Dwarf: A Memoir (6 page)

My half brother, Nicolas (from my dad’s first marriage), didn’t need a bodyguard.
He could reach everything he wanted, including Dad’s system. He didn’t need to slide
down the stairs when he visited on weekends. He could run down them and back up again
in a flash. Nicolas had a full head of curly brown hair, small freckles across the
bridge of his nose, and a gap between his two front teeth. He was an athletic kid,
two years older than me, and I watched him accomplish everyday tasks with ease. It
never dawned on me that things were difficult for me and easy for Nick because I was
handicapped and he was not.

Nick never treated me like I was different, either. Together
we’d park ourselves in front of the TV and watch WWF and then reenact the tag team
matches with our pillows. The typical younger sister, I wanted to do everything he
did, and I begged him to help me make forts out of sheets and the dining room chairs.
I chalked up our differences to his age and the fact that he was a boy. One day, I
figured, I would be that age, too, and prove girls could do everything just like the
boys.

On many a weekday afternoon, I had doctors’ appointments at Children’s Hospital Boston.
And doctors’ appointments often meant preparation for more surgeries. They were as
normal as brushing my teeth. I had no idea that other girls my age didn’t visit the
doctor as regularly as I did. Nor did I realize that my doctors’ appointments were
nothing like my friends’ appointments when they got a cold or strep throat.

In school, there was one other girl who talked about having surgery. She, like the
rest of the kids in my class, sat in a glossy, colored chair. Mine was just thick,
plain wood, and it was modified, as was my desk, to sit very close to the ground.
I peered up at her, feeling like I was practically sitting on the classroom floor.
I was so envious of her desk and that shiny red chair.

Turned out, she had something else I wanted, too— her tonsils removed. It was nothing,
she explained to me, and the best part was that afterward, she could have all the
ice cream and Popsicles that her stomach could handle. She started the Tonsil Club
shortly after, but I couldn’t belong because I hadn’t had mine removed. I longed to
have that operation. It was not unlike when the newest Barbie came out. If other girls
had it, I wanted it, too. But my tonsils stayed in my throat, and instead of ice cream,
I had crushed ice with ginger ale after every operation, working my way up to Campbell’s
chicken noodle soup. Even though I was left out of the Tonsil Club, I was very much
included with the “normal” kids in elementary school.

“Why are you small?” I’d get asked once in a while.

“I don’t know. Why are you tall?” I’d reply with a shrug of my shoulders. And that
was that. I was smaller and they were taller. It was what it was. I remember other
kids getting teased in school for various reasons, though I actually never suffered
the same fate. But my classmates did notice something unusual about me: I didn’t look
like the rest of my family.

“Are you adopted?” a girl named Mandy asked me innocently one day in school.

“I don’t know,” I began. “What does that mean?”

“It means that your mom and dad aren’t your real mom and dad,” she explained. “I think
you’re adopted. You have a different mommy and daddy somewhere, because you don’t
look like the ones you live with. They’re so much taller than you,” Mandy continued.

My stomach felt like it was twisting into knots.
Not my real mom and dad? Will I have to move in with new parents somewhere else?
Images of being lost and alone, like Bambi in the woods, bombarded my imagination.
I couldn’t shake my panicked feeling all morning, so over lunch I asked Katie if she
also thought I was adopted.

“I don’t know,” she replied simply.

“Do I look like my mom and dad?” I pressed on. “What about Nick— do I look like him?”

Katie shrugged. “Maybe Nick knows if you’re adopted. You should ask him.”

Her answer gave me enough solace to get through the rest of my day. If I were truly
adopted, I figured, surely he would have told me. Every weekend when Dad would pick
Nick up, we’d play and laugh, and not a single word was whispered about adoption.

“If you were adopted, there would be papers. A certificate,” Nick said after I told
him what had happened at school. He
barely looked away from his Nintendo game flashing on the TV. “We can look around.
If we find a certificate, then you’re adopted,” he added, pausing the game.

While Mom prepared dinner and Dad let Bruiser out, Nick and I made our way to the
spare bedroom down the hall that Mom used for her sewing. She always kept the door
shut, and the handle was too high above my head to reach, which created an air of
mystery about what was on the other side. But Nick was able to open it for us. Looking
past the piles of fabric and sewing supplies, we focused on a tall shelving unit loaded
with odds and ends that didn’t seem to belong anywhere else in the house. I worried
that maybe I didn’t belong, either.

“I’ll start here,” Nick said, pulling a gold and brown tin box down from a high shelf.
He popped open the lid but found nothing but spools of thread, buttons, and scissors.

I removed each book off the bottom two shelves and sat on the floor.

“Be sure to look at every page,” he ordered. “A certificate could be stuck between
the pages.” He peered inside straw baskets and took a few more off the shelf and set
them aside. Then he grabbed a folder balanced on top of some clothing patterns, sending
the whole pile toppling to the floor. Everything scattered across the rug, including
a single piece of paper with a fancy green design adorning the border. Nick reached
for it and my heart pounded in my chest. It was covered in bold, typed letters; a
round, gold seal; and official-looking stamps.

“What is it?” I asked anxiously. “What do you have?”

He held it close and just looked at me. “A certificate.”

“Read it to me,” I demanded. “Please!”

“No,” he said. “I don’t want to.”

My eyes brimmed with tears as I grabbed wildly at the paper,
but Nick put his hand on my forehead and held the sheet behind him, keeping it far
out of my grasp. After fighting him for a moment, I knew what I had to do. I left
the spare bedroom and walked down the hallway toward the kitchen. It felt like time
had stopped as I approached my mother.

“Mommy?” I said in the smallest voice, standing by the refrigerator.

“Yes, honey?” she replied while stirring a pot on the stove.

“Are you happy about me?”

She dropped her wooden spoon, which landed with a
clank
on the side of the metal pot. Then she spun around to face me and dropped to her
knees.

“Oh my God,” she said, picking me up and holding me in her arms. “You are the
best
thing to ever happen to me. Of course I’m happy about you!” she said, squeezing me
tighter. I felt her chest heave and heard her sniffle. “Of
course
I’m happy about you,” she repeated. Then she let me go and looked into my eyes. I
watched as tears ran down her cheeks. It made me want to cry, too. “I love you more
than all the stars in the sky. What would ever make you ask such a question?”

I didn’t know what to say.

“Why would you ask me this?” she asked again.

Still, I remained silent. I shrugged and squeezed my small arms as tight as they could
get around her. I wasn’t expecting her reaction and all I wanted to do was hug her,
feeling comforted by the warmth of her body and the sweet smell of her perfume. I
stopped worrying about being adopted and took a deep breath, feeling like maybe it
was all just a big mistake.

“You may be little, you may be short, but I love you, because you’re mine,” she said,
continuing to hold me. “You’re
mine
. Always remember that.” And I believed her.

That night, I slept soundly under the tent Nick and I made together, and things went
back to normal over the weekend.

On Monday, I didn’t have the chance to tell Mandy I wasn’t adopted after all because
Mom kept me home from school. I missed a lot of school due to my doctors’ appointments
and surgeries. But on the days that I didn’t get to see my friends, Ruby would appear.

“Play Cyndi,” she said, motioning to the play button on the Pioneer system. I hummed
“Girls Just Wanna Have Fun” in anticipation as the tiny wheels in the tape began to
turn. I was wearing my mom’s jewelry again, feeling confident that I looked a lot
like her. The domed heart ring turned circles around my tiny finger and her long,
beaded necklaces swayed from side to side as I shimmied atop the lobster pot.

Before Cyndi could begin singing, Mom was standing over me, holding the very certificate
Nick had found. She turned the music off with a flick of her long, salmon pink fingernail
and tossed her feathered, blond Farrah Fawcett–style hair.

“Why was this in your room?” Mom asked. She looked very confused. “This belongs to
my sewing machine, Tiffie. If I lose it and something happens to my machine I can’t
get it replaced.”

I felt a rush of relief and a twinge of embarrassment.

“I don’t want you going through my sewing room,” she continued. “There are pins and
needles and scissors in there. You could get hurt. Promise me you will stay out of
that room.”

“I promise!” I shouted happily. “I love you.”

“I love you, too! Now, it’s really time to go,” she said, motioning for me to hand
over her jewelry. “We’re going to be late for your doctor’s appointment, sweetheart.”
I wiggled out of the necklaces, my hair falling into my eyes as I pulled them over
my head.

On our way to the hospital that afternoon, Mom and I bopped
along to my Cyndi cassette. The volume was turned up obnoxiously high and I made sure
to sing along extra loud. Our time together in the car made the exhausting trip to
Boston fun. It was a mini party in her car.

Compared to our very small bedroom town of Douglas, Boston seemed like the land of
endless possibilities. It was intriguing. Even if all I knew of the city existed between
the walls of the hospital’s orthopedic ward, to me it was like the Land of Oz. It
took forever to get there, but the huge silver skyscrapers and the cars, trucks, and
ambulances that whizzed past us always enchanted me. Clusters of people maneuvered
up and down the skinny streets, drivers blew their horns constantly, and my mom cursed
at the ones that cut in front of our car.

In my imagination, the people who sat up above our car in glass boxes— Mom called
them tollbooth operators— protected the city.

“Jesus Christ,” she hissed as she handed over money through her window.

The tollbooth operator was expressionless and stood perfectly still with his hand
outstretched.

“Soon we won’t have a pot to piss in if you keep raising the prices.”

After the hassle of the tollbooths, parking was the biggest challenge. We’d circle
around and around trying to find a spot. Eventually it became a game. Who could spot
an open space first? The way I had it figured out, if the operator at the gate was
nice, the parking gods would be, too. If he was grumpy, we’d spend at least forty-five
minutes hunting for a space. On this trip to the hospital, because I was already happy
from dancing to Cyndi, I made sure to wave and smile at the tollbooth operator. And,
poof!
We got our best parking spot to date, right in front.

Mom and I made our way through the wide corridors of the massive hospital, much of
which was worn, faded, discolored, and drab. I never liked the furniture inside Boston’s
Children’s Hospital. Furniture always made a big impression on me since chairs and
tables were usually right at eye level. The hospital wood seemed too pale, as if it
were sick. But I wasn’t sick. I was there to look at my bones on X-rays, to make sure
they were straight and strong. I was also there to pick out a stuffed animal from
the gift shop. Other kids didn’t have animals to accompany them down the halls or
in their beds. Instead, they had tubes and wires with them, and mounds of blankets
covering up their bodies. Some kids couldn’t sit up. They’d lie there, tired, sad,
and scared, while their moms or dads hovered over them, wiping away their tears. I
wasn’t allowed to cower like they did.

“Everyone has problems; everyone has pain,” Mom would say to me during any moments
of weakness. “Some you see and some you don’t see. But it’s there and crying doesn’t
make it go away.”

That made me wonder what my mom suffered from. What was her pain? I wanted to handle
my pain the same way she did— with ease, as though it almost didn’t exist at all.

As we walked down the long corridor toward Dr. Shapiro’s office, the lights above
our heads cast a yellowish glow. Strange artwork dotted the walls throughout the hallways
and waiting rooms. One painting in my doctor’s office always scared me. It was mostly
an abstract, blotchy mess, but in the middle, there was a boy swimming in the ocean.
He was raising his arm up out of the waves, but it was a frighteningly odd shape—
like it had been badly broken in the surf. No one else seemed to be scared by it.
But seeing it meant I was closer to yet another surgery, so it made my heart thump
harder. Surgery meant that anesthesia, tubes, wires, big beeping machines, needles,
and rubbing alcohol were
on their way. I’d squeeze my animal tighter when I saw that painting, burying my face
in its soft little head.

From keeping my legs straight to correcting my clubbed feet to closing a small cleft
in the soft palate of my mouth, I’d had literally dozens of surgeries since I was
ten months old, and I’d battled arthritis for as long as I could remember. That’s
the nature of the beast that is diastrophic dysplasia. But from what I gathered from
the adult conversations, this next surgery would be a more complicated series of procedures
aimed to make me more independent. And it would be nothing like what I’d been through
before.