Here is an essay I wrote back in Grade 12 on living with one of my many conditions, Turner’s Syndrome. God has since given me the opportunity to have it published in the book Standing Tall With Turner’s Syndrome.
I came into the world on August 24th, 1992, at quarter after eight in the morning. By anyone’s standards, I was an ugly baby. Weighing a little over four pounds, I was a runt. My ears were misshapen and stuck out, extra folds of skin hung loosely from my neck, and one of my eyes was red and swollen shut. Many people would have considered me damaged goods that should have been discarded long ago. That’s because I had Turner’s Syndrome, a genetic condition caused by a missing x-chromosome. My parents received the devastating news when I was still in the womb. As they had never heard of TS before, they tried to gather as much information about it as they could. In one of the first magazine articles my parents read, a mother who aborted a baby with Turner’s Syndrome wrote,
“The tragedy started when our baby was conceived with a defect. A happy ending was never a possibility.”
But on that warm August day when my parents held me in their arms for the very first time, they saw a beautiful baby girl, a specialty item of infinite value.
My early years were much like any other young girl. I enjoyed looking at books, doing arts and crafts, playing with Barbies, singing along with Barney, and dressing up. Except for my regular visits to Children’s Hospital, I was just like everyone else. Every now and then a kid on the playground would ask, “What’s wrong with her eye?” My mom would give a brief explanation and we’d continue playing.
For the most part, young children are very accepting of differences, and when they’re curious about something, they’re not afraid to ask. Adults, on the other hand, not wanting to be rude, don’t ask questions and often make wrong assumptions. For example, one day while waiting outside the kindergarten room, my mom overheard some other parents discussing why I was so short. One mother said that it was because I had Fetal Alcohol Syndrome. Many times through the years, adults have also mistaken me for someone with Down’s Syndrome. Because I’m only 4’7, people often think I’m younger than I am. It’s very frustrating when adults speak to me in that condescending tone reserved for ten year olds. It’s hard to be taken seriously for a job interview when you can barely see over the counter. However, despite all the negatives, there are some advantages. Getting charged the child rate at the movie theatre is always a sweet deal.
Although I was well accepted in primary school, the rules changed when I entered the tween years. In order to fit in, one had to be pretty, slender, and model the latest fashions and trendiest brand names. Most people would agree that adolescence is a trying time, but when you have a physical disability it becomes that much harder. I’ve shed many tears over being ignored on the playground and excluded from social get-togethers. Eating lunch alone and being the last one picked for group projects has been a bitter pill to swallow.
Rejection hurts, but it has made me stronger. Being on the outside, I am able to see the world differently than others. I’ve developed empathy and compassion for the marginalized. Peer pressure doesn’t have a grip on me because I’ve learned to be confident in who I am. From a young age my parents taught me that God doesn’t make mistakes and that he loves me and accepts me exactly as I am. In the church community I’ve found a place to belong and have discovered who my true friends are. I’ve also had the opportunity to connect with other women and girls with TS through the local Turner’s Syndrome Chapter. This has allowed me to develop meaningful friendships with people who face the same obstacles I do.
Sometimes I wonder if my life would be better without Turner Syndrome. It would certainly be nice to be able to reach things out of the cupboard without having to get a stool. I would love it if my feet could touch the floor when I sit in a chair instead of dangling awkwardly in the air. And it would sure be a lot easier to learn to drive if I didn’t have to choose between reaching the pedals and seeing out the windshield. I would gladly be rid of these daily frustrations, and yet I realize that the challenges that have come from living with Turner’s Syndrome have shaped who I am as a person.
The other day I was walking along the beach when I stumbled across an oyster shell. Most people would probably walk past and take no notice of it; after all, oysters are such plain looking shells. But if someone takes the time to open it up and look inside, they may discover a pearl, a hidden treasure. Some people believe pearls to be the tears of the gods but in fact, pearls are formed when an irritant enters the shell and becomes refined over time. My life is like that pearl. Many people view those with disabilities like an ugly looking shell, not worthy of attention. As a result, they miss out on the beauty and joy that these people can bring to the world. I feel sadness when I think about that mother who aborted her child with TS. She missed out on the opportunity to grow as a person by not giving the pearl a chance to form.