A month later, I was finally well enough to get out of the NICU. Most of our family and friends avoided us, because nobody knew the best way to deal with a situation like ours. The ones who did come around were awkwardly delighted to meet me. All this was causing my mother unbelievable stress and isolation, which was breaking her heart. But never for an instant did my parents falter in their love for me.
My parents worried about how I would be accepted, and I still had many very critical health issues they needed to deal with. My breathing often sounded like a wheezing squeak of an underoiled see-saw. Sometimes, these episodes were so critical, I had to be hospitalized. This happened six or seven times my first year of life. When I was nine months old, I almost died. I had just been released from the hospital after another breathing episode, and had been given penicillin to take at home. To this day, Mom is still suspicious that it was a bad batch, recalling its horrible smell. Whatever the reason, the penicillin or not, within days of getting home I became so dangerously dehydrated that I had to be rushed back to the hospital, where I spent a solid month in guarded condition. Meanwhile, my parents were still dealing with a tangle of diagnoses and treatments.
My mother followed the doctor’s direction diligently and sought out every bit of wisdom she could find. My father, too, was unbelievably accepting of my condition. Many times, according to psychologists who understand the stress that a less than “perfect” baby places on a marriage, it is the man who really struggles with the idea of a long-term disability. Before I was born, they had decided to name me William Junior, after my father. Mom offered to let Dad choose another name, particularly the name that would eventually be given to my youngest brother, Joseph Scott, if he didn’t want me to be his namesake. My father would have none of it. “He is William Junior,” he announced with sincere pride.
My father was a graduate of the Nassau County Police Academy and a police officer on Long Island. He was perfect for the job—tall, athletic, a people person, and a hard worker. My mother was a loving stay-at-home mom. She worked as a bank teller before I was born, but once I arrived, she always intended to stay home with me. She just didn’t realize her new role was going to require navigating this much stress.
When I was still an infant, my mother actually had a nervous breakdown. Obviously, I was too young to remember it, but she was hospitalized for a full week and a half and was put on tranquilizers. It must have been terrifying for her, so young, scared, naïve, and in desperate need of answers, which nobody had.
Mom dealt with the situation as best she could, but she found it difficult to express how she felt about having a child with such pervasive health problems. People could say such nasty things when she took me out for even simple things, like to run errands. Their comments were devastating to Mom: “Look at the midget, look at the dwarf!” or “Look how funny looking he is!” One time somebody actually said I should have died in childbirth, and that both Mom and I would have been better off.
Dad was just the opposite. While the negative comments about me hurt him, he would shrug them off. His main concern was my health and finding out exactly what my condition was so we could deal with it. Dad always said that people handle things differently and that his way of dealing with adversity was to work the problem, something I emulated as I got older. I used my dad’s approach of “working the problem” to handle a lot of the obstacles in my path.
People all too often made inconsiderate comments or asked ignorant questions, to the point where my mother became afraid to leave the house.
One story I love involves an event that took place in the supermarket when I was about four. Mom and I had gotten into a bit of a disagreement. Most likely, I was just being obnoxious and stubborn. But a woman overheard us from the other side of the store. She ran toward us, and when she reached me in the cart, she declared to my mother in a stern voice, “How dare you yell at that infant!” Before Mom could respond, I said something that, well, let’s just say it wasn’t Mom’s proudest moment. The stranger was as stunned as Mom was embarrassed and quietly slunk away.
I wasn’t always that bad. But I was a tough son of a gun to take shopping. I had a way of letting myself out of the stroller by sliding down and slipping out of the harness. I might have been the size for the baby stroller, but I wasn’t a slobbering infant. I was like a very young Houdini. If Mom was preoccupied looking at clothes, I could escape and disappear on her. I was fast, too, and could walk under anything without clunking my head. Sometimes, the only way Mom could find me was when she heard a stranger saying, “Oh, my gosh, look at the size of him!” and then she’d give me that look and scoop me up. She had captured her little rascal, but I knew I could escape again soon.
There were strategies Mom devised to buffer me—and herself—from these awkward situations. Whenever she could, she tried to go to the store with friends. There was strength in numbers. She figured that way people would be less willing to make comments. There would still be the rude person who would point and say something inappropriate, but now she had support. Her friends would tell the gawkers to leave us both alone, that we are just out shopping, just like them.
• • •
I WAS DEFINITELY a bit of a medical nightmare and enigma at the same time, but I was at least making progress in some categories. As for physical milestones, I was behind, but cognitively I was ahead on the charts. For example, I was six months delayed in walking, partly because my head was so big. I would have to drag it around when I crawled, which consequently made it harder to hold up when I finally walked. However, my verbal skills were light-years ahead of the average range. I started talking at ten months. By fourteen months, I could speak in full sentences, my favorite being, “Mommy, please get me some milk because I am hungry.” I looked like an infant but had the vocabulary of a fifth grader, like a Benjamin Button without the wrinkles. What you lack in one area, you tend to compensate for in others, which might explain why I was such a talker.
My parents tried to be as well-connected and informed as they possibly could be, but it wasn’t easy. Mom kept calling different organizations that might have knowledge or information about dwarfism. By the time I was six months old, she had found out about the Moore Clinic at Johns Hopkins Hospital. The geneticist working there was Victor McKusick, the top physician in growth issues and dwarfism. Mom made an appointment for me, and Mom, Dad, and I headed to Baltimore.
Dr. McKusick was an extremely tall man. He had a portrait in his office of him sitting in a chair with a patient, an Amish Little Person, perched on his lap. The first thing he told my mother was that the doctors at Nassau County Medical Center were right about the dwarfism, but were wrong in thinking that it was achondroplasia. He wasn’t ready to commit to exactly what type affected me after only one visit, but he was going to put together a profile of my presenting conditions and send it to all of the doctors he knew around the world who were working with growth issues. If I ended up being in a unique category all by myself, Dr. McKusick said he would name it “Klein Syndrome,” after me. His charm and bedside manner finally had my mother feeling a little more at ease.
I was fourteen months old when I finally met Dr. Steven Kopits, who was also Jen’s doctor at Johns Hopkins. He agreed with Dr. McKusick that my dwarfism wasn’t achondroplasia. I had spondyloepiphyseal dysplasia (SED), which manifested itself differently. People with SED are characterized by more proportionate arms and legs; hip, knee, and ankle instability and deformities; and increasing curvature of the spine, including kyphosis lordosis and scoliosis. Unfortunately, SED is also characterized by many requisite surgeries to correct the irregular growth of the lower limbs.
First memories are always a bit suspect, because there is always a possibility that the memory is just created from overhearing someone else’s story. But this was not the case with my first memory. I was three years old, and I woke up in the operating room. I remember the lighting, the smells, the sounds, and the movements of the scene. I remember the bright, abs
olute white lights, the way I was lying on the operating table, and the crowd of people around me, even though their eyes weren’t really focused on me. There was that distinct smell that still haunts me, that postanesthesia stench that sticks inside your lungs and your nasal cavity for a long, long time. I could hear that all-too-familiar Hungarian accent of Dr. Kopits speaking in a sharp tone. I remember a nurse saying something to me, although I can’t remember the details.
• • •
EVER SINCE I can remember, Mom was always at my side. She supported me through my toughest times and encouraged me to be better. When I was very young, she would stay in my room through the night just to watch over me. When I started school, she would greet me with a smile when I came home and ask about my day. Hugs weren’t in short supply, either. We were a close family, and my mother always embraced us with a warm hug—to congratulate, to heal, to say I love you. My father, too, was very supportive and always there for me. He refused to let other people’s doubts dictate the way my parents raised me.
My mother was beautiful. Her hairstyle went through different phases, from shorter bobs to the longer wavy style when that was in fashion. When she was happy, she smiled with her eyes. When she was unhappy, I could see it in the way she looked at me. She could also express surprise, disappointment, anger, fear, and joy by the way she looked at me.
Mom was very stylish, even when money was tight. She had her two seasons of outfits, shorts and short-sleeve shirts or sundresses in the summer, and blouses, pants or jeans, sweaters, and heavy coats in the winter. She was particularly fond of her coats.
My father was in great physical shape in his younger years. He worked hard and kept up his appearance. His hair changed with the fashion of the times, and I followed his lead with things like how to part mine. However, when he went with the then-stylish perm, I elected to abstain even if it meant I was “uncool.”
Both my parents raised the kids, but my father was the authoritative one, and I admired him. His size and demeanor commanded attention. As a police officer, he was a respected figure, and everyone who had an association with our family saw him that way. Dad wore a uniform well. He looked like a cop, for sure. He wore his hat down a bit to the brow, shoulders out, back straight, no slouching. His holstered sidearm was a revolver when I was young, but he graduated to a nine-millimeter later on. I was proud that my father was a cop. He had power that not many other dads had, and I thought, foolishly, that his power therefore extended to me. To mess with me was to mess with a cop, and I could kick some serious butt like he did. When Dad looked at me, I knew it. When he smiled, he laughed along with it. When he was angry or disappointed, he looked through me. I felt it without the need for words. I wasn’t a big troublemaker, but I got my fair share of both looks.
I am the oldest of my parents’ three sons. My brother, Tom, was born two years and ten months after me, and Joe came along four years and two months after that. They did not have my condition, but they saw me go through many of my procedures and recoveries. Even with my physical limitations, being the oldest meant being responsible for my siblings. It was my duty to keep them in line, despite the fact that they quickly surpassed me in height at young ages. Tom eventually stopped growing when he was six-foot-four, and Joe reached a height of six feet. The two would always help me out when I was home and bedridden after a surgery. I often felt bad that I dominated my parents’ time. But they never held it against me. In fact, they both looked up to me as their big brother.
I was built like a Mack truck, and I always fought my battles aggressively. The age difference between my brothers and me was big enough that they were a pain when we weren’t getting along. Feats of strength were often needed to reinforce my place atop the sibling hierarchy. From traditional punches and chokeholds to the occasional throwing of a little brother clear across a room, I did what needed to be done to continue to command the respect an older brother needs to possess. That was kind of the way it went. My brothers were younger than me, and even though they were taller as well, they were not stronger. I managed to successfully establish myself as the oldest, and I was strong for a person short in stature, so, physically, I always won.
CHAPTER THREE
Jen
Dragons and Fairies
BY THE TIME I started kindergarten, my family had moved from our first apartment in downtown Orlando to a nice ranch house on a hill in one of the many planned communities that were popping up all over the greater Orlando area. My father’s new job as a route salesman for Orange News Company paid better and meant we could afford to buy something bigger, and my mother loved the idea of living in this type of neighborhood. The communities were self-contained, family-friendly, and offered lots of recreation and social events. They also had catchy names. Ours, called Rosemont, was on the shore of Lake Orlando and only about a twenty-minute drive from Disney World and downtown.
Barbara came with us when we first moved, but then, after my grandparents divorced, my grandmother and aunt Chrissy came to live with us, too. My mother didn’t mind her mother and sisters living with us. In fact, she enjoyed it, as they were a big help. I grew up very close to Chrissy and Barbara. They were not only great as babysitters and playmates, but they would also let me accompany them on their dates with boyfriends or to their high school outings. This was a sign of just how much they loved me.
Soon after my grandmother and aunt Chrissy moved in, my aunt Barbara moved back to St. Petersburg to be with her high school sweetheart, Jack, who would later become her husband and my favorite uncle.
No matter where we lived, my mom always enjoyed making sure our home felt lived-in and comfortable. She was a fantastic decorator, and to this day, I wonder if she missed her calling as an interior designer. Her flair for detail and organization meant every room was dressed to the nines.
My bedroom was no exception. My wallpaper had delicate flowers that climbed the walls from the floor to the ceiling, making it seem like I lived in a garden. Today, I might not find that floral look so attractive, but it was the rage in the early eighties. Need I say more? I had a four-poster bed decked out with a white eyelet ruffled bedspread and crowned with a matching canopy. The nightstand and dresser completed the bedroom furniture set. My favorite stuffed animals and dolls were usually lined up along the built-in shelves, as my mom was a bit of a neat freak and liked me to keep them orderly. To accommodate my short stature, my dad put a lower rod in my closet, not only making it easy for me to get to my clothes, but also doubling the space.
There were definitely enough adults around that my parents didn’t need to hire many babysitters. Because my father worked during the day, my mother chose to work at Walt Disney World at night, thereby assuring one or the other would be at home with me. If my dad worked late, my grandmother would take care of me. It was nice to have her in Orlando with us. We became very close, and she became a true confidante to me as I grew up. Chrissy always helped, too. She and I were only eleven years apart, so she was more like a big sister than an aunt. Although she went to high school during the day, she went out of her way to spend lots of time with me after school and on weekends. She loved photography and writing and wanted to become a journalist. We would dress up in all sorts of crazy outfits and take silly Polaroid pictures for hours. I have pictures of us dressed up as cowboys and Indians, Elvis and other entertainers, tennis players, you name it—we did it. We even set up a photo shoot with me hidden in the middle of all my stuffed animals, kind of like Where’s Waldo? Chrissy had great taste in music. She taught me how to sing the Beatles, Rod Stewart’s “Hot Legs,” and Elvis songs. We even made voice recordings of me impersonating famous artists as I sang some of their popular tunes. As we were both growing up together, my aunt Chrissy and I became best friends.
My grandmother had always been a stay-at-home mom. But now that she was divorced, she really wanted to get into the workforce and make some money. She found a job at Disney World as a telephone operator for Buena Vista Communications. I
used to love calling her on Disney’s main phone line and requesting “Lorraine Shipman, please.” I admired how she had gone back to work after dedicating all her time to raising her kids. I also admired how much pride she had in her job and how seriously she took it. Like my parents, she worked full-time, but her hours were regular enough that she would be home in time to make dinner when my mother was doing her night shift.
My grandmother was someone I went to for advice and just pure comfort, especially if I had gotten into an argument with my mother and father. She somehow always knew the right thing to say, and if all else failed, she would rub my back with “tickles” to make me feel better. She might have spoiled me just a little, but I loved her for that.
When my mom worked, she often came home after midnight. My dad was incredibly thoughtful, and not only would he wait up for her, he would often make her favorite meal, breakfast for dinner with bacon and eggs. My favorite nights were when he would let me wait up with him. I’d keep him company in the kitchen while he set the table, prepared his pans, and tidied the kitchen.
Mostly, though, I was to be in bed with lights out long before my mother got home. This was my parents’ one chance to be alone and decompress together. Our home was always neat as a pin and filled with love, but this was not an easy, pressure-free household. There was stress, both financial and emotional, on many fronts. There was the juggling of job schedules, surgeries, and travel for me, and like every family, dynamics to manage. However, somehow, my family always made sure I came first.
• • •
I DIDN’T REALIZE I was a Little Person until I was six or seven years old. It didn’t really matter much to me, however, and I did all the things most kids at that age did. I went to birthday parties of kids in the neighborhood, played outside, and sped around the block on whatever bike I was currently riding, with my dad or Aunt Chrissy following closely behind. Like most kids, I loved pretending, and dragons and fairies were my favorite characters. It was not unusual for all the neighborhood kids to gather on our lawn while Aunt Chrissy, Dad, and I started a game of “dungeons and dragons.”
Life Is Short (No Pun Intended) Page 3
