I was born a month early, with puffy hands and feet as well as a hole in my heart. My mom had a feeling, call it intuition, that there was something more going on with me. She brought up her worries to my pediatrician, and asked them to order a karyotype. A mother’s intuition is always right. I was diagnosed with Turner Syndrome at the age of four months. I will always be thankful to her for this early diagnosis. Her instincts were due to the fact that she was majoring in Genetics in college before switching to Dietetics. I don’t think that I would have been diagnosed this early if it were not for that.
When I was about a year old I had open heart surgery to mend a hole in my heart. Because of this, I didn’t learn how to walk until I was two years old. I started taking growth hormone injections when I was two as well, and stopped taking them when I was 14. When I was three years old my parents divorced. I was too young to remember anything about it. My understanding is that my mom divorced my dad because he stopped taking his medication for his Bipolar Disorder. This led to him being violent and controlling toward both my mom and I (I actually started saying curse words because I picked it up from him, according to my mom). Till this day the relationship between my dad and I has been rocky, for reasons I will not say here due to privacy. I have learned to let the hurtful things that he has said and done not bother me, because life is too precious to spend dwelling on them. I also try to remember the things that he has done for me that made me joyful. I keep in mind that every human being has the right to be treated with respect, no matter what their fault or burden may be. These are the reasons why I still keep in contact with him. Though this does not mean that I am not strong and stand up to him when needed. Otherwise he will not know what I expect of him.
I went to a performing arts school from grades 4-12. In order to get in to the school, you had to audition for every type of arts concentration (music, art, dance, drama, creative writing). As fate would have it, the only audition I passed was for Instrumental Music. So I played horn in the school’s beginner band for about a year, and then switched to flute because having braces made horn very difficult to play. Now my flute is my baby. I can not say in words how wonderful playing my flute is. This was the beginning of my love and fascination for music, as well as an appreciation for the arts. To this day I dabble in composing music and write poetry when possible. Self expression, I believe, is like medicine for the human psyche. When I was eleven or so I had a stent put in to my aorta because it was constricted. I was one of the first five to have this procedure done at the medical center I went to (and still go to today). I had gained so much energy after that! When I was five I used to play soccer, but because of my heart issues I only had the energy to last a quarter. After the stent I could run without becoming out of breath! It was also around the same time I was diagnosed with scoliosis. It was a mild lumbar curve (about twenty-five degrees). My orthopedist at the time put me in a back brace for years, but the curve slowly kept on getting worse and worse. At this point the curvature was sixty-two degrees. My mom and I got a second opinion, who happened to be recommended by a speaker at a TSSUS convention. I was sixteen when we saw him, and that summer I had back surgery to correct the curvature. Now I don’t have the back pain I had before. When I was twelve years old a lot of things happened. That year I finally got hearing aids after my audiologist recommended me to wear them. My parents and I always knew I had mild to moderate hearing loss, but the audiologist I had then said that I didn’t need hearing aids. My mom also became concerned with the discrepancy in my grades. There was a gap between my not-so-good math grades and the rest of my grades, which were pretty decent. After having a neuropsychological evaluation, I was diagnosed with Nonverbal Learning Disorder (NLD). I can say that being involved in music helped me get through the barriers of NLD. I learned how to adapt in social situations by being in a large group (band), playing a musical instrument helped with my visual-spatial difficulties, and performing music is one of the few activities that stimulate both sides of the brain. After graduating from high school (top 25% of the class), I knew I wanted to continue being involved in music in some way, whether it was my career or not. Music will always be a part of my life.
In high school, I had an eye exam. My mom wanted me to get one to make sure everything was OK before sending me off to college. It turned out that I had mild astigmatism and needed glasses. My college years had it ups and downs. When I first started I wasn’t exactly sure what I wanted to major in. I was debating between majoring in Biology, English, Education, or Music. Every Freshman had to take a Freshman Seminar class the first semester of their Freshman year, and they get to choose their top three selections of what they want to take from a list of classes. My Freshman Seminar class ended up being a World Music class called East Meets West in Art Music. So, fate again? I enjoyed the class and the professor very much, so I started to think about majoring in Music. At this point my English professor for my Freshman English class told me that I should think about being an English major. I contemplated both majors, flipping between the pros and cons of each one in my mind. In the end, after playing in the Flute Choir and Symphonic Band, I knew that Music is the area that I wanted to major in. It fit. I also love children, always have and always will. So I decided to major in Music Education. Well, unfortunately I wasn’t able to do that because of time and money. Because I declared my major late (end of first semester Sophomore year) it would have taken me six years to complete the degree. My parents did not have the money for that. So I switched to getting a B.A. in Music. After five years I was able to graduate with the degree with a somewhat decent GPA. My next goal is to go to get a Masters in Music Education (Music Therapy is my fall-back degree in case Music Education doesn’t work out). Another consideration would be getting a teaching lisence.
One thing that is a struggle for me right now is having children. I am one of the few TS women out there who had spontaneous puberty. My endocrinologist at the time didn’t believe I was developing, and that my breast buds were just “fatty lumps”. Because I developed naturally, I thought in back of my mind that I COULD have a child on my own. I could physically. But I also knew the risks, especially with my preexisting heart condition. However, I recently was told that I have the beginning stages of ovarian failure. It was one of those phone calls that made you hold your breath until the last syllable of information was uttered. Oddly enough, this news seemed so finalized that I was somehow accepted it.
I would love to have a child, and witness their joy, curiosity, and innocence. It’s hard knowing that I could, but that I should not. It’s hard balancing desire and common sense. But I remind myself of adoption, and other ways of becoming a parent.
This is my message to those with TS and those who have a daughter with TS: TS doesn’t mean “failure”. TS doesn’t mean “not able to”. There will be many obstacles throughout your life/your daughter’s life. How it is handled is success. Be patient. Be understanding. Remember that even a small victory is still a victory. If there is a vision in your soul of how you want life to be, follow it. If there is a vision in your daughter’s soul of how they want their life to be, guide them to follow it in the best way possible.
I also want to add that I do not know what my life would be like without the support from my incredible friends, my incredible family, and my incredible TS family (yes, you ARE incredible). With love from others, and love within yourself, there is so much you can accomplish!