My seven year-old daughter has Tourette Syndrome. Some days, the tics are just no big deal. Actually, most days, the tics are just no big deal. Some days, we laugh about some tics because, honestly, it can just seem ridiculous that her body would want to stretch her arms out in this perky cheerleader move at random moments. But other days, well . . . other days, she and I both end up in tears. Sunday evening was a little bit of both the latter.
We sat in the darkness of our church’s Christmas candlelight service listening to the harp music, waiting for the service to begin. Suddenly, Rachel leaned over and said, “I have to do a really loud tic. May I please go to the bathroom so I don’t bother anyone?” So, off she went to make this popping sound with her lips in the privacy of the bathroom.
Meanwhile, four year-old Silas fell asleep on my lap. So when several minutes went by and Rachel still had not returned, we sent eight year-old Lauren to quietly slip out and check on Rachel. A couple minutes later, Lauren returned without Rachel, who could not stop doing this loud tic and was very upset that she was going to miss her favorite church service of the year and, by the way, could we please come get her in time to take communion and hold a candle?
By this time, the service was beginning and the guitarist was playing beautiful Christmas music. Silas had begun to snore so loudly that people around us were smiling at us and some children were giggling. I decided that the disturbance of carrying him out the side door would be less than the disturbance of his snoring throughout the whole thing, so I got up to take him to the nursery. While I was out, I decided to check on Rachel.
I found her in the bathroom, listening to the loud echoes of her lip-popping, amazed at how loud it sounded in that hollow bathroom. She could not stop, and she could not hold it in during the whole service. There she was, beautiful in her silver Christmas dress, knocking her fists together two times, thrusting her arms in the air in the perky cheerleader move, popping her lips, rolling her eyes, and stretching her mouth. Over and over and over, she did this little pattern of tics. She was getting frustrated and was beginning to cry. “This is my favorite church service all year long. You and Daddy promised I could hold my own candle this year. I don’t want to miss it, but I can’t make this noise in there. We’re supposed to be quiet. . . . . Why do I have to have dumb old Tourette Syndrome anyway?” She was about to cry. I was about to cry. I had to think quickly.
“Rachel, can you do another tic? A quieter tic that will make your mouth feel just as good?” And I began to demonstrate alternate mouth tics. I do not have Tourette Syndrome, so I was blindly guessing. I almost-silently clicked my tonge to the roof of my mouth. I silently opened and closed my lips. I moved my tongue from side to side. I puckered my mouth and quietly blew out little puffs of air. She began to giggle.
“Momma, that’s not even one of my tics. It never has been. I can’t do that!” She continued to try different mouth tics, listening for a quiet one. Pop . . . click . . . kiss . . . pop . . . toc . . . click . . . purp . . . kiss. Finally, she did it. She very quietly touched her tongue to the roof of her mouth then flicked her tongue across her teeth and out between her lips. She barely made a sound.
“I have it! That’s it! Can you hear that? That won’t bother anyone!!” She beamed up at me, demonstrating the substitute tic. “That feels good. It will work. Let’s go!” And we both giggled as we left the bathroom, knowing we had just spent five minutes making all sorts of goofy noises and faces in the bathroom. Tourette Syndrome can be so silly sometimes.
After returning to the service and realizing Daddy had gum and chewing gum would solve the tic problem, Rachel was overjoyed. So I sat in the darkened sanctuary, listened to the peaceful music, and for a moment tears silently rolled down my cheeks as I watched my beautiful little girl knock her fists together, thrust her arms into the air, chew her gum, flick her tongue out, roll her eyes, and stretch her face all the while worshiping her Savior. Already, her mind was off her tics, off herself, and she was worshiping the Jesus she loves.