I am a unique butterfly. I have Turner Syndrome with multiple diagnosis. I have also been clinically diagnosed with Tourette's Syndrome, Pseudo Seizures, Severe Clinical Depression, OCD and Generalized Anxiety Disorder! Just to add fun to mix, I also have Nonverbal Learning Disability which affects 99% of girls and women with TS to some degree or another. NLD causes me to have intense social anxiety and have a hard time navigating social settings. A part of NLD I had when I was younger, but not now is the inability to interpret social cues. Having NLD has impacted my ability to drive because I have visual-spatial issues and issues with depth perception. Intellectually, like most butterflies I have normal to above average intelligence and am verbally gifted.
I was born in 1989 in Columbus, Ohio, weighing 5 lbs. and 15 ounces. My doctors and folks knew something was very different about me early on. My parents were told I’d never walk or talk, and my prognosis was not good. If they said there was a 10% chance of something bad happening, it’d happen to me. I could not keep any food down. Before I was one year old, I had two major surgeries. The first one was a Nissen surgery where they opened me up and twisted my esophagus to prevent me from getting sick. After that surgery, I went back into the OR for another surgery to insert a feeding tube. I was on the feeding tube long enough that it affected my development substantially. I was delayed in learning to walk and talk. I learned to walk using a walker.
Fast forward to 7 years later- 1996. I was not growing or gaining weight. My medical team discussed reinserting my feeding tube. My amazing mother was adamant about that not happening. She also knew the doctors where stumped, and something told her they were on the wrong track. She knew my well-being depended on her finding the answers, not my medical team. She started researching multiple medical conditions. To make a long story short, when she stumbled upon Turner Syndrome, she just knew.
At first, my doctors were adamant that I did not have Turner Syndrome. She wouldn't hear it and basically told them "You are going to run a karyotype." A karyotype is a simple blood test that looks at chromosomes. They did that and it came back positive. I have classic Turner Syndrome or XO type. My second X chromosome is completely absent, and I only had a 2% chance of being born alive. Turner Syndrome explained my feeding issues as an infant, my frequent ear infections and sinus infections, my social problems, and so much more. Today, TS does not affect me all the much except socially, emotionally, and cognitively in Math. Physically, Turner Syndrome has caused me to have progressive hearing loss, a horseshoe kidney (with no issues), some minor heart defects that need annual monitoring but not a real concern at this present time, and hypothyroidism which is well controlled with medicine. I also routinely have high liver enzymes but again no issues there and it is not much of a concern.
The day I was diagnosed with Turner Syndrome, my mom called my Pastor and asked if he could come over that night so they could all pray for me. They prayed a long time for me. I don't remember this or seeing them actively praying for me. I just know it happened. My oldest brother was told to distract me and play with me so I wouldn't know anything (they wanted to wait until after the holidays as I was diagnosed the week before Thanksgiving and was only 7). In retrospect, I can say in many ways the prayers they prayed that night were answered. When I had all the testing done to see what parts of TS I had and didn't have, it turned out to affect my body at the lower end of the spectrum and still does today. I can accept parts of TS that can be extremally hard for us to accept. When Mom sat me down and told me I said, "It's going to be okay, We've got this," or something along that line. I asked Jesus in my heart a days after my mom sat down and told me. I knew the scope of what the next few months and years would look like with medical test, specialist, night shots to help me grow, and surgeries. I knew I couldn't do it without a relationship with God. Today, I can still say that I cannot live with all these diagnosis without a relationship with God.
In 7th grade, I noticed very subtle jerks in my head. In a foreboding sort of way, I told my mother I thought I had Tourette's. At the end of 7th grade, my brother Matthew graduated from college. He got engaged and a few weeks later, she broke the engagement. She blamed me. That summer I became depressed and very suicidal. In the beginning of 8th grade, the tics really started, but they were so much than that- they were also seizures. Very long story short, several tests were done locally to see what was going on with no answers. I was transferred to Cincinnati Children's for neurology where I was diagnosed with Tourette's syndrome and Pseudo Seizures. My pediatrician called the best child/adolescent psychiatrist and got me in as an emergency. He diagnosed me with Severe Clinical Depression and Generalized Anxiety Disorder.
All my diagnosis is a lot to deal with. Luckily, the Tourette's and Pseudo Seizures are pretty under control. I still have them when I am tired, depressed, anxious, or in a lot of pain. I deal with depression and anxiety still today, but I am much stronger than I use to be.
I would not take any of this away from me. It also doesn't define me! I graduated from college with honors in a degree of Early Childhood Development and Education. I learned in college that a diagnosis truly means nothing! I am so much more and THAT is what I want you to know. I am a daughter, a little Sister, and an aunt to a precious little boy. I am a traveler. I have been to 38 states! I travel by myself often. I fly more often by myself than with family. I love to read, go to church, being funny, writing, and watching shows that make me laugh! I have done everything no one but my parents said I could do!
I want to make a difference in children's lives. I want to make a difference in the lives of their families. I want to work with all kinds of children - especially with children who have medical challenges and disabilities. I want their parents to hear my story and let it give them hope for their bundle of joy! The ideal job for me would be working an inclusive preschool classroom with children with disabilities and/or medical challenges learn alongside their typically developing peers. I want to tell their parents my story and tell them what I wish my parents were told.
I have days when it is hard. It is hard to feel different. It feels frustrating and you wish things would just work for you like you see it does for everyone else. It is so easy to compare yourself to others and feel yourself fall way short. This journey is NOT easy, but I can honestly say I am thankful for the journey. I wouldn't take anything way. If my story can just give one person hope; if my story gets just one person to choose life if they are suicidal like I once was for the longest time, I know I have done my part, and know my journey isn't in vain. I will continue to choose life every day and encourage others to do the same. I am thankful I chose life so I can take other people by the hand and help them choose it for themselves.
Today, I am 34, and currently work in food service which has worked out well because I have been able to learn skills that don't come naturally to me because of Nonverbal Learning Disabilities such as interacting with people and seeing the big picture. It will help me go back into childcare when I am ready.
My parents raised me like they would if their daughter didn't have a medical condition. They were realistic but they also raised the bar high. In a sense their attitude was "You WILL learn how to talk to people, you WILL learn how to travel on your own, you WILL learn how take care of yourself and advocate for yourself, you WILL work independently without outside help." They never held me back from doing what I want to do- like going to college and graduating from college, flying the country myself, and giving me the tools to be a functional adult by teaching me basic fiscal responsibility and literacy, learning how to interact with people and so much more.
What about you? What sets you apart and makes you different? My biggest advice for anyone is to find your support system... for me that has always been my immediate family and every church I've gone to. Learn about yourself and what your skill sets are... learn your weakness. Learn how to make your weaknesses work for you and not against you. Be true to who you are and don't be afraid to advocate for yourself. Choose to go beyond the labels that people have put on you. You are so much more than that. Don't let the nay-sayers win!!!!!! You've got this!
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