Time to tell our story

Tourette Syndrome.

I haven’t thought about those two words in quite a while. I mean it’s not that they don’t ever cross my mind but they have come to be an occasional reminder instead of the all-consuming fear they were for us 14 years ago.

Like many of you our first reaction to those two-words were misunderstood. We’d seen it played out on television or heard it as the butt of a joke in conversation but we didn’t know what it truly was to have Tourette Syndrome.

I was reminded of it last night as we watched a television show and all of the emotions and thoughts came flooding back. We talked about it with her for the first time in years. I thought it was time to share our story.

The definition of Tourette Syndrome is a familial neurological disorder of variable expression that is characterized by recurrent involuntary tics involving body movements (as eye blinks or grimaces) and vocalizations (as grunts or utterance), often has one or more associated conditions (as obsessive-compulsive disorder), is more common in males than females, and usually has an onset in childhood and often stabilizes or ameliorates in adulthood.

I felt as though a grown man had punched me in the gut.

We noticed as an infant that she began to have a few odd motor skill movements but we thought she would grow out of them. By the time she was two it became evident that something was wrong. I thought it was just habits forming. She would arch her back and extend her arms out. Open and close. Open and close. She began to have vocalizations that I didn’t understand and that she couldn’t control. Her eyes would do this weird thing where she looked off to the side.

We were sent to a neurologist and after visiting with us for just five minutes he knew what she was suffering from, Tourette Syndrome. It felt as though a grown man had punched me in the gut. You eat right, exercise, get the correct amount of sleep, read all the books on child-birth and the ‘what to expect in the first years’ and you are well convinced that your child is perfect in every way because you’ve done your part. You have created a perfect being.

To hear news that she was suffering from this disorder was as though someone pulled my heart right out of my chest. My first thoughts were “how was I going to protect her from the world?”

I became obsessed. Books, articles, videos, chat rooms, I had to know everything I could about this syndrome. The future was uncertain but it filled me with fear. The doctor told us that her symptoms and her tics would probably worsen once she hit puberty but hopefully level back out in her late teens early twenties. After about two weeks of breakdowns and so many tears every time I looked into her little face I decided that I had to get to work. This wasn’t going to beat us.

By the age of six we began Tai Chi classes to teach her how to regulate her emotions and stress. This helped a little.

She would come home from school and have a sort of tic outbreak. Not just one tic at a time but multiple tics. Causing her to become exhausted. I had learned that kids were noticing her tics and asking her about them so she was using all of her willpower to keep from doing them in school. I came up with a plan and talked with her second grade teacher about giving her the opportunity to leave class when stress or anxiety was too much. She needed to get out of the class room and be somewhere safe where she could tic.

She began to have back issue from the arching and the stiffness her body would take. Dad did a lot of rubbing her back and legs during these years.

The beginnings of puberty brought the obsessive compulsive disorder. Repeated behaviors of placing things in a specific order and the checking things over and over was a daily struggle. Though I am certain the mental rituals were the hardest on her.

Lots of late nights praying during this time.

Lots of moments I talked myself off the ledge.

Lots of fear.

Junior high came and went and the physical sings of this disorder had slowed down but the onset of high school caused it to rear its head again.

She was doing exceptionally well at realizing when she needed to tic and was able to suppress the need more often than not. We learned to talk, a lot. It was difficult. She has a strong personality, sort of guarded but getting her to open up was the key to knowing she didn’t have to suffer alone.

I wonder how many of us see children with this disorder and are frightened or don’t want to be bothered? I tell you our story in hopes that compassion may rule your heart for all social and neurological disorders that affects our kids.

For those moms out there in the middle of this fight. Don’t give up. Don’t lose heart for your dear one. Try everything at least once and may God give you the grace and strength to walk through this time of fear and uncertainty.

In just a few months she will graduate high school and go on to a University. She is %99 tic free.

I thank God for the beautiful soul that she has always had under the blanket of this disorder. She was and always will be perfect.


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