Dwarf: A Memoir (3 page)

When I was two years old, I underwent one of the first of many surgeries to correct
my ill-formed bones. My rare form of dwarfism, diastrophic dysplasia, caused my bones
and joints to develop irregularly, so surgical procedures were a part of my life from
the start. This procedure was to straighten my clubbed feet, making them more functional
and enabling me to walk like other toddlers. I’d had casts on my feet before, beginning
when I was
three days old. I don’t remember the surgery or the recovery, or any pain involved,
really. But I do remember those casts.

In this recollection, I’m in my crib, holding my legs as high as I can above my
Sesame Street
blanket and staring at the thick white shells engulfing both of my feet. I’m amazed
that no matter how hard I hit them, they won’t crack like an egg. They are heavy,
cakelike, and smell like plaster and dust.

My little room is decorated with plastic jungle animal decals stuck to each of the
walls. There are lions, rhinos, giraffes, and birds, all dancing around me. But I
am the one stuck in a cage. Across my room, the door is partially closed, which is
upsetting to me because I can’t see out into the hallway. I have to see. I have to
be out
there
. Raising my legs as high as they will go, I smash them down again against the bars
of my pen. Nothing happens. I’m still stuck.

I can also recall sitting down for meals in my Winnie the Pooh high chair, probably
because of the song that my mom sang to me each time I was in there. It was a silly
little tune, but it was a mealtime staple, just like putting on my bib or clicking
into place the little plastic tray on my chair.

You may be little, you may be short, but I love you, because you’re mine,
Mom always sang.

I was five pounds, four ounces when I made my easy entrance into the world on November
12, 1980. “You were two poops and a push,” Mom says of my birth. I’ve never asked
her to elaborate because it sounds really gross, but I’m assuming she means she had
an easy delivery and wasn’t in labor for that long. Time and time again, my mother
has told me that my arrival was the happiest moment of her life.
I
was the happiest moment of her life. Even as a small child, I understood that to
be true.

As my mom held me and squeezed my tiny wrinkly hands, my dad left the room and called
everyone he knew.

“You curled your legs up and settled into a little ball on my chest,” Mom tells me.
It was such a joyful time that no one noticed that anything was wrong. Yet.

Once the doctors recorded my stats and gave me a more thorough examination, they noticed
my arms were shorter than normal. Then they realized my legs were unusually short
as well. That’s when you could say the two poops hit the fan.

As my mom watched my dad perch proudly on the windowsill after making his rounds on
the phone, the on-call pediatrician came into the room.

“Your daughter has third-degree dwarfism,” she said.

Then, as quickly as the doctor had entered the room, she turned and exited, leaving
panic in her wake.

“If your father could have fallen out of that window he would have, but lucky for
him, it was closed,” Mom says every time she reflects on that day.

My parents were silent, contemplating many questions that neither one of them could
answer. What was dwarfism? How severe was third-degree dwarfism? Was that like third-degree
burns? Would the condition get worse?

No one knew.

No further explanation was provided.

The next day, the doctor’s confusing diagnosis still loomed over my dad, intensifying
his new fears about having a disabled child. He relayed the news to his parents. In
a conversation filled with fear, ignorance, and panic, a suggestion was made behind
closed doors.

Give the baby up for adoption or get a divorce.

Turns out, there is actually no such thing as “third-degree dwarfism.” That was just
a generic way to refer to the fact that I was born with a disorder that caused short
stature and unusual
bone structure. The diagnosis of diastrophic dysplasia would come much later.

But the damage was done.

And with the two options presented to her from my dad’s conversation, Mom made
her
decision without a moment’s hesitation. Divorce.

Over the course of about six months, she moved us out of my dad’s apartment in Webster,
Massachusetts, and into a place of our own. Together, just the two of us, Mom and
I settled into the tiny, two-bedroom apartment she’d rented in a Cape-style house.
She describes it as bright, sunny, and painted yellow— despite the sadness of the
divorce, it was a happy little home. Mom made sure that it was. At the time, she was
working for a big computer company in the same town. She went to the office from seven
a.m. to three p.m. while I went to KinderCare. At dinnertime each night, she sang
me her little tune.

You may be little, you may be short, but I love you, because you’re mine!

Such was our life early on. My mother didn’t think about being a single parent to
a child with dwarfism; it was just Mom and Tiffie. But before long, the phone calls
began.

Dad called her over and over, describing the nightmares of a life without us that
haunted him. He said that he saw my eyes every time he went to sleep. Life without
his little girl was too much to bear. This story always reminds me of Scrooge and
the three ghosts— I picture my dad alone in bed, being visited by the ghosts of his
Past, Present, and Future.

First, I imagine him traveling back in time to the night he met my mom at the Driftwood,
a popular club in Northborough, Massachusetts, in the ’70s. Mom went to the Driftwood
with her friend Debbie every Friday night when she got off work. In the
beginning, she didn’t even like my dad. She thought he was rude and annoying. But
as the Friday nights went by, she warmed up to his odd sense of humor and his classic
’70s mustache. Before long, they were riding his Harley up Mount Wachusett together
and planning their future.

Next, I picture my father dropped back into the sadness of the present situation shortly
after my birth. He’s all alone and left to think about life without the family he
helped create. Finally, I see the third ghost hovering over him with images of the
future cutting through the darkness of his lonely apartment.

Dad needed us back in his life, he told Mom, and he asked her for the most difficult
gift anyone can give: forgiveness. For that, I’ve always thought of him as the bravest
man I know. In turn, Mom found her own hidden virtue, and she forgave him. But she
would never forget.

I may have been little. I may have been short. But I was loved, because I was theirs.

When the April showers of 1981 had passed, May’s flowers sprang up all around a little
three-bedroom ranch in Douglas, Massachusetts. It was short on curb appeal, but the
property held just enough beauty to pique my mom’s interest. The house had a happy,
bright feel, and it was painted yellow like the color she loved so much in our old
apartment. It had no porch— just three drab concrete steps to the front door— and
a steep driveway, but to Mom it had all the makings of our first real home.

We moved in right away, even though there was no refrigerator, washing machine, stove,
or dryer in the new house. Mom had only a tiny cooler for my milk and juice and a
countertop toaster oven where she prepared meals. My parents’ relationship gradually
fell back into place, as did the necessities. Dad was still living in Webster at the
time, but he saved every quarter, dime, nickel,
and penny in his Folgers coffee cans until he had enough to buy my mom her first refrigerator.
The washer, dryer, and stove came later, along with the jungle animal decals that
decorated the walls of my room. Everything my dad did back in those days was penance
for what had happened shortly after I was born.

As the weeks went by, Dad remained devoted to taking care of me and to making our
lives easier. And that did more than just ease the incredible guilt he lived with
(and still does today)— it allowed Mom to pursue her dream of becoming a nurse. Shortly
after reconciling with my dad, Mom enrolled in nursing school at the hospital where
it all began.

I had been far too young to remember my parents’ nearly failed marriage, and while
I was aware that I never saw one of my grandmothers, my parents never made a big deal
out of it. But when I was five, something shifted, and gifts began arriving at my
house.

At first I didn’t realize they were for me. I thought they kept coming to the wrong
house, since they always got sent back. But, oh, was I jealous of the kid who got
to keep them!

Every week there was something new. I’d wake up in the morning and shuffle out of
my bedroom, peeking around the corner to see what new doll, stuffed animal, or toy
had arrived. I walked with an unusual gait as a child, just as I had as a toddler,
and was a lot slower than other kids my age. I noticed this, but my parents never
said anything about it to me, so I didn’t regard it as a problem.

Just as quickly as the gifts arrived, my mom would insist that my dad take them away.
I always wondered where he was going with them. Was there a secret store? Was he bringing
the toys to
someone else’s house? I wanted to go, too. I always hoped I’d be allowed to get in
the car with my dad and see the home of this very lucky little girl.

Mom tried to shield me from the presents. But I often saw them before they were sent
away. And even though I didn’t actually get to play with the stuffed animals and toys,
I loved them just the same.

One day, I noticed that two Cabbage Patch dolls had arrived in the dining room. They
were twin boys, and the sight of them in their yellow overalls with their curly, yarn-loop
hair was almost too much for me to bear. As I pined over the dolls, taking in their
sweet features from a safe distance, my parents were locked in an argument in the
kitchen. Dad was pleading with Mom to let me keep the gifts.

“She’s trying to show she’s sorry! She’s admitting she was wrong,” Dad said. “I don’t
understand. Why won’t you won’t let Tiffie have the gifts?”

“I cannot be bought,” my mother responded in a growl. It scared me to hear her use
that voice. It reminded me of a monster. “Your
daughter
cannot be bought!”

Mom demanded that Dad send back this latest round of gifts, just as she always did.
But this time, I couldn’t allow him to do it. I loved them too much. The Cabbage Patch
twins were different from the other presents— they were wearing overalls, just like
I did, and they had bibs with tiny pockets. I pictured myself taking care of the twins
and, when they were good, buying them tiny trinkets from the toy store, like my dad
did for me, and tucking the treasures inside those small pockets for safekeeping.
I simply
had
to have those dolls.

So I dashed out from the doorway and headed straight toward the twins, screaming with
happiness.

“They’re for
me
!” I cried out. “Please don’t take them! Please!”

No one said anything.

Wildly, I looked from one parent to the other. “Who are they from?” I asked.

My mom looked like she’d been slapped in the face.

“Do you understand why now, Gerry?”

My dad nodded. Finally, he answered me. “They’re from me, pumpkin pie,” he lied.

These were the last gifts ever to arrive. And the only ones I was allowed to keep
from my grandmother Pauline.

Move Over, MacGyver

Striking a pose at my aunt Jean’s pool, age six.

I
SPENT A SIGNIFICANT PART
of my childhood molding myself into the epitome of self-sufficiency: I turned into
a mini MacGyver. At age five, I trained my eye to spot random household items that
could serve beyond their original, singular functions to help me live my life. I would
have made MacGyver proud, too, since the tools I used were no more complicated than
a pair of salad tongs.