Turners Syndrome Camp Memoir
Erin Vukelic
LENG 111
September 21, 2006
I’ve always disliked being short. One reason is that people always think I’m younger than I actually am. In elementary school, people would always think I was a grade or two below my actual grade level. I was always the last in line in elementary school because it always went from tallest to shortest. I did, however, used to like those old carnival games where you paid a man to guess your height, weight or age because it usually guaranteed me a prize. I hated being smaller than average. It was always a difficulty trying to reach tall shelves or dishes in the kitchen. Other kids in school called attention to the fact that I was the shortest one in the grade. I might as well have had a giant bulls-eye sign on my back.
Why would comments about my physical stature matter so much to a young girl like me? Few people who know me are aware short stature is the most prominent feature of a rare disorder called Turner’s Syndrome. Turner's Syndrome is a chromosomal disorder which only occurs in females and results in the absence of the last X chromosome. Turner's Syndrome is so rare, it only occurs in 1 of every 2500 births with a 5% success rate. In addition to short stature and delayed bone maturation, there are a variety of other effects which include strabismus(or “lazy eye”), lymphoedema ear infections, more moles than normal and a high arched palette in my mouth as well as learning disabilities. As “Turner Girls” get older, they are at risk for osteoporosis, heart defects and thyroid problems.
I had never met anyone else with Turner's Syndrome in Buffalo, except for some girls who attended the same endocrinology clinic as I. However, my cousin Karlee who lives in Denver also has “Turner’s”. During my freshman year of high school, she let me know about a camp for “Turner Girls” which was going to take place near her home in the summer. There were going to be many activities, including horseback riding, canoeing, dancing, arts and crafts, a ropes course, campfires, hikes, camp wide games, makeovers, karaoke and even a sleepover in the woods.
During the next few months, everything fell into place. There were endless amounts of forms to complete, from health and safety information to our food records for the nutritionist sessions. We arranged for me to fly into Denver a day early and spend the night with Karlee’s family. The next day, my aunt Mary Sue would then drive us up to the campsite the next day. My mother scrutinized hours on end, frantically trying to familiarize me with the Denver Airport. Following signs is so difficult, right? The time seemed to fly by, and before I knew it, the plane landed on the runway.
It would frighten most people to go to a compleely foreign environment for a week without knowing anybody. To tell the truth, I was more nervous about going on my first plane ride, because fast things tend to give me an upset stomach. I couldn’t wait to finally meet other girls who lived the same lives I did. To be in a place where what made us so unique and different didn’t matter; our differences were celebrated, not judged or ignored. My experiences in Buffalo were the complete opposite. I was alienated and ostracized by my classmates, resulting in feelings of depression My mother never failed to be by my side, reminding me of the positive aspects of my personality.
Aunt Mary Sue and my cousins Jack and Karlee helped me carry out my luggage to the car. I hadn’t seen the Bobziens in a very long time and was very excited to spend the week with my cousin and other relatives As soon as the automatic doors opened, I could feel the hot Colorado sun and the dry heat immediately penetrate my skin. I knew I wasn’t in Buffalo anymore. I was in awe of the majestic mountains that took over the whole skyline. Without a cloud in sight, it was like the Rocky Mountains made Denver its own private paradise. After we dropped my bags off at their house, the Bobziens showed me around the Denver area. I still hadn’t gotten over how beautiful Colorado was when we were still at the airport!
Driving to Rye, Colorado the next day took three hours. It was still early in the afternoon and the buses picking up girls from the airport that had yet to arrive. Karlee and I wasted no time getting to know the campers who were already there and joined in on some ice breaker games in front of the mess hall area.
After the girls had arrived, we split into our respective age groups. As my group assembled into the wooden shelter, I looked around at the different faces and couldn’t believe that, after months of elated anticipation, I was finally here. For the first time in my life, I felt like I didn’t have to hold back any inhibitions. Our counselor introduced herself as Megan. From the very first meeting, we stopped bring merely girls from the cabin New Kiwanis to friends with an inseparable bond that would last a lifetime. Little did I know that introductory meeting was just the start of what was to become one of the most influential, memorable and amazing weeks in my life.
What made the first year at camp so much fun were the additional counselors the campsite provided for us. The counselors from the YMCA would run the additional activities during the week. Full of energy and enthusiasm, they had us laughing from the very first instant we met them that night at dinner and they taught us all sorts of silly dining hall rhymes To this day, my family will still make me pay for having my elbows on the table by chanting the song I taught them! By the end of the night, I had already decided I loved Colorado so much I wanted to live there. I had also had formed such an irreplaceable bond with two girls: we named ourselves “The Three Musketeers.” We spent the whole week glued at the hip, linking our arms and making countless inside jokes. Whether good or bad, spending just that one week with them continues to teach me more valuable lessons about the importance of friendship than I have learned from any other relationship.
Out of all the activities during the week, which included horseback riding, arts and crafts where we made flip flops, archery, dancing and a ropes course, my favorite ones had to be canoeing and the night campfires/games which involved the whole camp. We canoed almost every single day. It was my favorite activity because that was when I enjoyed hanging out with my new “musketeers” the most. First of all, the view of the mountains was breathtaking. Second, what could be better than playing, bonding and giggling with your friends in a canoe in the pond, while having splash wars with everybody else? At big bonfires during the night, all the girls would sit on logs, roast marshmallows and sing the classic camp songs. The warmth from the fire and calmness of the air made the whole experience come alive.
Karaoke night and a talk from Dr. Kappy, a local endocrinologist was scheduled for Thursday. Those two events were what made the whole week worth it for me. The endocrinologists who come every year are a great resource for the girls who were recently diagnosed or aren’t as knowledgeable about the features or effects of Turner's Syndrome as they could be. However, those talks are also beneficial for girls who have lived with the disorder for most of their lives as well, like me, because each Turner Girl lives with a different combination of features. Different features can be more noticeable in some than others. It was very interesting to learn about other girls' experiences and how they were personally affected by the disorder. Energy levels were high as girls eagerly bounced up and down in their seats raising their hands to ask questions. I spent the whole talk sitting with my friend Natalie. Until that night, I can honestly say she was the first friend outside of a few best friend relationships at home, that I felt instantly comfortable with. Within that hour, I knew I had found someone who I wanted to remain close to for the rest of my life.
Coming from a family that can never get enough of dancing, karaoke in the outside pavilion was the perfect way to end the night. I had never had so much fun dancing and being goofy.
I don’t remember many details about the last day. But what I do know is that I went for camp a timid individual who didn’t believe in myself, and left that experience as a confident and rejuvenated person who realized it was okay to be vulnerable. I was finally able to let people see underneath my “onion layers” and be myself. Those relationships helped me recognize the many positive attributes and gifts I have to offer the world.
The next summer I couldn’t wait to return. I knew this year was going to be even better than the next. Going into my junior year of high school and beginning my college search, I was more excited because camp was going to be held at Colorado State University. We were going to be staying in dorms! As soon as my Aunt Mary Sue, Karlee and I arrived on campus, I saw my cabin mates from the year before, Shelby and Jenny, and felt as if we had never even been apart. By the time camp had officially started and everyone had arrived from the airport, I felt like my insides were about to burst from laughing so hard! For the first time in my life, I had so much enthusiasm and energy and had a natural high from seeing all of my favorite friends from last year, people actually had to tell me to calm down.
Being in a dorm hall the second year was something I’ll always remember. We didn’t have a curfew either. An advantage that living in dorms rather than a cabin, was that you could socialize and become friends with girls not necessarily in your own group, which was how I met Stacey. The very first night I hung with my good friend from last year, Valerie, in her room. Stacey was Valerie’s roommate. Stacey, Val and I became inseparable that year. To this day, we still are the very best of friends. Even though Stacey lives in Florida, distance is not an obstacle in our relationship.
I was also very fortunate enough to become a mentor for a younger group of girls who were experiencing their first year at camp. Dubbing ourselves the “Sinister Sisters,” we did our best to look out for each other. We all had low self- confidence levels and came to camp for an escape from our everyday lives. We viewed Turner's Syndrome as a challenge. We became like a support group during the week and helped each other through our fears, doubts and gave encouragement. There was never a shortage of hugs!! I was amazed at how much strength they had to deal with their domestic lives and felt so proud of them for being courageous enough to come to camp, and trust that the experience would be positive. During that week, it was like we all became one, and still are to this day. We would have made Aristotle proud!
The week included many of the same activities from last year, such as horseback riding, karaoke night, swimming, arts and crafts. We also had cooking classes, roller bladed and white water rafted. Before I knew it, the week flew by and. I traveled back to Buffalo. When the dreaded day of saying goodbye finally arrived, there was not a dry eye that day, as everyone had to come to grips with being unable to see their good friends for another year.
I have attended the Turners Syndrome camp for four years in all now, and has continued to be held at the Colorado State University campus. Each year has continued to bring forth many more invaluable memories and new friends, including the Sinister Sisters, that I will never forget. During that one week during the year, is it easy to forget I even have Turner's Syndrome. Although the disorder is the reason we are brought together, it is our individuality and unique talents that are celebrated.
When I was younger, Turner's made me feel like an outsider. I felt that my classmates and peers unfairly judged me and didn’t give me a chance. My learning disability made me feel slow and unintelligent. As a result of those unhappy experiences, I found it hard to trust others and open myself up to new relationships. Turners Syndrome felt like a curse. That one week in Colorado helped me realize Turners was more like a blessing than a curse. If it wasn’t for the camp, I never would have met so many lifelong friends. As Turner Girls, we may be at risk for many physical complications and developmental disabilities. Yet we are some of the most outgoing, positive, caring and loving people you will ever meet. We don’t let Turner's hold us back or get in the way of what we are capable of .We have many gifts and talents to offer everyone around us, which is something never to be ashamed of.