Tourette

Right after Emily turned 8, she started doing this weird thing with her eyes like she couldn't see clearly. We thought it was alarming, so we took her to our eye doctor and he tested her eyes and they were perfectly fine and he told us not to worry. But, then she started to move her arms back and forth in a certain way over and over. Then she started kicking her legs up and down in a certain way over and over, then she switched and started snapping over and over. These movements were happening constantly and changing every two weeks. I knew something was wrong and thought it might be Tourette Syndrome. I had remembered what Tourette was from learning about it and also because I had had a student with Tourette. Kenny wasn't convinced so we just kept watching her.

After a year of changing from one tic to another every couple weeks, Kenny was finally convinced that's what it was. We took Em up to a doctor at Primary Children's in 2014 where they officially diagnosed her with tourette syndrome. There is no cure for it and medication that "might" help with some tics would literally make her a walking zombie, so that is totally not worth it. We were now faced with this new challenge for the rest of our lives. I think anytime something like this happens, we all go through the phases of grief. At first I felt really guilty like somehow this was Kenny and my fault because there is a hereditary component to Tourette. What had we done to give Emily this? No one in either of our families had ever had Tourette, so how could this be? I then moved to being ashamed. I knew I shouldn't feel this way, but I was still ashamed that I had a daughter with Tourette and wanted to shield her from the world. I was also very apologetic about it at first. When she did something, I wanted to apologize to others for it, even though I knew she couldn't control it or stop it.

Tourette Syndrome causes involuntary movements or "tics". These tics can be motor or verbal tics. Most people with Tourette have both. Emily has both.

After a few months of diagnosis, I moved from shock, guilt, shame to empowered. I have a wonderful daughter who is so smart and extremely talented in so many areas. She has been diagnosed with a huge challenge in her life. She cannot control her tics or "stop" them. If she "tries really hard" she still can't stop them. Now that I fully understand all that, I can help educate others about Tourette. If they look at her weird, so be it. She is doing nothing wrong, even if it feels wrong.

The crazy thing about Tourette is, you never know what you are going to get with Tourette. Her tics might be mild one week, then awful and hurtful the next week. For the first two years, her tics were just motor tics. The past year though, her tics have been vocal and more painful. She had one tic where she would wrap chunks of hair around her finger then pull out her hair. I felt so helpless that I couldn't do anything to help, besides just be there for her. Then she started barking like a dog. Kids thought this one was cool so they would try to bark like her. That is hurtful too, because imitating her tics makes her feel self conscious about it and like they are making fun.

Kids at church thought she was being irreverent. She wasn't; she was just a girl living with Tourette. After I went and talked to her class it seemed to help the girls understand it more. That's the key to Tourette--education. The more people know about Tourette, the more understanding and loving they are.  Her newest tic is swearing, which is what Hollywood thinks that people with Tourette do all day everyday. It's not. But it sure is nice when we are around people who understand, and so when they hear Emily say sh*t over and over again, they just ignore it. Even though I don't like hearing that word either, I understand that she's not trying to offend, or be offensive, or naughty. She just simply CANNOT control it!

So what does the future hold for my Emily girl? I don't know. What I do know is that I have a sweet daughter who is smart, talented, loving, so obedient, and happens to have Tourette. I am so blessed to be her mom! I love her beyond measure! Whatever happens, she will always have her parents in her corner as her number one champions! :-)