I am a mama with Tourette syndrome. Yep, that is right. You may be looking at those words and be thinking to yourself, “So does this girl cuss or freak out on her spouse and kids all the time?”
Well, no. I do not have the cliché form of Tourette’s. There are people who do unfortunately suffer from that. I, however, have a muscular form of Tourette’s. It all started when I was 13 years old.
I love to sing. When my mama was alive, she would sing all the time. In church, in talent shows, etc. I am beyond grateful that I gained that talent from her. I followed in the same footsteps. I sang in school choirs, church choirs, talent shows, and mostly in front of my bedroom mirror. It would bring me much joy to hold a freshly printed music sheet and to belt out the chords like nobody’s business.
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Then one cold December afternoon, my singing days changed forever. I distinctly remember singing along with my peers in seventh grade when suddenly I had this weird feeling in my diaphragm. I clutched my music book so tightly against my stomach and quickly sat down so I would not fall onto the person in front of me.
Never had I experienced such a painful force in my life.
This went on for several weeks. I wanted to explain to my parents what was going on, but I just did not even know how to explain this situation myself. I was only 13, mind you. The truth came spilling out when my stepmom was driving me home from school witnessed such a horrific sight. I was spazzing out uncontrollably as if I was having a seizure. I felt like I had lost all control of my body.
My mom frantically yelled out to me, asking what was going on, and I completely lost it. I explained to her through uncontrollable sobbing that I was experiencing this weird, painful movement coming from the upper part of my stomach. When we got home, she proceeded to her phone and called my pediatrician immediately.
After two visits, blood samples, and confusing conversations later, a neurologist kindly told my mom and me that I had what was called Tourette syndrome, a vocal and muscular tic disorder. As she gave my mom all the forms and information, I just sat there in my chair. Quietly. I could not wrap my mind around this news. I began going to appointments periodically and took quite a lot of medication to keep the pain and tics under control.
I was told by my neurologist that my Tourette syndrome would not last into my adulthood. Here I am, 26 years old. Still having tics. Still having pain.
Unlike my 13-year-old self, my heart is full of hope. I was bullied so badly after I was diagnosed. People would make jokes, purposely point out my tics in class, and would just laugh. I just wanted to die at that point. I could not wrap my mind around why I was given such an unknown medical disorder and what was my purpose for it.
It took a long, long time to accept my disorder. My dad had to tell me over and over to accept this disorder as a part of me, or my lack of self-love and confidence was going to destroy me.
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I am so glad he pushed me to do that, or else you would not be reading these typed words. And I would not have my husband, and we would not have had our beautiful son.
The message I tell people is different is inspiring. Differences should be embraced and welcomed.
That is the clear message I want my sweet son to learn. When he sees someone who has a disability, I do not want him to give looks or avoid that person. I want him to treat them like a normal human being.
This world needs so much more awareness and acceptance when it comes to people, especially children with disabilities. My platform is to advocate for those who feel like they do not belong. That their life does not amount to anything. So yes, I am a mama with Tourette’s. A very proud one at that. I am going to keep using my voice to uplift others and to teach my son to love every person equally.