[Part 1] "Out of My Mind" by Sharon M. Draper

by Yaroslav11T kazuend Unsplash

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CHAPTER I.

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Words.

I’m surrounded by thousands of words.

Maybe millions.

Cathedral. Mayonnaise. Pomegranate.

Mississippi. Neapolitan. Hippopotamus.

Silky. Terrifying. Iridescent.

Tickle. Sneeze. Wish. Worry.

Words have always swirled around me like snowflakes—each one delicate and different, each one melting untouched in my hands.

Deep within me, words pile up in huge drifts.

Mountains of phrases and sentences and connected ideas.

Clever expressions.

Jokes.

Love songs.

From the time I was really little—maybe just a few months old—words were like sweet, liquid gifts, and I drank them like lemonade.

I could almost taste them.

They made my jumbled thoughts and feelings have substance.

My parents have always blanketed me with conversation.

They chattered and babbled.

They verbalized and vocalized.

My father sang to me.

My mother whispered her strength into my ear.

Every word my parents spoke to me or about me I absorbed and kept and remembered.

All of them.

I have no idea how I untangled the complicated process of words and thought, but it happened quickly and naturally.

By the time I was two, all my memories had words, and all my words had meanings.

But only in my head.

I have never spoken one single word.

I am almost eleven years old.

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CHAPTER II.

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I can’t talk.

I can’t walk.

I can’t feed myself or take myself to the bathroom.

Big bummer.

My arms and hands are pretty stiff, but I can mash the buttons on the TV remote and move my wheelchair with the help of knobs that I can grab on the wheels.

I can’t hold a spoon or a pencil without dropping it.

And my balance is like zip—Humpty Dumpty had more control than I do.

When people look at me, I guess they see a girl with short, dark, curly hair strapped into a pink wheelchair.

By the way, there is nothing cute about a pink wheelchair.

Pink doesn’t change a thing.

They’d see a girl with dark brown eyes that are full of curiosity.

But one of them is slightly out of whack.

Her head wobbles a little.

Sometimes she drools.

She’s really tiny for a girl who is age ten and three quarters.

Her legs are very thin, probably because they’ve never been used.

Her body tends to move on its own agenda, with feet sometimes kicking out unexpectedly and arms occasionally flailing, connecting with whatever is close by—a stack of CDs, a bowl of soup, a vase of roses.

Not a whole lot of control there.

After folks got finished making a list of my problems, they might take time to notice that I have a fairly nice smile and deep dimples—I think my dimples are cool.

I wear tiny gold earrings.

Sometimes people never even ask my name, like it’s not important or something.

It is.

My name is Melody.

I can remember way back to when I was really, really young.

Of course, it’s hard to separate real memories from the videos of me that Dad took on his camcorder.

I’ve watched those things a million times.

Mom bringing me home from the hospital—her face showing smiles, but her eyes squinted with worry.

Melody tucked into a tiny baby bathtub.

My arms and legs looked so skinny.

I didn’t splash or kick.

Melody propped with blankets on the living room sofa—a look of contentment on my face.

I never cried much when I was a baby; Mom swears it’s true.

Mom massaging me with lotion after a bath—I can still smell the lavender—then wrapping me in a fluffy towel with a little hood built into one corner.

Dad took videos of me getting fed, getting changed, and even me sleeping.

As I got older, I guess he was waiting for me to turn over, and sit up, and walk.

I never did.

But I did absorb everything.

I began to recognize noises and smells and tastes.

The whump and whoosh of the furnace coming alive each morning.

The tangy odor of heated dust as the house warmed up.

The feel of a sneeze in the back of my throat.

And music.

Songs floated through me and stayed.

Lullabies, mixed with the soft smells of bedtime, slept with me.

Harmonies made me smile.

It’s like I’ve always had a painted musical soundtrack playing background to my life.

I can almost hear colors and smell images when music is played.

Mom loves classical.

Big, booming Beethoven symphonies blast from her CD player all day long.

Those pieces always seem to be bright blue as I listen, and they smell like fresh paint.

Dad is partial to jazz, and every chance he gets, he winks at me, takes out Mom’s Mozart disc, then pops in a CD of Miles Davis or Woody Herman.

Jazz to me sounds brown and tan, and it smells like wet dirt.

Jazz music drives Mom crazy, which is probably why Dad puts it on.

“Jazz makes me itch,” she says with a frown as Dad’s music explodes into the kitchen.

Dad goes to her, gently scratches her arms and back, then engulfs her in a hug.

She stops frowning.

But she changes it back to classical again as soon as Dad leaves the room.

For some reason, I’ve always loved country music— loud, guitar-strumming, broken-heart music.

Country is lemons—not sour, but sugar sweet and tangy.

Lemon cake icing, cool, fresh lemonade!

Lemon, lemon, lemon!

Love it.

When I was really little, I remember sitting in our kitchen, being fed breakfast by Mom, and a song came on the radio that made me screech with joy.

So I’m singin’

Elvira, Elvira

My heart’s on fire, Elvira

Giddy up oom poppa oom poppa mow mow

Heigh-ho Silver, away

How did I already know the words and the rhythms to that song?

I have no idea.

It must have seeped into my memory somehow—maybe from a radio or TV program.

Anyway, I almost fell out of my chair.

I scrunched up my face and jerked and twitched as I tried to point to the radio.

I wanted to hear the song again.

But Mom just looked at me like I was nuts.

How could she understand that I loved the song “Elvira” by the Oak Ridge Boys when I barely understood it myself?

I had no way to explain how I could smell freshly sliced lemons and see citrus-toned musical notes in my mind as it played.

If I had a paintbrush . . . wow!

What a painting that would be!

But Mom just shook her head and kept on spooning applesauce into my mouth.

There’s so much my mother doesn’t know.

I suppose it’s a good thing to be unable to forget anything—being able to keep every instant of my life crammed inside my head.

But it’s also very frustrating.

I can’t share any of it, and none of it ever goes away.

I remember stupid stuff, like the feel of a lump of oatmeal stuck on the roof of my mouth or the taste of toothpaste not rinsed off my teeth.

The smell of early-morning coffee is a permanent memory, mixed up with the smell of bacon and the background yakking of the morning news people.

Mostly, though, I remember words.

Very early I figured out there were millions of words in the world.

Everyone around me was able to bring them out with no effort.

The salespeople on television: Buy one and get two free!

For a limited time only.

The mailman who came to the door: Mornin’, Mrs. Brooks.

How’s the baby?

The choir at church: Hallelujah, hallelujah, amen.

The checkout clerk at the grocery store: Thanks for shopping with us today.

Everybody uses words to express themselves.

Except me.

And I bet most people don’t realize the real power of words.

But I do.

Thoughts need words.

Words need a voice.

I love the smell of my mother’s hair after she washes it.

I love the feel of the scratchy stubble on my father’s face before he shaves.

But I’ve never been able to tell them.

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CHAPTER III.

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I guess I figured out I was different a little at a time.

Since I never had trouble thinking or remembering, it actually sort of surprised me that I couldn’t do stuff.

And it made me angry.

My father brought home a small stuffed cat for me when I was really little—less than a year old, I’m sure.

It was white and soft and just the right size for chubby baby fingers to pick up.

I was sitting in one of those baby carriers on the floor—strapped in and safe as I checked out my world of green shag carpet and matching sofa.

Mom placed the toy cat in my hands, and I smiled.

“Here, Melody.

Daddy brought you a play-pretty,” she cooed in that high-pitched voice that adults use with children.

Now, what’s a “play-pretty”?

As if it’s not hard enough figuring out real stuff, I have to figure out the meanings of made-up words!

But I loved the soft coolness of the little cat’s fur.

Then it fell on the floor.

Dad placed it in my hands the second time.

I really wanted to hold it and hug it.

But it fell on the floor once more.

I remember I got mad and started to cry.

“Try again, sweetie,” Dad said, sadness decorating the edges of his words.

“You can do it.”

My parents placed the cat in my hands again and again.

But every single time my little fingers could not hold it, and it tumbled back down to the carpet.

I did my own share of tumbling onto that rug.

I guess that’s why I remember it so well.

It was green and ugly when you looked at it up close.

I think shag carpeting was outdated even before I was born.

I had lots of chances to figure out how the threads of a rug are woven as I lay there waiting for someone to pick me up.

I couldn’t roll over, so it was just an irritated me, the shag rug, and the smell of spilled sour soy milk in my face until I got rescued.

My parents would prop me up on the floor with pillows on either side of me when I wasn’t in the baby seat.

But I’d see a sunbeam coming through the window, turn my head to watch the little dust things that floated in it, and bam, I’d be face-first on the floor.

I’d shriek, one of them would pick me up, quiet me, and try to balance me better within the cushions.

Still I’d fall again in a few minutes.

But then Dad would do something funny, like try to jump like the frog we were watching on Sesame Street, and it would make me giggle.

And I’d fall over again.

I didn’t want to fall or even mean to.

I couldn’t help it.

I had no balance at all.

None.

I didn’t understand at the time, but my father did.

He would sigh and pull me up onto his lap.

He’d hug me close and hold up the little cat, or whatever toy I seemed to be interested in, so I could touch it.

Even though he sometimes made up his own vocabulary, Dad never spoke baby talk to me like my mother did.

He always spoke to me as if he were talking to a grown-up, using real words and assuming I would understand him.

He was right.

“Your life is not going to be easy, little Melody,” he’d say quietly.

“If I could switch places with you, I’d do it in a heartbeat.

You know that, don’t you?”

I just blinked, but I got what he meant.

Sometimes his face would be wet with tears.

He’d take me outside at night and whisper in my ear about the stars and the moon and the night wind.

“The stars up there are putting on a show just for you, kid,” he’d say.

“Look at that amazing display of sparkle!

And feel that wind?

It’s trying to tickle your toes.”

And during the day he would sometimes take off all the blankets that my mother insisted I be wrapped in and let me feel the warmth of the sun on my face and legs.

He had placed a bird feeder on our porch, and we would sit there together as the birds darted in, picking up seeds one at a time.

“That red one is a cardinal,” he’d tell me, and “that one over there is a blue jay.

They don’t like each other much.”

And he’d chuckle.

What Dad did most was to sing to me.

He has a clear voice that seems made for songs like “Yesterday” and “I Want to Hold Your Hand.”

Dad loves the Beatles.

No, there’s no figuring out parents and why they like stuff.

I’ve always had very good hearing.

I remember listening to the sound of my father’s car as he drove up our street, pulled into the driveway, and rustled in his pocket to find his house keys.

He’d toss them on the bottom step, then I’d hear the sound of the refrigerator door open—twice.

The first time he’d get something cold to drink.

The second time he’d search for a huge hunk of Muenster cheese.

Dad loves cheese.

It doesn’t agree with his digestive system very well, though.

Dad also has the loudest, stinkiest farts in creation.

I don’t know how he manages to control them at work, or even if he does, but when he’d get home, he’d let them loose.

They’d start as he walked up the stairs.

Step, fart.

I’d be laughing by the time he got to my room, and he’d lean over my bed and kiss me.

His breath always smelled like peppermints.

When he could, Dad read to me.

Even though I know he had to be tired, he’d smile, pick out a book or two, and I’d get to go to Where the Wild Things Are, or to where The Cat in the Hat was making a mess.

I probably knew the words by heart before he did.

Goodnight, Moon.

Make Way for Ducklings.

Dozens more.

The words to every single book my father ever read to me are forever tucked inside.

Here’s the thing: I’m ridiculously smart, and I’m pretty sure I have a photographic memory.

It’s like I have a camera in my head, and if I see or hear something, I click it, and it stays.

I saw a special on PBS once on children who were geniuses.

These kids could remember complicated strands of numbers and recall words and pictures in correct sequence and quote long passages of poetry.

So can I.

I remember the toll-free number from every infomercial, and the mailing addresses and websites, too.

If I ever need a new set of knives or the perfect exercise machine, I’ve got that information on file.

I know the names of the actors and actresses of all the shows, what time each program comes on, which channel, and which shows are repeats.

I even remember the dialogue from each show and the commercials in between.

Sometimes I wish I had a delete button in my head.

I have a television remote control clicker attached to my wheelchair, very close to my right hand.

On the left side I have a remote for the radio.

I have enough control in my fist and thumbs to push the buttons so I can change the station, and I’m really glad of that!

Twenty-four hours of big-time wrestling or the home shopping station can drive a person nuts!

I can adjust the volume and even play DVDs if someone has popped one in the player for me.

Lots of times I watch Dad’s old videos of me.

But I also like the cable channels that talk about stuff like kings and the kingdoms they conquered or doctors and the diseases they cured.

I’ve seen specials on volcanoes, shark attacks, dogs born with two heads, and the mummies of Egypt.

I remember them all.

Word for word.

Not that it does me a lot of good.

Nobody knows it’s there but me.

Not even my mother, although she has this “Mom sense” that knows I understand stuff.

But even that has its limits.

Nobody gets it.

Nobody.

Drives me crazy.

So every once in a while I really lose control.

I mean really.

My arms and legs get all tight and lash out like tree limbs in a storm.

Even my face draws up.

I sometimes can’t breathe real well when this happens, but I have to because I need to screech and scream and jerk.

They’re not seizures.

Those are medical and make you go to sleep.

These things—I call them my “tornado explosions”— are pieces of me.

All the stuff that does not work gets balled up and hyped up.

I can’t stop, even though I want to, even though I know I’m freaking people out.

I lose myself.

It can get kinda ugly.

Once, when I was about four, Mom and I were in one of those superstores that sells everything from milk to sofas.

I was still small enough to fit in the child seat in the front of the cart.

Mom always came prepared and stuffed pillows on each side of me so I wouldn’t tilt.

Everything was fine.

She tossed toilet paper and mouthwash and detergent into the cart, and I looked around, enjoying the ride.

Then, in the toy section, I saw them.

Brightly colored packages of plastic blocks.

Just that morning I had seen a warning on television about that toy—they were being recalled because the blocks had been painted with lead paint.

Several children had already been hospitalized with lead poisoning, the report had said.

But there they were—still on the shelf.

I pointed to them.

Mom said, “No, sweetie.

You don’t need those.

You have enough toys.”

I pointed again and screeched.

I kicked my feet.

“No!”

Mom said more forcefully.

“You are not going to have a tantrum on me!”

I didn’t want the blocks.

I wanted to tell her they were dangerous.

I wanted her to tell somebody to get rid of them before a child got sick.

But all I could do was scream and point and kick.

So I did.

I got louder.

Mom rushed out of the toy section, pushing the cart real fast.

“Stop it!” she cried out at me.

I couldn’t.

It made me so angry that I couldn’t tell her.

The tornado took over.

My arms became fighting sticks, my legs became weapons.

I kicked at her with my feet.

I screamed.

I kept pointing in the direction of those blocks.

People stared.

Some pointed.

Others looked away.

Mom got to the door of the store, yanked me out of the cart, and left it with all her selections sitting there.

She was almost in tears when she got to the car.

As she buckled me in my seat, she almost screamed at me, “What is wrong with you?”

Well, she knew the answer to that one, but she knew that was not my usual behavior.

I gulped, sniffed, and finally calmed down.

I hoped the people at the store watched the news.

When we got home, she called the doctor and told him about my crazy behavior.

He sent a prescription for a sedative, but Mom didn’t give it to me.

The crisis was over by then.

I don’t think Mom ever figured out what I was trying to say that day.

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CHAPTER IV.

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Doctors.

Where do I start?

Doctors really don’t get me.

Mom’s a nurse, so I guess she speaks their language, but they sure don’t know how to talk to me.

I’ve seen dozens of doctors in my life, who all try to analyze me and figure me out.

None of them can fix me, so I usually ignore them and act like the retarded person they think I am.

I paste on a blank look, focus on one wall, and pretend their questions are too hard for me to understand.

It’s sort of what they expect anyway.

When I turned five, it was time to think about enrolling me in school.

So my mother took me to a doctor whose job it was to figure out how smart I was.

She wheeled me in, locked the brake so my wheelchair would not roll, and made sure the lap strap was fastened.

When my seat belt comes undone—and it does every once in a while—I slide out of that wheelchair like a piece of wet spaghetti.

The specialist was a very large man.

The bottom button of his shirt had come undone, and his stomach poked through above his belt.

Gross!

“My name is Dr. Hugely,” he said in a booming voice.

For real.

I couldn’t make this stuff up.

“We’re going to play a game today, okay?

I’ll ask you some questions, and you get to play with the toys here.

Won’t that be fun?”

I knew it would be a long, long hour.

He brought out a stack of well-used, hopefully not lead-tainted, wood blocks, then leaned in so close to me, I could see the pores in his face.

Gross!

“Can you stack these in order according to size?” he said loudly and slowly, as if I were hard of hearing and really stupid.

But who was being stupid?

Didn’t he know I couldn’t grab the blocks?

Of course I knew which block was bigger than the other.

But I couldn’t stack them if he paid me money!

So I just took my arm and swept them all to the floor.

They fell with a wooden clatter.

I tried not to laugh as he picked them up.

He breathed really hard as he reached for them.

Next, he held up glossy eight-by-ten cards with different colors painted on each one.

“Tell me when you see the color blue, Melody,” he said in that voice that told me he thought this was all a waste of time.

When the blue card showed up, I pointed to it and made a noise.

“Buh!” I said.

“Marvelous!

Tremendous!

Stupendous!” he shouted.

He praised me like I had just passed the test to get into college.

If I could have rolled my eyes, I would have.

Then he showed me green, so I kicked and made a noise, but my mouth can’t make the G sound.

The doctor looked disappointed.

He scribbled something on his clipboard, pulled out another stack of cards, then said, loudly, “I’m going to ask you some questions now, Melody.

These might be hard, but do your best, okay?”

I just looked at him and waited while he placed the first set of cards in front of me.

“Number one.

Which one of these is not like the others?”

Did he get this stuff from Sesame Street?

He showed me pictures of a tomato, a cherry, a round red balloon, and a banana.

I know he was probably looking for the balloon as the answer, but that just seemed too easy.

So I pointed to the banana because the first three were round and red, and the banana was not.

Dr. Hugely sighed and scribbled more notes.

“Number two,” he said.

He showed me four more cards.

This time there were pictures of a cow, a whale, a camel, and an elephant.

“Which animal gives birth to a calf?”

Now, I watch Animal Planet all the time.

I know for a fact that all the animals he had pictured there had babies called a “calf.”

I thought doctors were supposed to be smart.

What to do?

I hit each picture slowly and carefully, then did it once more just to make sure he understood.

I don’t think he did.

I heard him mumble “cow” as he wrote more notes.

It was clear he was giving up on me.

I noticed a copy of Goodnight, Moon on his bookshelf.

I think it was written in Spanish.

It was called Buenas Noches, Luna.

That would have been fun to look at, but I had no way of telling him I’d like to see the book.

After watching Sesame Street and Dora the Explorer a million times, and sitting for hours watching the Spanish channels, I could understand quite a bit of Spanish if it was spoken slowly enough—and at least enough words to read the title of that book.

He never thought to ask me about that, of course.

I knew the words and melodies of hundreds of songs—a symphony exploding inside my head with no one to hear it but me.

But he never asked me about music.

I knew all the colors and shapes and animals that children my age were supposed to know, plus lots more.

In my head I could count to one thousand—forward and backward.

I could identify hundreds of words on sight.

But all that was stuck inside.

Dr. Hugely, even though he had been to college for like, a million years, would never be smart enough to see inside of me.

So I put on my handicapped face and took my mind back to last summer when Mom and I went to the zoo.

I really liked the elephants, but talk about stink!

Actually, Dr. Hugely sort of reminded me of one of them.

My mom and the doctor had no idea why I was smiling as we rolled into the waiting room while he wrote up his evaluation of me.

It didn’t take long.

I’m always amazed at how adults assume I can’t hear.

They talk about me as if I’m invisible, figuring I’m too retarded to understand their conversation.

I learn quite a bit this way.

But this conversation was really awful.

He didn’t even try to soften the news for my mom, who, I’m sure, felt like she got hit by a truck.

He began by clearing his throat.

“Mrs. Brooks,” he then said, “it is my opinion that Melody is severely brain-damaged and profoundly retarded.”

Whoa!

Even though I was only five, I had watched enough Easter Seals telethons to know this was bad.

Really bad.

I felt a thud in my gut.

My mom gasped, then said nothing for a full minute.

Finally, she took a deep breath and protested quietly, “But I know she’s bright.

I can see it in her eyes.”

“You love her.

It’s only normal to have wishful thinking,” Dr. Hugely told her gently.

“No, she has a spark.

More than that—a flame of real intelligence.

I just know it,” my mother insisted, sounding a little stronger.

“It takes time to accept the limitations of a beloved child.

She has cerebral palsy, Mrs. Brooks.”

“I know the name of her condition, Doctor,” my mother said with ice in her voice.

“But a person is so much more than the name of a diagnosis on a chart!”

Good try, Mom, I was thinking.

But already her voice was losing its edge, melting into the mushiness of helplessness.

“She laughs at jokes,” my mother told him, the ice in her voice replaced by desperation, “right at the punch line.”

Mom’s voice faded.

What she was saying sounded ridiculous, even to me, but I could see she just couldn’t find the words to explain her gut feeling that I had some smarts stuck in here.

Dr. Hugely looked from her to me.

He shook his head, then said, “You’re lucky she has the ability to smile and laugh.

But Melody will never be able to walk on her own or speak a single sentence.

She will never be able to feed herself, take care of her own personal needs, or understand anything more than simple instructions.

Once you accept that reality, you can deal with the future.”

That was just plain mean.

My mom hardly ever cries.

But she did that day.

She cried and cried and cried.

Dr. Hugely had to give her a whole box of tissues.

Both of them ignored me while she sobbed and he tried to find nice words to say to make her feel better.

He didn’t do a very good job.

Finally, he gave her options.

“You and your husband have several decisions to make,” he told Mom.

“You can choose to keep her at home, or you can send her to a special school for the developmentally disabled.

There aren’t many choices here locally.”

Where do they get those almost-pleasant-sounding phrases to describe kids like me?

Mom made a sound that could have been the mewing of a kitten.

She was losing it.

Dr. Hugely continued.

“You can also decide to put Melody in a residential facility where she can be cared for and kept comfortable.”

He pulled out a colorful brochure with a smiling child in a wheelchair on the cover and handed it to Mom.

I trembled as she took it.

“Let’s see,” the doctor said, “Melody is, ah, five now.

That’s a perfect age for her to learn to adjust to a new environment.

You and your husband can get on with your lives without her as a burden.

In time, her memories of you will fade.”

I stared at Mom frantically.

I didn’t want to be sent away.

Was I a burden?

I never thought about it like that.

Maybe it would be easier for them if I weren’t around.

I gulped.

My hands got cold.

Mom wasn’t looking at me.

She was staring daggers at Dr. Hugely.

She crumpled up the tissue she held and stood up.

“Let me tell you something, Doctor.

There is no way in heaven or hell that we will be sending Melody away to a nursing home!”

I blinked.

Was this my mother?

I blinked again, and she was still there, right up in Dr. Hugely’s face!

She wasn’t finished.

“You know what?” my mother said as she angrily hurled the brochure into the trash can.

“I think you’re cold and insensitive.

I hope you never have a child with difficulties—you’d probably put it out with your trash!”

Dr. Hugely looked shocked.

“And what’s more,” she continued, “I think you’re wrong—I know you are!

Melody has more brains hidden in her head than you’ll ever have, despite those fancy degrees from fancy schools you’ve got posted all over your walls!”

It was the doctor’s turn to blink.

“You’ve got it easy—you have all your physical functions working properly.

You never have to struggle just to be understood.

You think you’re smart because you have a medical degree?”

He was wise enough to keep his mouth shut and ashamed enough to lower his head.

Mom was on a roll.

“You’re not so intelligent, sir— you’re just lucky!

All of us who have all our faculties intact are just plain blessed.

Melody is able to figure out things, communicate, and manage in a world where nothing works right for her.

She’s the one with the true intelligence!”

She marched out of his office then, rolling me swiftly through the thick doors.

In the hall we did a quick fist bump—well, the best I could manage.

My hands were no longer cold.

“I’m taking you right now and enrolling you at Spaulding Street Elementary School,” she announced with determination as we headed back to the car.

“Let’s get busy!”

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CHAPTER V.

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I have been at Spaulding Street Elementary School for five years.

It’s very ordinary—filled with kids, just like the schools I see on television shows.

Kids who chase each other on the playground and run down the hall to get to their desks just before the bell rings.

Kids who slide on icy patches in the winter and stomp in puddles in the spring.

Kids who shout and push.

Kids who sharpen their pencils, go to the board to do math problems, and open their books to read a poem.

Kids who write their answers on notebook paper and stuff their homework into backpacks.

Kids who throw food at each other in the lunchroom while they sip on juice boxes.

Kids who sing in the choir, learn to play the violin, and take gymnastics or ballet or swimming lessons after school.

Kids who shoot baskets in the gym.

Their conversation fills the halls as they make plans, make jokes, make friends.

Kids who, for the most part, ignore kids like me.

The “special needs” bus, as they call it, has a cool wheelchair lift built in the door, and it picks me up every morning in front of my house.

When we get to school, the drivers take their time and make sure all the belts and buckles are tight before they lower all of us with walkers or wheelchairs or crutches or helmets down on the bus lift, one by one, to the ground.

Then an aide will roll us, or help us walk, over to a waiting area.

When the weather is bright and sunny, we sit outside the school.

I like to watch the “regular” kids as they play four-square while they wait for the bell to ring.

They look like they’re having so much fun.

They ask one another to play, but no one’s ever asked any of us.

Not that we could, anyway, but it would be nice if somebody would say “Hi.”

I guess the four-square players must think we’re all so backward that we don’t care that we get treated like we’re invisible.

I was so excited when Mom first enrolled me here.

I thought I’d learn new things every day, but mostly it was simply something to do that took up time and got me out of the house.

In second and third grades I probably learned more from the Sci Fi or Discovery Channels than I ever learned at school.

My teachers were nice, most of the time, but they would’ve needed X-ray vision like Superman to see what was in my head.

I am in a special program with other children with what they call “disabilities.”

Our ages range from nine to eleven.

Our “learning community”—what a joke— has been together since I started school.

We never seem to move up and on like other classes.

We just do what we did the year before, but with a new teacher.

We don’t even get a new classroom each year.

So the same kids I’m with now were together in second grade with a teacher named Mrs. Tracy.

As third graders we suffered through Mrs. Billups, who could have got the award for worst teacher in the world.

There are six self-contained learning communities in our wing of the building—children with various conditions, from preschoolers to kids who ought to be in high school by now.

Our classroom, room H-5, might be nice for babies, but give me a break!

It’s painted yellow and pink.

One wall is covered with a sun with a happy face, a huge rainbow, and dozens of flowers—also with smiley faces.

The other wall is painted with happy bunnies, kittens, and puppies.

Bluebirds fly all over a sky with perfect white clouds.

Even the birds are smiling.

I’m almost eleven years old, and if I have to look at puppies in paradise one more day, I think I’ll puke!

Ashley, the youngest in our group, actually does puke quite a bit.

She’s nine, but she could pass for three.

She has the smallest wheelchair I’ve ever seen.

She’s our fashion model.

She is just plain beautiful— movie-star eyes; long, curly hair; and a tiny pixie nose.

She looks like a doll that you see in a box on a shelf, except she’s prettier.

Her mother dresses her in a perfectly matching outfit every day.

If she has on a pink shirt, she wears pink slacks, pink socks, and two tiny pink bows in her hair.

Even her little fingernails have been done to match.

When we do what the teachers and therapists call “group” activities, it’s hard for Ashley to participate.

Her body is really stiff, and it’s tough for her to reach or grab or hold anything.

Every Christmas they make the kids in H-5 decorate a stupid six-foot Styrofoam snowman.

I don’t know what the children in the regular classrooms get to do, but I know it’s close to holiday time when whatever teacher we have that year pulls this thing out of a closet.

Mrs. Hyatt, the kindergarten teacher, loved that messed-up snowman, just three huge balls of yellowing Styrofoam, stuck together with pins and pipes.

“Let’s decorate, children!” she said in her squeaky and annoying voice.

“We are going to place decorations with Velcro or toothpicks or glue—whatever works—on Sydney, our H-5 holiday snowman!”

I don’t know how old the snowman was at that point, but poor Sydney could not stand up straight.

It leaned like a drunk who needed the wall to hold it up.

Mrs. Hyatt gave us green snowflakes.

Green?

We were the dumb kids.

I guess we weren’t supposed to care.

Brown garland.

Stars in purple and pink.

“Do you like the snowman, Ashley?” Mrs. Hyatt asked her.

It’s almost impossible for Ashley to communicate because her body is so tight.

Her “talking board” has just two words on it—yes and no.

She turned her head slightly to the left for no.

I bet she wished she could knock the thing down.

Compared to Ashley, Carl is huge.

Even though he’s just nine, he’s got a special wheelchair that’s extra wide, and it takes two aides to lift him in and out of it.

But he’s good with his hands.

He can move his own chair, and he can hold a pencil well enough to write his name.

And stab a snowman.

Carl sticks pencils and rulers into the snowman’s torso and pens into its head.

Mrs. Hyatt used to clap her hands and say in her little squeaky voice, “Good job, Carl!

So very creative!”

Carl would just laugh.

He can talk, but only in very short sentences that usually have two parts.

He has very strong opinions.

“Snowman is dumb,” he’d yell.

“Very, very dumb.”

I think he hates the snowman as much as I do.

One year he pinned a diaper on the back and another on the front of the bottom third of the snowman.

The teacher let them stay.

Carl knows diapers.

When he poops in his pants, which is almost every day, the whole room smells like the monkey house at the zoo.

The aides are so patient with him, though.

They snap on their rubber gloves, clean him up, change his clothes—he always wears sweats—and sit him back in his chair.

Those aides deserve medals.

We’re not an easy bunch.

Maria, who has Down syndrome, is ten.

She loves Christmas and Easter and Valentine’s Day and Earth Day—it doesn’t matter.

If it’s a holiday, Maria is ready to celebrate.

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She’s wide around the middle, a little like our snowman, but Maria talks all the time.

She’s fun to be around, even though she insists on calling me “Melly-Belly.”

Every year when it’s time to bring out the ancient snowman, Maria jumps and cheers with real excitement.

I’m pretty sure she’s the only kid in our class who truly likes it.

“It’s time for Sydney the Snowman!” she gasps.

“Can I put his hat on?

Please?

Can I give him my red scarf?

Sydney will love my red scarf!”

Mrs. Hyatt and every teacher after her always let Maria take charge of the green paper cutout candy canes and the purple-striped stars cut from wrapping paper.

Maria kisses each decoration before attaching it with Velcro to the snowman.

She hugs Sydney each afternoon before she goes home.

And she cries when it’s time to put Sydney away each year.

Even though she has trouble figuring out complicated stuff, Maria understands people and how they feel.

“Why are you sad today, Melly-Belly?” she asked me one morning a couple of years ago.

How could she have known that my goldfish had died the day before?

I let her give me a big hug, and I felt better.

If Maria is our hugger, Gloria is our rocker.

She rocks for hours in the corner under one of the dumb smiling flowers.

The teachers are always trying to coax her out, but she wraps her arms around herself like she’s cold and keeps on rocking.

She’s autistic, I think.

She can walk perfectly well, and she talks when she has something to say.

It’s always worth listening to.

“Snowman makes me shiver,” she blurted out one day when the classroom was surprisingly quiet.

Then she curled up in her corner and said nothing else until it was time to go home.

She’s never added one decoration to our snowman, but she does uncurl and seem to relax when a teacher puts on a CD of holiday music.

Willy Williams—yes, that’s his real name—is eleven.

I’m not sure what his diagnosis is.

He yodels, like one of those Swiss people in a mountain-climbing commercial.

He makes other noises, too—whistles and grunts and shrieks.

He’s never, ever quiet and never completely still.

I sometimes wonder if he makes all those noises and movements in his sleep.

When Sydney the Snowman comes out of whatever box they keep him in during most of the year, the teacher has to keep Willy at a distance because he’ll knock the wobbly thing down.

Willy’s not trying to be mean—it’s just that his arms and legs are in constant motion.

He can’t help it.

Mrs. Hyatt was the first teacher to witness Sydney topple over.

“Why don’t you add this bright pink bow to our snowman?” she had squeaked to Willy that first year.

All arms and movement, Willy tried, but the stupid pink bow went in one direction and poor Sydney went in the other.

Three separate balls rolled across the room.

Willy shrieked and whistled.

I think I saw him smile as well.

Now, if Mrs. Hyatt had given Willy a baseball to glue to the snowman, it would have been placed more carefully.

Willy loves baseball.

Our first-grade teacher, Mr. Gross, liked to play guessing games.

Willy just burbled if the questions were about butterflies or boats, but watch out if the question was about baseball.

He’d screech out the right answer before the yelps and bellows took over.

“Who was the first baseball player to hit sixty home runs in one season?” Mr. Gross asked.

“Babe Ruth!” Then a screech.

“Who broke Babe Ruth’s record of seven hundred fourteen home runs?”

“Hank Aaron!” Whooping noises.

“And who is the all-time hit king?” Mr. Gross seemed to be astonished at Willy’s knowledge.

“Pete Rose!

Four-two-five-six.

Eeek!”

“And who holds the lifetime touchdown record?”

Silence.

Not even a squeak.

Willy doesn’t bother with football.

Or snowmen.

Sometimes when I look at Willy, though, I get the feeling that he really wishes he could be still and silent.

I watch him as he closes his eyes, frowns up his face, and concentrates.

For just a few minutes he’s quiet.

He takes a deep breath, like a swimmer coming up for air.

When he opens his eyes, the noises start all over.

And then he always looks sad.

Jill uses a walker because her left foot drags a little as she walks.

She’s thin and pale and very quiet.

When Sydney comes out for the season, Jill’s eyes are almost blank.

It’s like the light has been clicked off.

She cries a lot.

Mr. Gross used to put decorations in her hand and try to make it easy for her to join the activity, but it was like helping a store mannequin.

I heard an aide say she was in a car accident when she was a baby.

I think that’s awful—to start out okay, then lose the ability to do stuff.

Freddy, who’s almost twelve, is the oldest in our group.

He uses an electric wheelchair.

He loves that thing.

He tells me every chance he gets, “Freddy go zoom!

Freddy go zoom!”

He grins, pretends he’s putting on a helmet, then he pushes the controller to its max position and takes off across the room.

Of course, his speed control has two settings—slow and slower.

But to Freddy, he’s at the racetrack.

He zooms his electric chair around the raggedy old snowman, tossing Velcroed stars and bells at it, asking, “Snowman go zoom zoom?”

Well, after Willy sent it flying, and Carl tried to stab it with pencils, I guess it was a fair question!

Every year Freddy adds his own touches to the snowman— NASCAR and NASA decals like the ones on his chair.

If you ask Freddy what date it is, he can’t tell you.

But if you want to know who won the Daytona 500, Freddy will know.

And then there’s me.

I hate the stupid snowman.

But I toss tinsel at it like they ask me to.

It’s easier than trying to explain.

I have a large Plexiglas tray that fastens to the arms of my chair.

It serves as a food tray as well as a communication board.

When I was younger, Mom pasted dozens of words on it, but I was still limited to only a handful of common nouns, verbs, and adjectives, some names, and a bunch of smiley faces.

There are also a few necessary phrases, like, I need to go to the bathroom, please and I’m hungry, but most people—even little kids—need to say more than that in a day.

Duh!

I’ve got please and thank you, yes, no, and maybe close together on the right-hand side.

On the left are the names of people in my family, kids in my class, and teachers.

The name “Sydney” is not included.

There’s an alphabet strip at the top, so I can spell out words, and a row of numbers under that, so I can count or say how many or talk about time.

But for the majority of my life, I’ve had the communication tools of a little kid on my board.

It’s no wonder everybody thinks I’m retarded.

I hate that word, by the way.

Retarded.

I like all the kids in room H-5, and I understand their situations better than anybody, but there’s nobody else like me.

It’s like I live in a cage with no door and no key.

And I have no way to tell someone how to get me out.

Oh, wait!

I forgot about Mrs. V!

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CHAPTER VI.

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Mrs. Violet Valencia lives next door to us.

Violets are purple, and Valencia oranges are, well, orange!

Purple oranges are just plain unusual, and so is she.

She’s a big woman—about six feet tall, with the biggest hands I’ve ever seen.

They’re huge!

I bet she could put a full-size basketball in each of her palms and still have room left over.

If Mrs. V is, well, like a tree, then my mom is a twig next to her.

I was about two years old when I first started hanging out at Mrs. V’s house.

Mom and Dad hardly left me with anybody at first, but sometimes their work schedules overlapped, and they needed a third person to help out.

Mom said Mrs. V was the very first visitor when I first came home from the hospital, the first person to just pick me up like any other baby.

A lot of my parents’ friends had been scared to even touch me, but not Mrs. V!

Mrs. V wears huge, flowing dresses—must be miles of material in those things—all in crazy color combinations.

Bubble-gum pink, with fire-engine red, with peachy sherbet, with bright cinnamon.

And all shades of orange and purple, of course.

She told me she makes the dresses herself.

I guess she’d have to.

I have never seen anything like them in any store in the mall.

Or in a hospital, either.

Mrs. V and Mom used to work together as nurses at the hospital.

Mom told me the children there had been crazy about her.

She wore the same bright outfits in the preemie ward, the kids’ cancer ward, the children’s burn unit.

“Color brings life and hope to these children!” she’d announce boldly, daring anybody to disagree.

I guess nobody did.

I remember sitting on Mrs. V’s porch that very first time.

Mom and Dad looked concerned, but Mrs. V held me tightly and bounced me on her knees.

She must have a hidden microphone under those flowing clothes—she has one of those voices that can make anybody shut up, turn, and listen.

“Of course I’ll watch Melody,” she’d said with certainty.

“Well, Melody is, well, you know, really special,” Dad said hesitantly.

“All kids are special,” Mrs. V had replied with authority.

“But this one has hidden superpowers.

I’d love to help her find them.”

“We can’t possibly pay you what this is worth to us,” Dad began.

Mrs. V had shrugged and said with a smile, “I’ll appreciate whatever you can give me.”

My dad looked sheepish.

“Well, thanks.

And I’ll get that ramp finished this weekend.

I just need to make one more trip to the lumberyard.”

“Now, that will be a big help,” Mrs. V had said with a nod.

“Melody can be a handful,” Mom had warned.

Mrs. V lifted me into the air.

“I’ve got big hands.”

“We want her to reach her highest potential,” Dad added.

“Oh, gag me!” Mrs. V said, startling him.

“Don’t get bogged down in all those touchy-feely words and phrases you read in books on disabled kids.

Melody is a child who can learn and will learn if she sticks with me!”

Dad looked embarrassed.

But then he grinned.

“Bring her back in twenty years.”

“You’ll have her back home by suppertime!”

So most workdays I’d end up at Mrs. Valencia’s place for a couple of hours until Mom or Dad could get home.

When I got older, I went over to Mrs. V’s every afternoon after school.

I don’t know how much they paid her, but it couldn’t have been enough.

From the very beginning, Mrs. Valencia gave me no sympathy.

Instead of sitting me in the special little chair my parents had bought for me, she plopped me on my back in the middle of the floor on a large, soft quilt.

The first time she did that, I looked up at her like she was crazy.

I cried.

I screeched.

She ignored me, walked away, and flipped on her CD player.

Loud marching band music blared through the room.

I liked it.

Then she came back and put my favorite toy—a rubber monkey—a few inches from my head.

I wanted that monkey.

It squeaked when you touched it.

But it may as well have been a million miles away.

I was on my back, stuck like a turtle.

I screamed louder.

Mrs. V sat down on the quilt.

“Turn over, Melody,” she said quietly.

Sometimes she can make her voice really soft.

I was so shocked, I stopped yelling.

I couldn’t turn over.

Didn’t she know that?

Was she nuts?

She wiped my nose with a tissue.

“You can turn yourself over, Melody.

I know you understand every word I say to you, and I know you can do this.

Now roll!”

Actually, I’d never bothered to try very hard to roll anywhere.

I’d fallen off the sofa a couple of times, and it hurt, so I usually just waited for Mom or Dad to move me to a comfortable position.

“Look at how you’re lying.

You’re already on your side—halfway there.

Use all that screaming and hollering energy you’ve got to take you to another position.

Toss your right arm over and concentrate!”

So I did.

I strained.

I reached.

I tried so hard, I farted!

Mrs. V cracked up.

But slowly, slowly, I felt my body rolling to the right.

And then, unbelievably, plop!

I was on my stomach.

I was so proud of myself, I screeched.

“I told you so,” Mrs. V said, victory in her voice.

“Now go get that monkey!”

I knew better than to protest.

So I reached for it.

The monkey was now only two inches from my hand.

I tried to scoot.

My legs kept doing the opposite of what my head wanted them to do.

I wiggled.

I grabbed a fistful of the quilt and pulled.

The monkey got closer!

“You’re a smart little cookie,” Mrs. V told me.

I gave the quilt another tug, and finally, gradually, I had the monkey in my hand.

I clutched it, and it squeaked as if it were glad to see me.

I grinned and made it squeak again and again.

“After that workout, you must be hungry,” she said.

She fed me a vanilla milk shake first, then my vegetables and noodles.

Mrs. Valencia always serves dessert first.

And I always eat all my food—the healthy part, and the yummy part, too.

It’s our secret.

Mrs. V is the only person who lets me drink soda.

Coke.

Sprite.

Tahitian Treat.

I love the nose-tickling burp.

Mom and Dad mostly give me milk and juice.

Mello Yello is my favorite.

Mrs. V even started calling me that.

At Mrs. V’s house I learned to scoot and then to crawl.

I’d never win a baby-crawling contest, but by the time I was three, I had learned to get across a room.

She made me figure out how to flip myself over from front to back and back to front again.

She was tough on me.

She let me fall out of my wheelchair onto pillows so I could learn how best to catch myself.

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“Suppose somebody forgets to fasten that seat belt of yours,” she said in that voice that sounded like she was chewing gravel.

“You better know what to do, or you’ll bust your head wide open.”

I didn’t want a busted head, so we practiced.

She’d send me back home, tell Mom I had a good dinner and a good poop—I have no idea why parents think that’s so important—then wink at me.

I was like her secret mission.

Once I started school, however, I discovered I had a much bigger problem than just falling out of my chair.

I needed words.

How was I supposed to learn anything if I couldn’t talk?

How was I supposed to answer questions?

Or ask questions?

I knew a lot of words, but I couldn’t read a book.

I had a million thoughts in my head, but I couldn’t share them with anybody.

On top of that, people didn’t really expect the kids in H-5 to learn much anyway.

It was driving me crazy!

I couldn’t have been much more than six when Mrs. V figured out what I needed.

One afternoon after school, after a snack of ice cream with caramel sauce, she flipped through the cable channels and stopped at a documentary about some guy named Stephen Hawking.

Now I’m interested in almost anything that has a wheelchair in it.

Duh!

I even like the Jerry Lewis telethon!

Turns out Stephen Hawking has something called ALS, and he can’t walk or talk, and he’s probably the smartest man in the world, and everybody knows it!

That is so cool.

I bet he gets really frustrated sometimes.

After the show went off, I got real quiet.

“He’s like you, sort of, isn’t he?” Mrs. V asked.

I pointed to yes on my board, then pointed to no.

“I don’t follow you.”

She scratched her head.

I pointed to need on my board, then to read.

Need/read.

“I know you can read lots of words, Melody,” Mrs. V said.

I pointed again.

More.

I could feel tears coming.

More.

“Melody, if you had to choose, which would you rather be able to do—walk or talk?”

Talk.

I pointed to my board.

I hit the word again and again.

Talk.

I have so much to say.

So Mrs. V made it her new mission to give me language.

She ripped all the words off my communication board and started from scratch.

She made the new words smaller, so more could fit.

Every single space on my talking board got filled with names and pictures of people in my life, questions I might need to ask, and a big variety of nouns and verbs and adjectives, so I could actually compose something that looked like a sentence!

I could ask, Where is my book bag? or say, Happy Birthday, Mom, just by pointing with my thumb.

I have magic thumbs, by the way.

They work perfectly.

The rest of my body is sort of like a coat with the buttons done up in the wrong holes.

But my thumbs came out with no flaws, no glitches.

Just my thumbs.

Go figure.

Every time Mrs. V would add new words, I learned them quickly, used them in sentences, and was hungry for more.

I wanted to READ!

So she made flash cards.

Pink for nouns.

Blue for verbs.

Green for adjectives.

Piles and piles of words I learned to read.

Little words, like fish and dish and swish.

I like rhyming words—they’re easy to remember.

It’s like a “buy one, get the rest free” sale at the mall.

I learned big words, like caterpillar and mosquito, and words that follow crazy rules, like knock and gnome.

I learned all the days of the week, months of the year, all the planets, oceans, and continents.

Every single day I learned new words.

I sucked them in and gobbled them up like they were Mrs. V’s cherry cake.

And then she would stretch out the cards on the floor, position me on a big pillow so I could reach them, and I’d push the cards into sentences with my fists.

It was like stringing the beads of a necklace together to make something really cool.

I liked to make her laugh, so I’d put the words into wacky order sometimes.

The blue fish will run away.

He does not want to be dinner.

She also taught me words for all the music I heard at home.

I learned to tell the difference between Beethoven and Bach, between a sonata and a concerto.

She’d pick a selection on a CD, then ask me the composer.

Mozart.

I’d point to the correct card from the choices she’d set in front of me.

Then I’d point to the color blue on my board.

“Huh?” she asked.

When she played a selection from Bach, I’d point to the correct composer, then once again touch the color blue on my board.

I also touched purple.

She looked confused.

I searched around for the right words to explain what I meant.

I wanted her to understand that music was colorful when I heard it.

I finally realized that even Mrs. V couldn’t figure out everything in my head.

We kept going.

Sometimes she’d play hip-hop music, sometimes oldies.

Music, and the colors it produced, flowed around her as easily as her clothing.

Mrs. V took me outside in all kinds of weather.

One day she actually let me sit outside in the rain.

It was steaming hot, and I was sticky and irritable.

It must have been about ninety degrees outside.

We were sitting on her porch, watching the storm clouds gather.

She told me the names of all the clouds and made up stories about them.

I knew that later she’d have the names of every kind of cloud on word cards for me.

“Big old Nimbus up there—he’s black and powerful and can blow all the other clouds out of the sky.

He wants to marry Miss Cumulus Cloud, but she’s too soft and pretty to be bothered with such a scary guy.

So he gets mad and makes storms,” she told me.

Finally, old Nimbus got his way, and the rain came down around me and Mrs. V.

It rained so hard, I couldn’t see past the porch.

The wind blew, and the wet coolness of the rain washed over us.

It felt so good.

A small leak on Mrs. V’s porch let a few drops of rain fall on my head.

I laughed out loud.

Mrs. V gave me a funny look, then hopped up.

“You want to feel it all?” she asked.

I nodded my head.

Yes, yes, yes.

She rolled me down the ramp Dad had built, both of us getting wetter every second.

She stopped when we got to the grass, and we let the rain drench us.

My hair, my clothes, my eyes and arms and hands.

Wet.

It was awesome.

The rain was warm, almost like bathwater.

I laughed and laughed.

Eventually, Mrs. V rolled me back up the ramp and into the house, where she dried me off, changed my clothes, and gave me a cup of chocolate milk.

She dried off my chair, and by the time Dad came to pick me up, the rain had stopped and everything was dry once more.

I dreamed of chocolate clouds all night.