MY MOTHER AND FATHER, William Walter Klein, Sr., and Barbara Jane Diecidue, were both from Long Island, New York. They grew up only a few miles from each other, as my father was from Levittown, a five-minute drive from Mom’s hometown of North Massapequa. They met for the first time when my mother was in her senior year of high school, and my father, three years older, was home on leave from the army. He had been stationed at a base in Alaska.
They started their relationship as pen pals. A friend of my mother’s was “pen palling” with my father, which was a common thing to do with soldiers back then, and she thought my mother would enjoy it, too. Mom didn’t know it, but this friend, a former girlfriend of Dad’s, suspected the two might be a good match.
My parents’ first in-person date was actually when my father was home on Long Island for a twenty-one-day leave before being shipped to Southeast Asia for a tour of duty in Vietnam. By then, he and my mother had already been “dating by mail” for one year. The story goes that when Dad came to Mom’s house to take her out, Mom’s younger sister, Lori, answered the door. According to Mom, Dad probably thought that Lori was his date and was surprised when his real date, the little preppy schoolgirl named Barbara (my mother), popped up behind her.
Dad volunteered to serve in Vietnam, and in 1970 he was deployed to serve one tour of duty. Shortly after arriving, he volunteered to serve as a door gunner on a UH-1H helicopter and was immediately assigned to an aviation detachment stationed in Phu Bai. Afterward, his unit was relocated to an airbase in Da Nang. When not flying, Dad and other members of his unit visited orphanages in hopes of helping some of the kids displaced by the war. I think that is what my father is most proud of. It speaks to both his character and the character of the other servicemen who served with him in Vietnam. Like most veterans, my dad never really speaks about Vietnam or the war. I know he was (and still is) proud to have served our country.
I was born on October 13, 1974, at Mid Island Hospital (now St. Joseph’s) in Bethpage, Long Island. The doctors knew immediately that something was wrong.
To begin with, I was cyanotic, a blue baby, which meant that I had some sort of heart malformation that prevented my blood from being fully oxygenated. I was in respiratory distress and had to be provided with oxygen in order to breathe. But there was also something really wrong with my proportions. I was seventeen inches long, fairly normal, but the concern was I was all head and torso, with very short appendages, so there was definitely something not right.
My parents were actually taller than average. My father was exactly six feet, when the average height for men at that time was five-eight. In fact, my mother was five-eight, four inches taller than the average woman. There was tall stature in the genetic pools of both their families as well. My mother’s brother is six-four, and an uncle on Dad’s side is six-two.
It has been speculated that my father’s exposure to Agent Orange while serving in Vietnam was a contributing factor to my short stature. The exposure, which can result in flu-like symptoms among other things, is now known to denature the sperm’s DNA, causing random mutations. But they don’t know for sure if what happened was a mutation associated with exposure to Agent Orange or if it was a true random genetic mutation.
The delivery took a long time. At one point the doctor sent my father home and promised to call when I was closer to making my debut. Just as my father was arriving at my maternal grandparents’ house, the phone rang. A nurse from the hospital said the doctor wanted my father to know I had been born, but that something was terribly wrong. He added to “not rush.” Not rush?! My father drove at breakneck speed from North Massapequa back to Bethpage in less than five minutes, a ride that normally took double that. The doctor who had delivered me had already disappeared. According to my father, he was so seemingly nervous or unable to negotiate the terms of my novel condition that he never returned, ever. None of us ever saw him again.
Dad demanded to see me as soon as he got to the hospital. The baby nurse in the nursery held me up so he could see me through the glass window. He was in shock when he realized the severity of my condition. As the day progressed, the doctors and nurses were at a loss for words. But wanting to help in some way, they moved my mom to a private room, something that was unheard of then. With Mom not yet knowing exactly what was going on with me, Dad made the decision to decline the private room, fearing it would cause her undue stress. He also knew that this decision would dictate how my life would be, and he didn’t want me to be segregated because of other people’s prejudices, even if their intentions were good.
Nobody knew how my mother would handle the news, so for a couple of days, the medical team taking care of me avoided bringing me to her. Because of the difficult delivery, she was heavily medicated, and they told her I was still getting treatment. Finally, three days after I was born, my mother absolutely demanded to see me, so a nurse on the unit got up enough nerve to carry me in, hand me over, and run out of the room.
My mother’s sister was a nurse in the hospital, but even she didn’t know exactly what was going on. She knew the buzz that it was bad and everybody was upset, but other than that, my condition was still a mystery. I was baptized many times over just in case I didn’t make it.
I can’t fathom the fear my mother must have had. Her first baby, her little bundle of pride and joy, had arrived, and everyone on the medical staff was scratching his or her head, bewildered. You can almost imagine my mom, in her room agonizing, scared, wondering, and waiting, the door closed to the conversation of the doctors going on in the hall. The secrecy made it even more difficult, as the doctors seemed to be mumbling things to each other, but not to her. My parents only had each other.
At one point, the pediatrician came in to talk to my mother. She told Mom she didn’t know what was wrong with me; as far as she could tell, I only presented as “short.”
“He’s a dwarf, isn’t he?” my mother blurted out, which caused the pediatrician to almost fall over in disbelief. Mom knew of somebody whose child had growth issues, and doctors were considering dwarfism. Otherwise, she probably never would have come up with this idea, but the pediatrician was in no way ready to agree.
My breathing issues continued for at least four days, so finally the decision was made to send me to the NICU at Nassau County Medical Center in East Meadow, now called Nassau University Medical Center. The neonatologist from that unit who had been assigned to my case came with the NICU transport to collect me. I was lying in the isolette that I would be transferred in, and he wheeled me over to my mother and told her she could say good-bye to me now, if she wanted.
“No, I am not saying good-bye to him,” she responded with defiance. “This is ‘hello,’ and I will see him later.” She said that after she gave the specialist this correction, she and I made complete eye contact, which is very unusual for a newborn. With my big blue eyes, I told her, “I am not going anywhere, Mom. I’ll see you soon.”
Not long after my departure in the ambulance, Mom was also discharged and my parents were by the side of my isolette within an hour. They kept vigil in the NICU for hours every single day for the next three weeks. There was one doctor on the unit who said he thought I had a form of dwarfism called achondroplasia, because of my very large head and very short arms and legs. This was the most common form of dwarfism, characterized by short limbs and a large head with a prominent forehead. Apparently, if you stretched out my arms and lifted them up, they didn’t reach the middle of my head.
Having a baby in critical care without a diagnosis was extremely hard on my parents. They had two or three relatives and five or six friends who were having babies at the same time they were, and those babies were all healthy and thriving. In time, they learned there was a better shot at getting hit by lightning three times over than being born with my condition, but at the moment, they only had questions without answers. It was almost a miracle that I made it.
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, absolute 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.