I Found an Outlet in Theater and Choir - by Emily Rose

Hi my Name is Emily Rose and I'm 19 years old. I was diagnosed with mosaic Turner syndrome (TS) at six weeks old. Growing up, this caused me to develop many learning difficulties and several physical Issues as well. I had to grow up with lots of challenges and, sadly, I was bullied a lot as a kid.  Basically, I developed ADHD, nonverbal learning disorder (NVLD), and sensory processing disorder. 

I was a hyperactive kid and had issues with learning and I was off the wall like crazy. Other kids thought I was weird, and they picked on me until my junior year of high school. This made me feel weird and secluded growing up. I had a few very good friends I met in my resource classes and I grew up with them. So, I didn't fit in very well.

I found an outlet for when I felt alone or felt like I didn't fit in.  When I was 10 years old, I discovered the world of being a theater kid. I joined the choir for the first time and I instantly fell in love with it. I loved the way we all sounded when we all sang together. I discovered I loved to sing and dance with my friends, and on stage, I was a whole new person!  It felt so great. Finally, I didn't feel as different. I was in the choir all the way through high school and even performed at graduation.

While I was in lots of shows, the biggest one was Grease and it was amazing. The costumes were a pain due to my size. My favorite musicals are Wicked, Book or Mormon, Footloose, Mean Girls, and Heathers and so many more!  

In 2021, I discovered TS support group and joined at 15 or 16 years old.  I met all of you guys and finally, finally met people I could relate to! It felt amazing! I love the fact that I can come to you all about ANY problem I have or with any questions about Turner syndrome. I finally had a place I could go to if I needed support.

I've met friends I joke with and relate to and, on a more personal level, none of my friends from school could relate to my TS issues or complaints. They would all act confused or pity me, and I hate being pitied. I can't believe there are so many of us with TS.  When I was really little, I used to think that I was the only one. I even met my lovely partner who also has TS and we love to hang out, stay up all night on the phone, and goof off. I love the way I can relate her and not have to explain all of my "issues" because she already knows all about it!  We even both have blood disorders. I can complain to her about female issues related to TS and she understands. It seriously feels so good to be understood on this type of level - I'm not alone anymore! I used to always wish I was "normal" like my friends or siblings I have finally come to terms with this condition.

 I'm very lucky my mom, who as always been my biggest supporter, always made sure I knew about TS and always made sure I understood it the best a little kid could.

I feel like I was born to be a mom - and sometimes things don't go as we expect. I had my ovaries removed when I was very little due to them being (pre)cancerous. Unfortunately, due to many other reasons, like most of us I won’t be able to have my own biological kiddos. This used to break my heart. My mom always gave me baby dolls growing up.  I had so many “adopted” little babies when  playing house with my sisters all the time.

This hurts me still, but I know someday I will change a kiddos life and adopt, and I want to be the best mom I can be and love and sing to my kids. I hope to be either a child life specialist or a music therapist, and help kids in the hospital feel less scared or alone. Thank you for being here and reading my story. I hope to spread awareness as much as possible. Happy Turner Syndrome Awareness Month.