The Eyes and Ears of Love (2 page)

This isn’t my Emily,
he thinks.

Emily is such a joyful child, her energy used to be uncontrollable, practically bouncing off of every wall in their home. And now she’s confined to a bed and no one can help her not even Bentley. Emily always helped Bentley with his problems, especially girl problems. She has so much insight, regardless of her age. About a year and a half ago, Bentley went on a few dates with a girl in his sociology class; he liked her, and wanted to get to know her but she ended all communication with him after their third date. Bentley spent hours pacing back and forth in Emily’s room trying to investigate what happened.

Finally Emily said, “Give me your phone.” She spent time scanning through the text messages Bentley had with this girl and suddenly, she bloodcurdlingly screamed and threw his phone against the wall.

Bentley covered his open-mouth with disbelief. “Are you crazy?” he finally asked her.

“No, but are you crazy?” she asked, bug-eyed.

He picks up his phone and sees the cracked front screen. He was too in shock to speak.

“Well, I can tell you, I’m not surprised she stopped talking to your clingy behind!”

“Clingy? Me?” He pointed to himself. “No way.”

“Yes way. You texted her about your horoscopes being match-mates.”

“Well yeah, I mean, that’s what I read.”

“Well, you don’t have to share that with her,” she said slapping her palm against her forehead. She shakes her head, “I wouldn’t expect a call back, champ.”

Bentley thought her advice was overboard, but he hasn’t texted a girl about their horoscopes since. And now, he misses her melodramatic advice, it’s been a long road without it. He’s always been looking forward to giving her advice one day. But if she dies he’ll never be able to redeem himself to make up for all her wisdom. The one and only problem she has is fatal and it’s out of Bentley’s hands. It’s not fair. He wants to repay her, he owes it to her.

He focuses his attention back on her drawings and paintings. All the pictures are of the same thing. He looks back at her and then back at the images. He had thought she forgot. All the pictures show a huge building filled with hundreds of windows and on top of the roof is a great big garden with all the colors of the rainbow. In front of the building is a stick-figure of Bentley cutting a red ribbon with large silver scissors.

Instantaneously Emily wakes, coughing loud and rough. Bentley freezes, unsure if he should get Mable. Her eyes open and she scrambles to pour a cup of water from the pitcher on her nightstand. Her eyes water as the cough becomes more dry and painful. She struggles to hold the pitcher because her arms are thin and weak. Bentley snaps out of his frozen position and walks promptly over to her bedside to pour her a cup of water. She tries to smile at the sight of her brother, but the cough affects her ability to do so. He holds the cup for her while she gulps all the water down. She still has a slight cough so he pours her one more and she finishes the cup. She takes several minutes to catch her breath. A cough that powerful can take a lot of energy from her.

She finally smiles from ear to ear. It doesn’t seem like she’s angry with Bentley for not coming to visit her in almost three months. She begins to use sign language to communicate with him.

Emily was born without hair cells in both her ears. Without hair cells, hearing is impossible and neither surgery nor hearing devices can reverse her impairment.

What took you so long?

He looks down, not knowing how to answer this question.

She lifts his chin with her tiny hand.
I’ve missed you.

I’ve missed you too Emily.
He gives her an awkward smile.
I like your pictures!

Someone has to be the architect, since you are a terrible artist!

You little stinker!

You promised, remember?

Yeah, I remember. But the question is how do you remember? You were eight when I made you that promise!

That was only three years ago Bentley!

No one remembers details like that when they’re eight!

She shrugs her shoulders
. I guess even after three years, I still wish there was a unique facility for me and people like me. And you are always there for me so I know you are perfect to run it.
She bats her eyes.

Bentley shakes his head.
No, Emily I wasn’t always there for you. I have failed you as a big brother these last few months.
He pauses.
I’m sorry.

You’ve been a great big brother my whole life. It’s easier to be there for a deaf sister than a sister with cancer. You not being around these past months only shows me how much you love me.
She smiles.
I know you well enough to know you stay away from things that cause you sadness, but I don’t want to make you sad, Bentley.
She begins to cry.

He shakes his head.
You don’t cause me sadness, Emily. I only wish that I could take away all of your pain and because I can’t do that it makes me ashamed to be your brother because I can’t protect you.

The pain of you not being around is far worse than the pain of cancer.
She nods at him. They pause and stare into each other’s eyes.

So what should we name it?
He asks.

What?
She scrunches her forehead, pondering the question.

We never named the facility. It has to have a name.

She thinks for several minutes. Her face lights up.
The Garden Center for the Deaf and Blind!

He smiles.
Why “the Garden?”

Because you don’t need to see or hear the beauty of a flower. The smell is where the beauty lies.

He admires his sister’s poeticism for being so young.

She continues.
The Garden stands for something positive. The goal of the facility is to show that the physically impaired individuals have just as many opportunities as individuals without a disability, we just may have to work a little harder to get them.

He smiles.
It’s perfect.

She yawns and her eyelids begin to flutter closed.

I’m going to let you get some sleep now.

She shakes her head and her eyes widen, fighting it.

I promise I will be here when you wake up.

She dozes off quickly. Bentley pulls over two chairs, one to sit in and the other to rest his legs on. He stares at his dying little sister wheezing for fresh air.

There is a darkness taking over her body but her face accumulates a bright, welcoming light. She is neither strong nor healthy, despite her joyous and compelling attitude. She is only eleven years old, but she is mature enough to understand time is working against her. It’s hard for Bentley to fathom a countdown to death especially one of a child. The first week Emily moved into the hospital, the clock above her bed gave her anxiety and the nurses were nice enough to remove it from the room permanently. She couldn’t even handle the ticking of a wrist watch. She told Bentley, she felt as though a clock is keeping track of how much time she has left.

In November of last year, Emily was diagnosed with lung cancer after Mrs. Menichelli took her to a specialist. Emily developed a significant cough and trouble breathing earlier in the year and seven pediatricians tried to persuade her it was asthma. But after treatment for asthma failed over and over again, she was convinced it was something else, something seriously wrong. So she sought out advice from a specialist, Doctor Magnus. He immediately ordered a CT scan in which no human being could miss the golf ball size tumor on Emily’s right lung. The most devastating news was the tumor spread to her left lung and caused tissue damage to 40% of her vital organs. The doctor gave Emily a .78% chance of survival and approximately six months to one year to live. It is now April 10th, which means she has about one to seven months to live.

Bentley believes doctors shouldn’t be legally allowed to give a dying person a time limit. He thinks they should just say we will take it day by day so that the patient will get a fighting chance to live their lives to the fullest with what little time they have left.

Bentley closes his eyes and doesn’t leave his sister’s bedside.

           The next day Mr. and Mrs. Menichelli travel to the hospital after having been asked by Doctor Magnus to come and meet with him; Bentley tags along. They all anticipate the worst.

“Have a seat.” Doctor Magnus points to the chairs in front of his mahogany-finished desk. “How are you guys?”

Mrs. Menichelli nods.

He continues, “I think it’s best that we discuss the best plan for Emily right now.” He folds his hands atop Emily’s file.

“What do you mean?” Mrs. Menichelli asks with hostility in her voice.

“In December, Emily was moved into this hospital as an inpatient because she needed medical supervision 24-7. Well, we knew that she had six months to one year to live. It’s been about five months. I think the best action plan we have right now is to discharge her and move her back home.

“What?” Mrs. Menichelli snaps.

“I think it is in Emily’s best interest if she would be at home in a more comfortable environment surrounded by people she loves.”

“You said six months to one year? If we move her home, she’ll die. I want her here on this planet alive as long as possible and you said a year, so if staying at the hospital prolongs her life by six months then I’ll take that,” she says sobbing.

“Mrs. Menichelli, it will not matter if she is at the hospital or at home, she is going to pass at the same time. She can’t be helped anymore. I can’t help her, at least not medically. But love and support has been a significant factor in prolonging a person’s life with a terminal illness.”

“But…” Mr. Menichelli rests his hand on top of his wife’s, signaling her to let it go.

“When can we take Emily home?” Mr. Menichelli asks.

“As soon as I sign and forward all the discharge documentation.”

Within four hours, Emily is at home again, in her own bed. Mrs. Menichelli asked Bentley to remove every clock that would be visible to Emily from the house before Emily’s arrival. 

Emily spends the majority of her days and nights in her bed so Bentley put his television in her room so that she will not be bored when he’s not there. However, eventually, Bentley quit basketball even though Emily begged him not to. Watching her brother play basketball was one of her favorite things to do before she was diagnosed. The coach and team understands why he quit and let him keep his jersey because they still feel he is a part of the team. Shortly after, he stopped going to his classes too because he wants to stay home with Emily.

Bentley is becoming more in denial as the days pass that Emily will not be around forever especially when she has a good day. Unfortunately, it’s a 6:1 ratio of having bad days than good.

For the last three weeks, she has requested him to read her Cinderella before she goes to sleep.

And they lived happily ever after.
He reads beside her bed and closes the picture book.

Do you want to know the one thing that makes me the saddest to miss out on, Bentley?

Come on Emily. Let’s not talk about this. You’re not going to miss out on anything.
He reassures her.

Yes, I will. Dad says I can’t go on a date until I’m eighteen, so I’m not sad about missing prom because I wouldn’t be eighteen to have a date anyway. But I am sad that I’ll never go on a first date.

Why do you want to go on a date anyway?
He smiles.
Boys are pigs.

Well, I wouldn’t go out on a date with a boy; I would go on a date with a man, like you. I would date someone a lot like you. Someone I knew would never hurt me because real men don’t hurt women.
Bentley doesn’t respond.
But my date would have a fancy haircut like the prince in Cinderella!

He smirks and shakes his hair.
What about facial hair?
He rubs his hairy chin.

I like a man with a little hair. Makes him look rough around the edges.

He laughs hysterically.
What else?

A man who I could order chicken nuggets and a milkshake in front of without being judged for not ordering a salad and nonfat water!

They burst into laughter. Emily develops a roaring cough. She grasps the pillow beside her to help cope with the pain. Bentley reacts quickly by holding a glass of water that is by her bed so she can drink. She continues to cough while drinking. Bentley watches as blood coughs up into the glass and dilutes the water.

Mrs. Menichelli darts through the door.
That’s enough you two. Emily needs her rest,
she demands.

No. I haven’t finished telling Bentley about my first date,
Emily volleys back.

“We’re almost done mom. I’ll have her in bed in five minutes,” Bentley says.

Fine. Five minutes, young lady.
She leaves.

What else?
Bentley asks.