Dwarf: A Memoir (32 page)

I was really on television.

“Let’s go, let’s go, let’s go!” I called out again. And down the staircase they came,
my dad handing coffee mugs to sleepy family members as they entered the kitchen. We
all piled into the theater room, the one room in our house that didn’t have a window.
I think Dad wanted to watch it play across the big screen like a real movie.

Side by side we sat, motionless and speechless as the five-minute segment aired on
national television. In that small time frame,
Good Morning America
captured my life, my struggle, and in the end, my fairy tale. At the end of the segment,
viewers were invited to discuss the piece on the ABC online bulletin board, and we
all clamored off the couch and over to the computer to see what people would say.

Minute by minute, people offered their opinions on my story. I was surprised, but
still intrigued. The majority were very supportive and one even called me and Eric
“America’s Sweethearts.” Several people were amazed at the courage it took to drop
everything and relentlessly focus on a goal.

One woman wrote that she could relate to what I’d been through, having been teased
terribly through her childhood. She said she was horrified that Ms. Hart had gotten
away with treating me the way she did and she congratulated me on the way I chose
to live my life.

If only it remained strictly positive.

By nine o’clock that morning, the controversy began. Perfect strangers spoke out against
my decision to have surgery and criticized me at will. I never realized how strongly
the world would react to my desire for independence.

By ten, I received an update from a producer that my story was one of the most read
on the Web site.

But it was only just beginning. The feedback from sharing my story followed me all
the way back to North Carolina. And it went far beyond just the ABC site. I was inundated
with messages on my Myspace account and my personal e-mail. People thought I was shallow
and vain for undergoing my surgeries and said that I shouldn’t mess with what life
dealt me.

I made the mistake of programming my cell phone to notify me each time I received
a new e-mail and for the weeks that followed my press, my phone alerts were relentless.
“You have a message. You have a message.
You have a message
!” my phone sounded constantly.

After reading the final e-mail in my in-box one day, I shut my laptop and made my
way into the living room, where I plopped down on the couch next to Eric. He flipped
through the channels
on our TV and I threw my legs over his on the coffee table. We were watching
our
TV, I thought to myself with a smile. And in
our
living room! I picked up a pile of mail off the arm of the couch, dropped it on my
lap, and began to thumb through it. Some envelopes contained our bills, and I was
eager to hold them in my hand. It felt as if they were some kind of validation that
we officially shared a life together. Others pieces of mail were advertisements, the
same kinds of ads that my mom would toss aside and proclaim to be junk. I loved junk.

And then, slipped into the middle of the pile, was a single letter that I was not
expecting. There was no return address.

I was baffled. I never said anything about a “cure,” for dwarfism, nor did I suggest
that it was wrong. And suddenly, I was a sellout, a disgrace to the little people
community and its culture?

I wanted to flick a light switch without using a spatula.

I wanted to reach the faucet without first reaching for a stool. I wanted to see over
the counter, take out the trash, and make my own coffee without something or someone
assisting me. I wanted more for myself, more out of life, so I changed my body to
that
end. I’d never given any thought to what the “dwarf community” might think about that.
But here I was being judged, as if I’d gone against some sacred order of Dwarfdom.

I stared at the letter for a while, mulling over the words and debating if I should
try, somehow, to respond.

“Babe?” Eric said. “Babe, what is it?” He eyed the letter in my hand.

I handed it to him with a smirk and watched his eyes scan across the page. He tightened
his lips together and instantly I saw it bothered him more than it bothered me.

“It’s like my Papa always said,” I told Eric before he had a chance to speak. “Opinions
are like assholes. Everybody’s got one.”

I wondered what would have happened if I had subscribed to this belief in high school.
Would Ms. Hart have affected me in the same way? Would I still have had the surgery?

The answer was a resounding yes. The world would never adapt to me, so I adapted to
it. Having surgery was about living the life I’d always dreamed of. And here I was,
actually living it! I smiled at Eric, thinking,
knowing
, that I never would have met him if it weren’t for the transformation I’d undergone.

“This really doesn’t bother you?” Eric asked. His expression had softened, and I could
tell he felt proud that I wouldn’t let some stranger’s ignorance get me down.

“Nope— I have much more important things to do than worry about that,” I told him
as I eagerly snatched the letter out of his hand. I walked from the couch to the garbage
can in the kitchen, dropped the letter inside, and turned back to Eric with a smile.

“Like taking out the trash.”

Epilogue

W
HETHER YOU LIKE
it or not, you are and always will be a dwarf. The sooner you accept it the better.
What if your child is also a dwarf? What are you going to do, make him or her go through
the procedure as well? God help them. You will be an appalling parent.

Of all the unsolicited advice and opinions I got after my
Good Morning America
segment, this one stuck with me the most. It underscored the fact that the decisions
I may make for my child one day could be far more difficult than those the average
parent faces. If I have a baby who is born with diastrophic dysplasia, would I encourage
him or her to go through with the surgeries that I did?

I’d have to think about the answer to that question sooner than I expected.

As of the writing of my manuscript, I am seven months pregnant! Eric and I have always
wanted to have children but the timing wasn’t exactly planned.

“You said from the beginning you wanted to live life,” Eric said when we got the surprising
news. “Well, babe, that’s exactly what we’re doing! We’re starting our family.”

The news of my pregnancy also turned out to be an
unexpected lesson in genetics. In my early doctor’s appointments to determine whether
our baby might have diastrophic dysplasia, Eric and I were both tested to see if we
are carriers of the single gene that causes my unique condition. While I am a carrier
of the gene, we found out that Eric is not, so there is only a very slim chance that
our son (we’re having a boy!) will be born with diastrophic dysplasia. Of course,
there’s always the potential that he could be born with a different form of dwarfism.
The truth is, I am more likely to have a baby with dwarfism than an average-size mother.

I don’t have any expectations for parenthood. As of right now, I’m just having fun
picking out names, shopping for baby clothes, and seeking out the perfect crib. I’m
excited and looking forward to the little things, like watching Saturday morning cartoons
with our boy. I can’t wait to watch Eric read to him before bed, and for family trips
to military appreciation festivals and dressing up our little guy for Halloween.

I’m also scared out of my mind. For starters, I don’t know how I’ll give birth. This
is a brand-new ballgame for me that doesn’t involve an osteotomy or anything to do
with bone breaking or pins— I’m totally out of my element. I have yet to learn what
my options are for epidurals or anesthesia when I give birth, because I have a curvature
to my spine and I’m a complicated intubation. So far, doctors have told me that a
C-section will be the best and safest way to deliver. I’ve been working on accepting
this reality, but I’m so scared to have a doctor take a scalpel across my belly. I
know this is a very common procedure, but to me it’s new and terrifying to the point
that I find myself actually wishing for the days of pins and wires being drilled and
strung through my bones. While incredibly painful, those ordeals felt so much simpler
than giving birth— and parenthood.

On the plus side, I haven’t experienced any morning sickness, aches, or pains. Maybe
a higher power figured I’ve been through enough and I’m finally getting a break.

I do know that at some point I’ll have to be put on bed rest because of my size. There
has been so much involved with finding the right ob-gyn for me as I’m a high-risk
mom and I could have a high-risk baby, too. The whole process has made me feel like
I’m fifteen again, trying to find the right doctor who’s willing to work with me and
perhaps to think outside the box. Except this time, it’s not all about me. Thankfully,
Dr. Mortimer has joined me in the hunt for the right team of specialists and I’ve
returned to Massachusetts to deliver my baby back home.

Returning to my parents’ house up north presented another nerve-wracking situation:
having my father see me pregnant. Even the word “pregnant” feels awkward to me (I
only refer to myself as “preggos”). On my first day back home, my heart felt like
it as going to beat out of my chest as I sat at the kitchen table, waiting for my
dad to make his way up the cellar stairs. When he came into the kitchen, I was ready
to jump out of my seat.

“Hey, Dad!” I practically shouted.

“Hey, Tiff.”

“Don’t I look good?” I blurted out, eager to avoid any awkward silences.

“Yah, yah, you look good,” he replied, leaning in for his usual light embrace and
pat on the hand. My dad has never been one to give out big, warm bear hugs. Then we
were stuck in the silence I was trying to avoid . . . until Mom came into the room.

“
Well?
What do you think?” she asked, nudging him on the shoulder. “This is your first grandchild!”

Dad nodded, smiling slightly, but remained silent. I watched fear and worry wash over
his face as it did so many times when I
was stuck in our blue recliner. I’d need to prove to him all over again that I could
be not only independent, but also ready to build a family on my own.

As for Eric, he couldn’t be happier. The first thing he bought for the baby was a
rattle that says:
The Few, the Proud, the Cute. USMC Baby!
Seeing his gigantic smile as he shakes the rattle near my belly, I think that there’s
no way I’m not off to a wonderful start.

Of course, I’ve also been thinking about what we’ll do if our baby has any form of
dwarfism. To me, it wouldn’t be a terrible thing, but I would certainly prefer that
he doesn’t so he won’t have to deal with the pain and worry that I did. I’ve also
had to think about whether I’d want our son to undergo the bone-lengthening surgery
that I had as a child.

My answer is an unequivocal yes.

If our son has arms so short that he is unable to reach his own ear, I want to do
what my mother did for me and have him go through the procedure for those critical
couple of inches. Beyond that, additional surgery would be up to him. If he dreams
of washing his hands without a stool, or struggles to boil a simple pot of water,
I will support him in doing whatever it takes to live an independent life, even if
he faces opposition from others along the way.

Eric doesn’t feel as strongly as I do about that point. It’s something that we’ll
continue to discuss and debate over until we are actually holding our son.

But we do agree on this: whether our little boy has challenges like I did, or grows
to be six feet tall, I will teach him to be a fighter, to be brave, and to take no
prisoners in life. Most of all, I’ll make sure my child knows that he should never
let anything stand in the way of becoming the person he wants to be.