Tic, Tic, Tic

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.

Advertisements

14 Comments

Filed under Christianity, Christmas, Family, motherhood, prayer, thoughts, Tourette Syndrome

14 responses to “Tic, Tic, Tic

  1. mcalmond

    Bless you and bless your daughter.

    I loved reading how you creatively redirected and helped your daughter come to enjoy her favorite service of the year. Thankyou.

    I pastored a church out west where one of our families had a daughter with this same syndrome.

    I remember her so clearly and her family. I also remember the struggles that they had with her at times. She was older then than your daughter. I remember that her tics, which could get quite overt at times, was something we as her church family also came to just accept, to flow with and overlook, for the most part. We sought to love her, accept her as she was, a very important part of our church family as well.

    Thank you for sharing this wonderful story. May you all have a wonderful and very merry Christmas.

    Blessings in Christ Jesus.

  2. WV Grammy

    You made me cry. Tell Rachel I love her.

    Grammy

  3. Jenn, you made me cry. Ever since your first post re: your dd’s Tourettes, I have been more mindful/attentive to it. I have thought of her often, when one of my kids does something dorky and I say, “What are you doing?” and they have no answer for me. I wonder if that is how she feels too often.

    My heart aches for your precious Rachel – and yet, just writing her name fills me with this sense of joy and hope and anticipation. All I can think is that Rachel was the beloved of Jacob – the bride he longed for and was willing to work an additional 7 yrs to have as his own. And I think, that must be EXACTLY how Father thinks of your Rachel. She must captivate His heart with her beauty. She must be that utterly precious to Him.

    Furthermore, Jacob’s Rachel fought sterility, something that would seem akin to Tourettes in her day and age, I must imagine. Yet, Jacob loved her all the more. How true too of Father’s heart for His dear Rachel.

    Lord, thank you for Rachel – Your Raizel, a Rose, surrounded by the thorn of Tourettes, which simply makes the rose’s beauty all the greater.

    Jenn, thanks for sharing re: Rachel. I’m blessed every time I read about her.

  4. Thanks for your honest sharing. God bless you all this Christmas. ๐Ÿ™‚

    Maria in the UK
    http://www.inhishands.co.uk

  5. Sorry to make everyone cry.

    JavaDawn, thanks for your comments. ๐Ÿ™‚

  6. My mom has nervous tics. She’s had them since she was a kid. Her brothers and sisters nicknamed her “Heda” (pronounced hee-da) and they called her tics “hedas.” They still call her Heda.

    When I was young she even had personalized license plates with “Heda” written on it. She used to get teased when she was young, but as she grew older they occurred less frequently. She still has them, but it’s no big deal.

    Thanks for sharing. Reading your post, I felt like I was right there with you. I’m not too much of a crier, but if I was I’d be ballin’ along with everyone else.

  7. It was a very touching post.Your creativity was great! I’m glad you were able to enjoy the rest of the service.

  8. Rindy

    Through my pastor’s blog, followed to “Arms Wide Open” blog, and to yours–and immediately saw this post. Meant to be… Tourette’s is a common word/topic in our house. My 3 boys all have Tourette’s (and throw in the often associated ADHD and OCD) and I finally got an “official” diagnosis in myself in Sept (always knew). Praise God that you know what it is and can laugh/be honest/accept it–it was not that way for me as a child. Thank God I figured it out for my boys! Yes, it can be challenging, but they are awesome guys and each has their strengths, their personalities, and their difficulties—no different than any other kid, teen, or adult. (although, it does sometimes make it interesting at the dinner table!). With all of us, we have experienced the whole range…

    Have a wonderfully merry Christmas! I look forward to reading more!

  9. Rindy, I think you and I should become friends. ๐Ÿ™‚ We are very much figuring this out as we go along. Lots of trial and error. There are good weeks and bad weeks, good days and bad days. So far, Rachel is our only one with TS, but we do find ourselves watching the boys closely. “Did he just say chewing that paper feels good to his mouth?” “Is he saying that because he heard Rachel say that or because he thinks that?” Our 4 year old is demonstrating some quirky behaviors that we’re casually making mental notes of.

    Have you seen that TSA video “I Have Tourette’s But Tourette’s Doesn’t Have Me”? We bought that last year, and our Rachel loved watching it. She doesn’t know anyone local and her age who has TS, so it was neat to watch her watching the video. Her face lit up because she realized she really isn’t alone; she’s not different from everyone; there are other children who know exactly how she feels.

  10. Hi – this is such a wonderful glimpse into your life and family. Thanks for telling it to us.

    My eldest has tics. We’ve never had an evaluation or diagnosis, but I’m pretty sure it is a mild form of Tourette’s.

    When he was little, he would pick up what seemed to me a “habit” in a matter of seconds. I couldn’t understand it at first. HOW could a “habit” become so compelling in seconds? Strange noises, twisting of the face, the mouth, the neck…

    It helped when I understood better.

    He is 14 now, and the tics really come out when he is stressed. I have read that adolescence can be a difficult time for this – so – I just expect it. He isn’t even aware that he is doing it until someone mentions it.

    Bless you, sweet Momma, and your darling Rachel, too! ๐Ÿ™‚

  11. Awesome! I’m trying this blogging “thing”. Stop by…rindy.wordpress.com

  12. Thank you for sharing your stories and youre heart. God bless you and your family. He has given you a precious gift for a purpose and he knows your heart. Thank again for sharing it with the rest of us.

  13. Thanks for sharing this — i used to feel that way as a child ( I have TS ), and my mother was every bit as fabulous as you are.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s