My school, Rolling Hills Elementary, was directly behind our house, but in another subdivision called Pine Hills. It was too far for me to walk, but too close for busing, so my mom or Grandma would drive me there and back, which wasn’t horribly inconvenient for them. To get around the hallways, I had my Chubby Chopper, a tiny plastic yellow tricycle that fit me perfectly and moved like a speedboat. My best friend was a girl named Cara, who lived so far at the outskirts of town that her property was like a farm, with tons of farm animals. I always looked forward to playdates at her house for fun with her family’s horses, cows, and goats.
When I was seven, my brother was born. My parents later told me that they had held off having a second baby until they had genetic counseling to determine the odds of having another child with dwarfism. Since neither of them was a Little Person, and my type of dwarfism is a dominant trait, the likelihood of the same genetic mutation was nominal. As much as my parents adored me, my mom didn’t think she was capable of raising another child who needed so much medical attention. I think she still feared for my own happiness and long-term potential, and didn’t want another child to have to go through the same struggles she saw me having to endure. It was very emotionally taxing for her and had taken a serious toll on her coping skills.
The morning my mother went into labor, I went to school, knowing that I was soon going to have a baby brother. My parents named him David Eugene, and even though he had my dad’s first name, he wasn’t officially a junior. His middle name was chosen in honor of my grandfather Issac Eugene Shipman. My grandfather, whom I called Papa, had four children—one son, my uncle Wayne, who was the eldest, and after that, three girls. He had always wanted another boy, whom he wanted to name David Eugene. My papa had a heart attack days before my brother was born, so when my mom delivered my brother, they were both in the hospital. After the delivery, my mom called Papa, and the first thing he said was “How is my David Eugene doing?” That was how my brother got his name.
A year later, my papa had a second heart attack, and this one took his life. Even after my grandparents’ divorce years before, I had stayed very close with my grandfather. He meant so much to me that some years after his death, I had a dream that I went up to heaven to visit him. I sat on his bed where he was watching football, which he loved to do, and we had the most amazing conversation. He told me about the afterlife and that he was watching over us and that most important, he was all right.
My brother was a full-term, average-statured newborn without any presenting medical issues after birth. He was home with us in twenty-four hours. My parents were thrilled to have a second child, especially a boy, join the family. I don’t recall being particularly excited or upset about having a baby brother, but I did know that I loved him from the moment he came home. He was a very cute newborn, and I liked holding him, but once he started walking and running around like a typical toddler, slowly morphing into a menace who liked to make a mess of my room and crash my slumber parties, it was a different story. Turns out brothers and sisters can be very different, not always compatible, but always lovable.
I think some of the bantering David and I had growing up likely related to our age difference and the fact that he was a boy, which in my mind meant we didn’t have much in common. It also might have been because of all the medical attention I needed. With medical attention came other types of attention from family and friends. I cannot imagine how hard that was for him. Because he wasn’t having surgeries all the time, I was also confused. I actually asked my mom one day, “So when does David have his first operation?” Similarly, he even once asked my parents when he was going to have his surgeries, possibly because he saw me getting presents and lots of attention before, during, and after all of mine. The strain of having a child in the family with complex medical needs can be a challenge for both younger and older siblings.
Early childhood was at times good and at times bad. Yes, the house was more chaotic, and I had to share my family with my brother. But I was also at an age when kids really began to notice differences between one another. My kindergarten graduation was the first time I noticed that I was truly shorter than everybody else. I remember an incident in the first grade when we were playing tag in the field, and another boy yelled at me, “Why do you have such a big head?” I didn’t acknowledge him at the time, but when I came home and reported this event to my dad, his response was, “Next time, tell him it’s because you have more brains!” That was my dad, always quick with funny retorts!
In second grade, the movie Annie came out, and I adored it. My good friend Kristie, who was a budding theater buff, and I were bonded by our love for Annie. We would sing all the songs out loud together and watch the VHS over and over every time we had a playdate. These “girl times” were extraordinary, but when Kristie tried out for the part of Annie at one of our local theaters and landed it, I was a little jealous for the first time. I wasn’t envious in that mean way, as I knew Kristie made a great Annie, and I even got to see her in one of her shows. But I, too, loved the character of Annie so much, and I had even dressed as her the previous Halloween, orange wig and all. I knew deep down that I could be a good Annie. I wondered—if I had tried out, would I have gotten it? Or would they have dismissed me because I was a Little Person? I would never know, because I never tried out. That was a lesson I would learn from this experience. I knew I had limitations due to my stature, but you can never succeed at something if you don’t try.
As a young child with dwarfism, I missed some typical opportunities for fun. My parents wouldn’t allow me to go to water parks, even though all my friends were going, because despite swim lessons, I couldn’t swim, tread, or float in the water due to my skeletal dysplasia. I couldn’t ride certain rides with height restrictions at Disney World. Despite the fact that I really wanted to play the violin, my mom couldn’t find an instrument small enough to fit me.
Things like this were very upsetting, but ultimately I learned I had to deal with these challenges and overcome them in order to be happy. If I was upset, my mother would always remind me that these were minor defeats and there was so much more I could do. She would tell me not to wallow in self-pity, as it wouldn’t do me any good. She told me how much I had to be thankful for. My aunt Chrissy would also advise me that no person or situation made us happy or sad. Our emotions were our choice. As I grew older, I came to realize that if I wanted to be happy in life, I had to make myself happy, or at least not let obstacles or disappointments overpower me. This was the life I had been given, and I needed, more important, wanted to make the most of it.
Of course growing up I had many positive experiences, too. Sports activities were not exactly in the cards for me, but I found other ways to participate in competitions. With my mom’s encouragement, I entered my very first dog, a miniature collie named April, in a special dog race for family pets at the Sanford-Orlando Kennel Club in Longwood. To my delight, she won honorable mention, and we both went home with smiles and a ribbon.
Dogs, judgment-free and unconditionally loving, were a mainstay of my childhood. April was even more important, because she was my dog, given just to me by my parents. Her previous owner was one of my mom’s colleagues at Disney World, and she came to me when she was just out of her puppyhood. I nicknamed her Boo Boo (mostly because I was not a fan of her given name, April) and personally taught her many of her winning tricks. I was so proud when she won the special “Race Your Pet” event at the greyhound racetrack. The best part was that the local newspaper ran a story featuring us. I might not have been Annie, but Boo Boo and I were stars.
CHAPTER FOUR
Bill
Kindergarten, Here I Come!
I GREW UP IN PORT Jefferson Station, a typical suburban town on the North Shore of Long Island about sixty miles east of New York City. The area was then called Terryville, a small hamlet in the town of Brookhaven. It was a typical suburban landscape, with newly built homes in three or four different styles of ranches, split lev
els, and colonials.
My parents picked a house to buy in a location that would best serve my needs. They understood that I was a Little Person who might have a problem with walking to and from school or climbing the steep three steps of a school bus, so they chose a house that bordered the schoolyard. My school days were still a couple of years off, but my parents were planning ahead, especially as “mainstreaming” children with mental, emotional, and physical disabilities into the student population was just beginning to become policy. My mother had heard from different people who had children who were “little” that it wasn’t easy. These parents were having a hard time getting their children into the schools. The school districts didn’t want to deal with issues or accommodations; they didn’t want to do anything different for the kids, really. Even though the Education for All Handicapped Children Act of 1975 was now in place and schools had to provide for children who were different, my mother was still afraid there would be a glitch, and I would end up being steered toward a “special” school that could accommodate me.
By taking my need for busing out of the equation, my mother had one less thing to worry about. A house next to the school was perfect. Just a few hundred feet between our house and the back door to the school meant no bus, minibus, or special bus after kindergarten. Just my Keds and backpack.
I started at the Boyle Road Elementary School when I was five years old. I took the bus at first along with all the kids going to school for the first time, and it wasn’t the easiest task to climb up the steps, but I did it. And once I got to school, I could see my house from the classroom, and on occasion, I would look toward the backyard to see if there was any activity. Sometimes, I would see Mom doing something back there, but I didn’t necessarily know what. I was happy and reassured that I could see her from school.
Mom had already taken a very active role in the school, which helped her feel a little in control of our situation. Our neighbor, who was one of her best friends, had signed her up for the PTA before she could even think about it. She came over one day and told Mom, “You are coming to the next meeting, you are already a member, and you will love being involved.” It was perfect, because my mother was on the shy side and not very outspoken. However, with that small push, she quickly made herself known to the entire elementary school staff, teachers and administrators alike. She understood that when you have a child with special needs, you need to be outspoken. For example, following the doctor’s advice, Mom made sure that all my health forms stated that in the event of a fire or fire drill, I was to be carried out of the building so that I wouldn’t be lost or trampled. In fact, somebody was required to double-check that the teacher had me. Later on, my father, a volunteer in the Terryville Fire Department and eventually a captain there, created a training program that was piloted at Boyle Road Elementary, in my classroom, to help ensure all students learned about fire prevention and how to evacuate a home or school.
By the time kindergarten orientation for parents rolled around, Mom and Dad were my advocates almost to a fault. The staff had heard so much about me and was so well prepared that one of the kindergarten teachers came up to Mom at the meeting and said she had just finished a course on teaching children with special needs and was looking forward to having me.
“One question,” my mom said, “are you a pushover or are you a tough, strict teacher?”
At the response that the teacher did not consider herself strict, my mom announced her decision. “I am very sorry,” she replied, “but you can’t have Bill in your class. He is a charmer and can melt down the strictest of the bunch, so he will certainly take advantage of you. I need someone who is able to see past his charm.” My mother felt bad, because she knew the teacher had gone out of her way, but Mom knew me all too well!
Still, it didn’t take long for me to notice children around me treating me differently because of my size. My friendships were not the same as the friendships between other kindergartners. Some people would bully me and others would pick me up and tell me how cute I was. I heard the word “midget” being thrown around, too.
My mom always knew the situations in school between my classmates and me, even if she didn’t hear something from me. She was that well-connected. One time, Mrs. Muller, the teacher Mom had handpicked for me, called her up.
“We have a problem here, Mrs. Klein,” she told her.
“What is the problem?” my mom inquired.
“Billy’s got a fat lip.”
“What?”
“Yeah, one of the kids here just keeps picking on him and I have no idea how to stop it.”
My mother knew how to stop it. “Do me a favor,” she said to Mrs. Muller. “Call up the mom of the child and ask her to call me. I want to invite her and her son over to my house for lunch, and I want him to see that Billy is just like him. I want him to see Billy has a bedroom, a play yard, all kinds of toys and books, and a really nice family, just like him.”
It all worked just as Mom planned. The kid and I remained friends throughout elementary school, junior high, and high school. Mom knew that was the best way to treat bullies—invite them in rather than shun them or fight back. Everybody had to get involved, the families, the kids, and the parents. Mom said that sometimes we couldn’t know what was going on in the other household, and maybe that child was having some other problem, and that I was just an easy target. Mom really was a remarkable mother who tried to work with understanding rather than anger.
My father was also there in my defense if it was ever needed. From consulting with me on how to handle a situation to showing me how to defend myself, my dad made sure I had the tools to take care of myself in the event I didn’t have anyone to back me up.
Still, things happened. One time in class, the kindergarten built a papier-mâché volcano several feet high. It was so big it covered the entire top of a round table in the classroom. As the vinegar, baking soda, and red dye number five concoction, which was the lava, bubbled over the mouth of the volcano, I was surprised to see one of my classmates motioning for two other boys to pick me up. Sure enough, they lifted me up and held me over the active volcano, although they never did actually put me in it. I knew they were picking on me because of my size.
For the most part, my early childhood was not compromised by my stature. In my mind, it just couldn’t be. I was not in the least bit “sickly.” In fact, I was robustly active and always on the go, unless it was bedtime. Even then, my parents couldn’t count on me to turn in. There was almost nothing that anyone else my age was doing that I thought I couldn’t do as well, if not better.
Like most of the boys in my neighborhood, if I wasn’t in school, I was busy with activities. I was a Cub Scout in Pack 603, played Little League baseball and flag football, playacted soldiers and army with my friends, and rode my bicycle around the neighborhood. But I didn’t have to be with other kids to create fun. If I was on my own, I played in the fields and the woods around my house, swam with supervision in our pool in the summer, occupied the clubhouse that my father built for me with his own hands, and rode my Big Wheels and bicycle—nothing like a boy and his bike.
With so many boys, my parents needed a lot of rules in the house. They didn’t coddle me, though. They just let me be a boy, the same way they treated my brothers. We had routines and chores Mom wanted us to do—cleaning, meals, homework, and so on—but she also trusted that we could take care of ourselves while giving her enough respect to do what was needed. We were responsible for our evening baths and showers, or lack thereof. We honored her bedtime for us, but once we got into bed, we could stay up and watch television if we wanted. Mom wouldn’t say much about it to us, except “Good luck waking up tomorrow morning.” She knew we’d have to learn to regulate our sleep time on our own when we saw how tired we were in the morning.
As I got older, I really loved Robin Williams as Mork in Mork and Mindy. Everybody I knew tuned in for Robin Williams’s extraordinary physical comedy and his brilliantly absurd charac
terization of Mork from Ork, but beyond enjoying it, I related to it. Mork reminded me of me. Through no fault of his own, he found himself witnessing human behavior and social norms as an adorable outsider. If things got sticky, he extricated himself with humor. He was on the border of being a regular guy, but if it ever bothered him that he wasn’t like everybody else, he managed it and emerged the better at the end of every show.
The Princess Bride was my favorite movie, which still holds true today. Again, you had this trio of completely lovable outlaw misfits—the incredibly short (though not a Little Person) criminal mastermind, Vizzini, played by Wally Shawn; Inigo Montoya, the absurd Spanish swashbuckler hell-bent on revenge, played by Mandy Patinkin; and my antithesis, Fezzik, a giant Turkish wrester—truly a giant! Fezzik is played by André the Giant, a Frenchman who in real life was seven-foot-four, so tall that by age twelve he could no longer ride on a school bus. These three characters didn’t fit in any normal sense. They were too odd, too weirdly clever, but charming, though you couldn’t put your finger on why. They all far surpassed in humanity what you would guess by their looks. And they were funny, which happens to be the characteristic of being human I like best.
Besides TV and movies, my pets kept me entertained. We always had a lot of them. There was Lassie, a cat, not a collie, who brought eight more cats in when she had kittens. We also had a schnauzer named Rascal, a mutt named Coffee, a Maltese named Teddy Bear, and the niece of Teddy Bear, Midnight, nicknamed Middy. Middy was affectionate and loyal. She was my sanity during many of my post-op stints at home, when I was in casts and barely mobile. I remember the times when everyone else in the house would go upstairs to their bedrooms, and I would be left in my temporary quarters, the living room with the rented hospital bed. With everyone fast asleep, I would lay there in extreme discomfort, alone, helpless, and in the pitch-black dark. But Middy would always stay with me. She would often go to sleep on the cast itself, not caring if that was her least comfortable option.
Life Is Short (No Pun Intended) Page 4