Life Is Short (No Pun Intended) Page 5

  We had smaller pets, too, beyond the cats and dogs. We had hamsters, which ate each other and their offspring, and a couple of parakeets, Tweety One and Tweety Two, that found life too challenging and met their demise by falling from their perch and breaking their necks. I once had a turtle, until Mom accidentally boiled him. She had put him outside, thinking he would like warming up in the sun, but maybe because of the lack of shade, he got sunstroke. I didn’t know anything about it until after the fact. Mom tried to save him by throwing him in the little wading pool in the yard, but he did the dead man’s float.

  CHAPTER FIVE

  Jen

  Scootering Around

  IN THE MONTHS BEFORE fifth grade, my mother and father started getting back into religion. They hadn’t been going to church much since our move to Orlando, even though my mom had been raised Catholic, which had a mandatory church attendance precept. Now, with two children, she missed the sense of community and comfort that comes with Sunday mass.

  My dad had never been a Catholic, but he was willing to take classes and convert. He had been raised as a Southern Baptist, but had not practiced since he was a kid. After he was baptized into the Catholic faith, he and my mother renewed their vows in a Catholic ceremony, and David and I did our sacraments—David was baptized, and I had my First Communion.

  When the fifth-grade school year began, my mother moved me from public school to parochial school. Not only did she want me to have an education with religious study, but she also thought St. Charles Borromeo Catholic, the Catholic school I would be attending, might be a safer and more supportive school environment for me. The class sizes at Rolling Hill Elementary were getting ridiculously large, as the Rosemont/Pine Hills neighborhood where we lived was expanding rapidly. She liked the idea of my brother and me going to a Catholic school like she had, where Catholic religion, faith, respectfulness, and kindness were part of the education. I was perfectly happy to leave Rolling Hills. My friendships were changing. Kristie and I had drifted apart when she began becoming part of the popular crowd, and although I would miss my friend Cara, we were still going to have play dates on weekends.

  When I started at St. Charles in the fifth grade, my brother started preschool there. I also retired my Chubby Chopper and got my first motorized scooter, called the “Pony.” It was a battery-powered, three-wheeled scooter designed for kids. It had a sailboat-like tiller for steering, an adjustable seat with lumbar support, and three speeds—slow forward, faster forward, and slow reverse. It even had a little wire basket on the back where I could put my books. At first, I was a little afraid to ride it, since I was the new kid and was worried I would feel embarrassed in front of my classmates. But soon everyone wanted to take a ride on it. Sometimes, in good fun, my friends would write me “speeding” or “parking” tickets and leave them on my seat for me to find when I came out of class. During festive times at school, like the week before Christmas, we would dress it up with garlands and ornaments.

  There was only one class per grade, with thirty students in each class, and I really appreciated how everyone knew each other and for the most part were friends. Despite all the ways the school tried to promote diversity and the idea that everybody is special, I still had nagging moments of feeling like an outsider. There was no question that I was liked, and that my friendships were sincere, but even now, it is hard to describe how I viewed myself in the bigger community. I worried, not obsessively, that my friendships weren’t the same as those between other children. I mean, I had lots of friends and I was well known even in the other grades, to the point that pretty much everybody in the school knew who I was. However, there were moments, usually during social and extracurricular activities, when I felt like a bit of an outsider, as if I was accepted, but it was conditional and could change at any time. I wasn’t confident in the stability of my friendships. I had been dealing with so many health issues and surgeries that I came into middle school having a very different childhood experience than most kids.

  The fact that I looked different, too, and had to ride a scooter in the halls, often made me question how others perceived me. It was tough, but I learned to persevere, trying to keep the focus on all the good people my childhood afforded me, and all the good times. I tried to enjoy friendships and social events and not focus on moments when I felt left out, but there was always a certain amount of social stress.

  In the long run, I was very thankful my parents transferred me to St. Charles. It was a good fit for me. It turned out I did pretty well in a strict Catholic school environment. To this day this seems odd to me, but I had, and to a certain extent still have, a people-pleaser personality and liked to do the right thing. In Catholic school, there was little doubt about what was right and wrong. That worked well for me.

  Additionally, Little People tend to grow up fast because of our life experiences. I had a tendency to relate more to and enjoy the company of adults over other kids. Relationships with adults seemed more solid and less tenuous. From as early an age as six, I loved late nights of staying up and “catching up” with the grown-ups around the kitchen table after my mom got home from work. I could sit for hours and talk about their gossip. I always liked to be “in the know.”

  My weekends and school breaks were often spent at the beach in St. Petersburg with my aunt Barbara and uncle Jack. Their home was located within a few blocks of the Gulf of Mexico, and it became a tradition for me to visit with them on weekends and every spring break and summer vacation that I wasn’t having surgery. My aunt Barbara was my ultimate beach buddy, and she still is today!

  My mom would drive me down after school on Friday and we’d usually be there by dinnertime. Sometimes she’d stay the whole weekend, but more often than not, Aunt Barbara and Uncle Jack would take care of me for the three days. They were like surrogate parents. When my aunt Chrissy was a little older, she would drive me down. I liked this best of all, because it would turn into a girls’ weekend.

  My time in St. Pete Beach was centered on die-hard days at the beach, rain or shine. Then we would go back to Barbara’s house, shower, and head out to a fun seafood dinner. Usually one night we would stay in, order pizza, and “hang with Jack,” and he would school me on classic rock and TV. The entire weekend would be so filled with activities, especially at the beach, that it seemed as if I had just arrived when Sunday came. We could be at the beach for hours (and I mean hours) if the weather was good. Unbelievably, I didn’t burn, and even if I did get a little red, it would fade into a tan in no time. I think my grandfather on my father’s side being a quarter Cherokee Nation had a lot to do with my tolerance for the sun. We used sunscreen some of the time, but back then it wasn’t really as common. (Now, my parents can’t believe how much of a stickler I am for lathering my kids up every time we are outside.) I would spend hours sitting right at the water’s edge, the best place to collect shells. I didn’t need to worry about getting knocked down by the waves. The Gulf Coast didn’t really get waves unless there was a hurricane.

  I loved walking into the water, even though I was not really a good swimmer. Because of my body structure and orthopedic issues, I had trouble keeping my head above water. I am like a marble and just sink to the bottom of any body of water. Because of the shape of my rib cage, I also have a restrictive lung disease, meaning no matter how fully I inflate my lungs, I still won’t be able to do the dead man’s float like most people, but rather, I sink like a stone, lungs fully inflated. However, with a snorkel, I could swim forever . . . well, almost.

  Aunt Barbara and Uncle Jack have always been big animal lovers. My aunt worked in a veterinary clinic and loved taking in rescues, to the delight of Uncle Jack. They always had tons of cats and a few dogs. Inevitably, some of our beach time would include taking the dogs to a dog-friendly beach. My aunt actually gave me my first kitten. There are many pictures of me sleeping on the couch in St. Pete with anywhere from four to five cats surrounding me. I became a big animal lover, too. I always had pets—dogs, c
ats, fish, turtles, guinea pigs, and birds. Not all at once, of course.

  • • •

  BEGINNING IN THE sixth grade, I became part of a best friends’ threesome—Kimberly, Anna, and me. Kimberly was very pretty with lots of freckles and shoulder-length brown hair. Because she lived only a few streets from me, we could ride bikes to each other’s houses, which was really nice. Anna had thick wavy dark hair and a bubbly personality. She lived farther from Kimberly and me, but so close to St. Charles that her property actually shared a backyard fence with the school. This meant her house was extremely easy to get to for after-school fun and homework.

  Being in an official girlfriend group thrilled me beyond my wildest dreams. The three of us spent most of our after-school hours and weekends with each other, indulging in sleepovers, going to the movies, and doing girlie things. We’d spend hours doing each other’s hair and making friendship pins out of beads, which we wore to signify our unity. As we got further into sixth grade, the practical jokes began. We’d freeze the bra of the first person to fall asleep or smear toothpaste all over her face. One of the get-togethers I remember the most was the weekend we spent at a beach condo rented by Anna’s family. Her mom invited Kimberly and me to join them, which was incredibly generous. For sixth graders, there was nothing more fun than being together on an exotic adventure. We spent three days hanging out by the pool, boy-watching on the beach, and messing around in the surf. This was one of those weekends when I truly felt like one of the girls!

  Then, after an uneventful seventh grade with my girl gang, things changed. One day early into our eighth-grade year, I suddenly stopped being invited to things. Kimberly and Anna were still hanging out at Kimberly’s house, but without me. They’d go to the movies, do homework together, and seek each other out, but without me. They didn’t invite anyone else to replace me, per se, but they turned into a twosome while I was left out entirely. It was unbelievably painful, as my self-esteem with these guys as my friends was at its best ever. The thought that maybe I wasn’t cool enough to hang out with them anymore plagued me. I confronted them about dropping me, and they confirmed they had been doing things together. They weren’t even particularly mean to me, but they were steadfast that they were fine with the new “twosome” arrangement, and I was out.

  It was too hard to think about why things had changed. I had many theories, but none that eased the pain. My leading theory was that because they were starting to get interested in boys, I must not have been a boy magnet and therefore not cool enough to hang out with anymore. No specific event seemed to precipitate this change, as there had never been a fight or even an argument. What was so hard was the fact that this change happened without any warning or even an explanation.

  For the first time in my life, I felt rejected because of who I was, a Little Person. This was one of those moments when I learned the value of putting a protective barrier between others and myself. It wasn’t that I didn’t want to continue to create and develop close friendships, but I knew I had to be cautious, because I didn’t want to feel that pain again.

  CHAPTER SIX

  Bill

  Down Days and Tough Times

  AT AGE EIGHT, MY height and my skeletal problems really started to put me at a disadvantage on the athletic field, and I hated it. This was the age when competitive sports were becoming the be-all and end-all—not only participating in them, but winning.

  More than anything I dreaded Field Day, which was nothing but a hot, humid Indian-summer day filled with the spirit of bloody combat. The chance of my winning anything in the individual competitions was nonexistent. For the battles of the two sides, my particular contribution was irrelevant. If I was on the red team, and we happened to win, it had nothing to do with me. From strategy to execution, my involvement was strictly related to attendance.

  It wasn’t just during Field Day that things were changing, and it wasn’t just because of sports. I couldn’t deny it—kids in school were really beginning to pull away. I didn’t really have a great school friend who was my age who wanted to hang out with me after school. I would see people at school and everybody was always friendly, but they didn’t want to do anything with me out of school.

  For a while, I had Jason Pasternak, a schoolmate who was almost forced to be in my company. He became my best friend in a circuitous fashion. It was fourth grade, and he was the smartest kid in the class. Mrs. Sorley, our teacher, was teaching us how to convert improper and mixed fractions, and I was having a problem with it. For whatever reason, I wasn’t getting it. In frustration, I threw a pencil in her direction, which got her very upset with me. As punishment, she appointed Jason as my in-school tutor to help me. I resisted, since we weren’t really friends, but I started studying with him when I was told I had no choice.

  By fifth grade, we were best friends. The summer before, I had undergone a surgery and was in a wheelchair when school started, and Jason would enthusiastically push me around from the classroom to the lunch room or library, to the gymnasium or the enriched science class. We were almost inseparable. We’d go to lunch before the rest of the classes and celebrate our unfettered access with a chocolate milk and French bread pizza, and get our pick of any seat in the house. Afterward, recess was often spent playing together or sitting on the curb in the parking lot. Boy how things have changed.

  For winter vacation, Jason went to Florida with his family and he never came back. From what I remember, he had an allergic reaction to something so severe that it sent him into anaphylactic shock, and he couldn’t be saved. He was only ten years old.

  My two best friends, Andria and David, were from my neighborhood, but they were older and not in my grade. Dave was four years older than I, and Andria was a year older. Our social time took place after school. I didn’t even realize how most cliques of this age didn’t cross gender lines. But we three made up the coolest clique there was. Our three houses were fairly close together, with me on the corner, and Andria and David two and four houses down respectively. These were my most favored friends of all time. To this day, I speak with both of them. Of course, the subject matter has changed, though I can’t say it’s any more mature in content.

  Dave used to get a little guff for hanging out with a younger kid. But I was mature for my age, probably because of my circumstances. I am fairly certain that people who have a medical issue or other serious challenges in their childhood tend to mature ahead of their peers. We grow up quicker and lose a little bit of our childhood. When I reached a certain age, I had to sign a release before every surgery in which I acknowledged that I understood there was a chance I might die on the operating table. That was an adult situation that I was presented with on a rather regular basis. I grew up realizing that kids older than me were easier to get along with, more relatable.

  Dave’s, Andria’s, and my parents were all friends, too. However, when Andria’s parents split up, the dynamics of the group changed. It wasn’t a couples’ thing anymore, so the group didn’t hang out like it used to.

  Not long after, my parents also separated. I have no doubt all my surgeries and needs put an enormous strain on my parents’ marriage. They had heard from the very first meetings and symposiums at Johns Hopkins that parents of children with disabilities divorce almost twice as often as couples without that kind of stress.

  I still felt guilty that I needed so much attention, which had denied my brothers their fair share of my parents’ time, largely to their detriment. While I was sure there was some resentment on their part, I also believe they let it go quickly, knowing it was not intentional, and that I didn’t want the attention anyway. I loved and still love my brothers as much as any brother has in history.

  I found out that my parents were getting divorced by accident. There wasn’t one of those joint parent “we love you three boys, just not each other” conversations. Instead, one night, I woke up to discover my mother crying into her hands at the kitchen table, alone, angry, and abandoned. I didn’t even know what
to do or how to respond. I stayed with Mom a few minutes, but she wanted me to go back to bed, and I did.

  As a person with a disability, I was used to dealing with grown-up situations, as I had been dealing with them for a long time. But when my parents split, I went from being the oldest of Mom’s three sons to being her best friend, man of the house, primary helper, and concerned older, mature brother to Tom and Joe. The pressure was enormous. The situation was difficult for everybody.

  After my parents’ divorce, my dad married Debbie, who became my stepmother. Her two sons, Jonathan and James, who were just two months younger than Tom and me, became our stepbrothers. Dad and Debbie bought a house in our town so Dad could be involved in our schooling. The four of us, Jonathan, James, Tom, and I, attended the same junior and senior high schools. My brother Joe was much younger, so he didn’t have a sibling, blood or step, to go through school with. For the most part, the five boys got along very well. All things considered, the relationships we had as siblings, blood or step, helped provide the stability necessary to get through such a challenging time in our lives.

  At my mom’s house, I was suddenly the man of the house after my parents’ separation, and I tried to look out for everybody. My mother was simply overwhelmed. She was thrust into being a single mom with a mortgage to pay and three kids to feed. She had minimal work experience, so she returned to school to work toward her degree. My dad worked three jobs to support two households, and, as anyone who comes from a divorced family can attest to, money got stretched really fast. Ultimately, public assistance and welfare were Mom’s only option.