself to get a grip. We’re not even friends. He’s just my neighbor. A Star Trek weirdo.
Some people, Mami for one, would think it’s rude to ask River about his fingers. But don’t you want to know? And you’re not here, so it’s up to me. “What happened to your fingers and why are you an inspiring celebrity?” He doesn’t have to answer if he doesn’t want to.
He sits down on the edge of my bed and rolls one hand around the other. Over and over. Like he’s washing them without soap and water. Under his breath I hear him say, “I hate it when people say I’m inspiring.”
I look closer at his hands. Both hands have a split down the middle with one strangely shaped finger on each side of the split. A scar runs from the point of the V into the palm of his hands. Another smaller scar surrounds one of his thumbs and it sticks out at an angle. Whoa! Must have been a car accident. Or a fire. Maybe Mr. Hawaii will tell me if River doesn’t.
“Long story or short?” River says
“What?”
“My fingers.”
“It’s your story, you decide.”
“Birth defect. It’s called ectrodactyly. Inherited. Only happens to one baby in ninety thousand. Which makes me very distinct.”
“And why did Mr. Hawaii call you famous?”
“Mr. Hawaii?”
“You know, Nurse Seigan, with the Hawaiian shirt.”
“Oh. Well, people with ectrodactyly often also have hearing loss. I’m one of the hospital’s first patients to have a digit reconstruction and cochlear implants. Another distinction.”
So his fingers and his ears are messed up? And he was born that way? And he calls it distinct? I’d say stink is a better word. And it stinks I’ve got diabetes. And it stinks my friend Sandro’s little sister has a heart problem.
Papi must have known. He didn’t want a daughter with a disease. I wonder if everybody’s parents feel that way. But I don’t ask River. Instead I ask, “What are cochlear implants? Hearing aids?”
“No, not hearing aids. Hearing aids just magnify the sounds. It’s very technical. Sure you want to know?”
“Does a bear poop in the woods?” I hold up my pink bear. “Yes, I want to know.”
“Okay. Well, the implants have lots of parts. The microphone picks up the sounds and sends them to the speech processor,” River points at the Bluetooth thingy around his ear. “Then the transmitter and receiver send the code to the electrodes they put inside my inner ear and then it goes to my brain along the hearing nerve. You got all that?” River smiles. “Any questions?”
“Whoa. I might need a drawing. So were you deaf before the implants? And is everything normal now?”
“Not completely deaf. But hearing aids didn’t do much. And now I can hear, but it’s probably not exactly normal. I still have to read lips sometimes. And I couldn’t talk very well. Now I sound almost normal, don’t I?”
I don’t want to be rude, but it does take a while to get used to the way he talks. “Almost, except for your endings,” I say, careful about hurting his feelings and surprised with myself for worrying about it.
“I’m working on that at my school, with my speech therapist.”
“What school?”
“Learning Center for the Deaf. It’s in Duarton.”
“Everybody’s deaf and dumb? The whole school?”
“I can’t believe you just said that.”
“What?”
“Saying deaf and dumb is rude. Nobody says it anymore.”
“My brother says it. ‘Don’t be deaf and dumb, DeeDee.’”
River grabs the remote from my tray table and clicks off the TV. He squeezes his fingers together. He looks mad.
“I didn’t mean stupid-dumb,
” I say quickly. “I meant people who have trouble talking. You know, hearing impaired, or hearing disabled?” I’m not sure what the right words are. I never thought about this before. “No deaf kids went to any of the schools I went to,” I add.
“See,” River says. “This is the problem with all the deaf kids at one school. You don’t know a single deaf person. We aren’t hearing-impaired or hearing disabled. We’re hard of hearing. There’s nothing impairing us or disabling us. Nobody says you’re pancreas-impaired or pancreas-disabled because you have diabetes.”
“I didn’t say it to be mean. If you can’t hear, aren’t you disabled?”
“If you came to my school you’d feel disabled. You wouldn’t be able to talk to anybody because you don’t speak sign language. You wouldn’t even know how to ask to use the bathroom in Miss Swanson’s class, because she’s deaf. And following directions would be impossible for you, so good luck figuring out what the homework assignments are.”
“Okay, I get it.” Oh My Gatos. I’m sorry I said anything.
River keeps talking. “So you’d have to able yourself. You’d have to learn sign language. And to read lips. To pay attention to lights, not bells. Just like we do.” He sounds really irritated with me, as though I just dissed his favorite soccer team or insulted his mother. “I have distinctions that make me unique. Everybody does. They’re not handicaps.”
“Well, I’m sorry. I didn’t know.” I’m getting a little annoyed. I’m the one in the hospital. I’m the one who’s got diabetes. I’m the one he’s visiting. How dare he turn off my TV? I almost say, Oh My Gatos. Excuse me for living. But I don’t, because he starts talking again.
His voice is softer now. He sounds almost sorry he got so upset. “Don’t worry about it. You’re not the only one. A lot of people don’t even care to learn. The three ways to label people who can’t hear are ‘hard of hearing,’ like me, ‘deaf ’ with a lowercase ‘d,’ like my friends who can’t hear sounds, and ‘Deaf ’ with a capital ‘D’ for the Deaf community.”
“Oh,” I say, nodding my head, deciding I want to be one of the people who care to learn. Papi always wants to learn. He reads all the time. Whenever I’m stubborn about doing homework he says, “Loro viejo no aprende a hablar.” The old parrot can’t learn to talk. Then he says, “Mi Lora Hermosa,” and gives me a hug. I wish Papi would visit me in the hospital.
What if I never see him again? I stare at my hands. The hospital ID bracelet hangs loose on my wrist. Diaz, Dinora. Diabetic. DOB: 12/10/2008. Westmont Hospital. I close my eyes to stop them from watering.
“I’m going to transfer to a regular school,” River says, interrupting my thinking.
“Why?”
“Lots of reasons. Too many little kids. Only me and two others in fourth grade. And we don’t have art or music teachers.”
“No art and music? Those are my favorite classes.”
“Also, I want to experience being in a hearing learning environment. And I hate the bus. I’d rather walk to Robert Frost.”
Robert Frost? That’s my school. I don’t say what I should say. I go to Robert Frost. We might be in the same class. We could walk to school together. I know I should say it, and I know I’m a brat. It’s not because of his—distinctions. Well, it partly is, but not completely. It’s also his Star Trek talk and his big words. He’s kind of a geek, isn’t he? What if Noodlenose saw us walking to school together? I can just see how she would make fun of River. And me, if she thought we were friends. You know you would feel the same way. He’s better off staying at his hard-of-hearing school.
“How did they get those electrodes inside your ear? Did it hurt?” I say after a bit.
“Not really. They knock you out. Then they cut your ear open from the back. I have a scar.” He pulls up the transmitter so I can see, but I don’t look. You know how I am about needles and blood. “I didn’t even have to spend the night. But it doesn’t work right away. You wait until everything heals and then start the device.”
The door opens and Mr. Hawaii is back. He sets down two trays. “For you, Diva Dee, whole wheat pancakes with strawberries and low-fat whipped cream. And for you, Distinguished River, potatoes with ketchup and juice. Will there be anything else, my lady?”
The smell of the pancakes makes me appreciate Mr. Hawaii, just a little. If I have to be here, I guess I’m glad he’s my nurse. “Thanks,” I tell him. “I’ll be in touch.”
I watch River fix up his potatoes with his two-finger hands. He holds the ketchup packet between the two big sections of his right hand, and pulls the tab open with his left. Then he picks up the fork using his whole fist and starts shoveling potatoes into his mouth. “What?” he says when he notices me watching.
“I don’t know how you did that.” I open the syrup packet, imagining how hard it would be without all my fingers.
“Well, nobody knows they’re different until they try to live in a world made for people without congenital anomalies.” He holds up his hands. “That’s what they call these. Take this ketchup packet for example.” He picks up the used packet. “Just a little larger tab on the end would make about a thousand people’s lives much easier.”
“I never thought about that. Do you get mad at stuff?”
“Sometimes. But it’s always been like this for me, so I never knew any different. Glad I had surgery, though.” He wiggles his right hand fingers. “Ready for some big words?”
“Hit me,” I say.
“The transposition of my index metacarpal with reconstruction of my thumb web space makes things much easier.” He points to the scar running toward his palm.
“Oh My Gatos. How do you even say those words?”
He wiggles his thumb on the other hand. “And this wasn’t here. Can you keep a secret?”
“Cross my heart.” And there it is again. The thought that I don’t want to hurt his feelings. That we might be starting to be friends.
“It used to be my big toe.”
“Seriously? Your toe is your thumb?” I take a closer look. You’d never know.
“You’re the first person I told.”
“So did those surgeries hurt?”
“I was a baby for the first two, but my mom tells me I didn’t like them very much. When they cleaned up the scar tissue last year, I figured out why. Yowzers.” He pushes the juice glass to the edge of the tray so he can pick it up. “When are you going home?”
“Not soon enough. I have to be stable, whatever that means.”
“Where’s your mom? Mine always stayed with me.”
Well, la-di-da, I think. Not all of us have perfect lives. Just when I think we might be starting to be friends he gets all high and mighty. I’m about to tell him to mind his own beeswax. Then I remember Danny. So worried. And Mami. So sad. Plus stabilizing diabetes is probably not half as bad as River’s surgeries.
So I just act nice. “My mom and my brother have to work. My dad …” I stop. I have not told anybody about my papi. But River told me his secret. So I should tell him mine. I keep my voice even. Matter-of-fact. Not panicky. “My dad left. A couple of weeks before Christmas.” Nine weeks and five days, counting yesterday and today.
“What do you mean, left? He disappeared?”
I nod. “Supposedly he went to Mexico to take care of my great grandmother. But we haven’t heard from him. I don’t even think he knows where we moved to.”
“Why don’t you write to him?”
“I’ve never met my bisabuelita, or been to her house. We don’t know her address.”
“Oh,” says River, and he stands up. “Hey, I got to go. When you get out, come over. We’ll find your dad on my computer. I’m a good detective. Cross my finger!” And he wraps his thumb around his finger and grins at me. He opens the door and says, “Live long and prosper,” holding up his hand.
I wave back. My heart feels the same as River’s hand. Missing things. Doing the best it can. But then I see his drawing of me. Standing there, looking out at the
beautiful apartments I imagined. And I feel something very little plant itself in my heart. A little seed, a pepita of hope. I cross my fingers, on both hands, and make two wishes.
CHAPTER SEVEN
D IS FOR DIABETES
I just want to tell you, don’t go wishing for diabetes. It’s not a great way to get a week off school. Me and Mr. Hawaii spent a lot of quality time together while I was in the hospital. Now Mami won’t let me leave the apartment, so me and Mr. TV are spending time until I go back to school tomorrow. I wonder if Mr. RF, Robert Frost, missed me. Or anybody. Not that I care.
I’m getting pretty good at checking my levels with my very own lancing device and glucometer. I’m not quite as good at giving myself an insulin shot. Mostly Mami has to do it. In my belly, or my arm, or my leg, but not the same place twice in a row. All this for a person who hates needles.
But guess what’s the hardest? Balancing my diet. Fruit is good. But don’t choose bananas. Berries are the best. And expensive. Meat? Great. Eggs? Great. But be careful about adding tortillas and rice.
“Portion control,” the nutritionist told Mami.
“Self-control,” Mami told me.
“Out of control,” I told her. “That’s what this is.”
Before diabetes I ate Pop-Tarts, doughnuts, or Cinnamon Toast Crunch for breakfast, or nothing at all if I ran out of time. Guess what? Those are not good choices. I have a list of good choices now:
1) Peanut-butter-and-apple sandwich
2) Tortilla stuffed with scrambled eggs
3) Cheerios with strawberries
These are great choices if you happen to have an apple lying around. Or time to scramble eggs. And if you think strawberries last more than two seconds in our fridge before Danny or Danita pop them like candy, you’re wrong.
On the first day I came home from the hospital everybody acted so nice. I got a little bag from Danny and Danita. Bubble bath. Body wash. And my own perfume called Happy.
“So you can stop borrowing mine,” said Danny.
“Very funny,” I said.
Danita fixed my hair and painted my nails.
“So you can start looking like the diva you are,” said Danita.
