Jamie Grace: Tourette Syndrome

Jamie 6

Gymnastics. Friends. Sleepovers. Singing.

Tourette.

I was 9 years old when my arms and legs started to twitch. Initially my parents and I all thought I had just picked up on some habits or something but eventually I realized I couldn’t stop it. My arms and legs and eventually my head and eyes would move and tic and blink and wince without my knowledge and not matter how hard I tried I couldn’t hold still. Eventually the little tics started to get worse and everyday tasks became difficult… walking, talking, focusing, even holding something in my hands was a problem because I would drop and often break almost everything.

Jamie 6A few months into the craziness my parents took me to the doctor. My doctor was concerned but didn’t have a definite answer so she referred me to a specialist who referred me to a neurologist. I spent the next two years in and out of that neurologist’s office. Sleep tests, MRIs, X-rays, blood tests, interviews, medicines, you name it. They tried over and over to diagnose me but the neurologist couldn’t seem to find what was wrong.

One day, when I was 11, my mom marched my sister and I to my appointment with a stack of papers in her hand. She had been googling all night long and had printed out pages and pages on tic disorders, more specifically, Tourette Syndrome. She was upset, confused, stressed out, frustrated, but more importantly, she became my hero. I watched my mom, the singer, the preacher, become a fighter. My mom told my neurologist what I had and after doing her own research, she confirmed it.

I was 11 when I heard “Tourette Syndrome, OCD, Anxiety and ADHD” and I wanted to crawl into a hole. Immediately. I hated the idea of a list of “disabilities” and I wanted to be better. Fast. But unfortunately there wasn’t a cure for what I had been given and in that moment, my life changed. I was no longer going to be the fun peppy Jamie Grace that everyone knew, I was already becoming quite the story in my group of friends and I really didn’t feel like trying to earn their respect. I twitched and ticced all of the time. I was weird, a loner and I didn’t fit in so what was the use in trying anymore?

This begin the ending of gymnastics. Friends. Sleepovers. Singing.

I became a girl who didn’t fit in, who barely had friends, who was bullied and mocked. But I also became a girl who thought that all of her dreams were forever crushed because of one speed bump. I became a girl whose thoughts about herself were simply echoes of what everyone else said about her. I lost my confidence, my hope, my smile and I was really close to losing my Faith.

“Weeping may endure for the night, but joy comes in the morning” is the sweet, sweet sound of Psalms 30:5 and the lyrics to one of my favorite church songs. Not only did that song give me strength and courage in my lowest moments but that song gave me life every single day. My mom and dad and big sister Morgan lived that verse out in front of me like nobody’s business. They lived a life that showed that yes, we will cry, but we will always have Jesus.

My mom painted the hallway of our house blue because she knew I barely saw the sky. My dad stayed in my room dancing like an old sax player from the 50s to instrumental jazz to help me laugh and smile when my body wouldn’t let me sleep. Morgan would give bullies “the eye” and help me on guitar or show me something random to keep me focused on the positive things in my life.

I cried a lot. Honestly, I still cry sometimes. Life was hard and it’s not perfect now. But I know, for a fact, that no matter how this life turns out and no matter what this life brings, I serve a God who will never stop bringing me joy. Even if I have to cry sometimes.

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