My daughter is 8 years old. She loves the color pink, anything that involves glitter, horses, and cheerleading. She has an obsession for tumbling and stunting, would practice every single day if she had a ride to the gym; she is loud, completely over the top and filled with drama, and every single day insists that her little sister is trying to destroy her life (which I must admit, at times, it does seem that way!).
She also has tourette's syndrome.
She started showing symptoms when she was only 3 years old, the same age that my younger daughter is now. She was diagnosed a few years later, and last year, when her tics became more severe, her neurologist prescribed medication.
Tourette's syndrome is a part of our life. It effects us every single day in some form or another.
Her tics range from loud throat clearing to arm and leg jerking. She rolls her neck and eyes, jumps up and down, and sucks in her breath in a way that sounds like she is suffocating. She has days when her medication is a God-send and very few tics escape through out the day.
..... then there are other days when it seems as though a horse tranquilizer would not be able to control them. They rush through her body in a series of unstoppable movements and noises, and will repeat every few minutes. These are the days that she cries. I don't know if it is because she is just so exhausted from not being able to sit still, or if it is the "emotional complications" that her doctor has tried to prepare us for. Anything will hurt her feelings, or nothing will hurt her feelings- either way, she cries.
School days can be particularly hard on her sometimes. She spends all day at school suppressing whatever tics try to escape her, so by the time she gets in the car at the end of the day, she explodes. It is like watching a water dam break after a massive flood. Every movement and jerk, every grunt and growl, rushes out of her little body like debris being hurled from a tornado. Simultaniously she talks a hundred miles a minute about every single detail of her day, almost like she doesn't even notice the release.
There is only one thing harder to watch- her panic attacks. If I am watching her when one is about to come on, I can sheild her from the entire population of the world that she insists is all staring at her at the same exact time. The color in her face becomes a bright red and her breathing becomes that of an old woman that has smoked since the age of 5. Her brain will choose one phrase and that is what she repeats until I can talk her through it. "I can't" is normally what she says. Sometimes it makes sense, other times it doesn't.
I have found out from other parents that have a child with TS, that "picking" is just a part of the symptoms. Her "picking" involves her belly button. She will pick and pick until her belly button is open and bleeding, and even then she will continue to pick. She will cry from the pain but she just can't seem to stop. Just in the past few days, she has started doing the same thing to her bottom lip. She scratches the inside of her lip over and over and over again... This has to be one of the worst things about tourette's syndrome because it is causing actual damage to her body, and there is next to nothing that will prevent it. I have recently been told about excersizes with clay or play-dough that will help her channel the "picking" to those things instead of her own body. I have started with the play-dough. All I can do is pray that it works.
Praying helps a lot. Praying turns over everything that she goes through every day to the One that can handle it all. He helps me see clearly that my daughter is amazing exactly the way that she is. She has days that she is happy, thrilled with life, and unaffected emotionally by tourette's syndrome. These are the days that we live for. These are the days that we look forward to, and the days that we concentrate on. But EVERY DAY, good or bad, we thank Jesus Christ for the amazing little family that He has given us.
She is absolutely one hundred percent in love with cheerleading. Not just regular cheerleading, with pom poms and football games, but competitive cheerleading. She started when she was only 4 years old, and to this day it is the only time that she seems to feel completely calm. Calm is a weird word to describe her at a time when she is pulling numerous flips, being thrown into the air "like a tiny little rocket" (her words, not mine), being caught by her team mates OR being dropped to the ground, and repeatedly practicing a 2 and a half minute routine as many times as possible in a 2 hour practice... but calm is what she is. There are no body jerks, no vocal tics, no panic attacks... There is just my little girl, doing something that she loves, without anything keeping her from doing it.
She has been a part of the same team for 4 seasons now, and there are people there that do not even know she has tourette's syndrome. None of her team mates know, and I think that the only thing that worries her while she is there is that one of them might find out and treat her differently. I am not sure if it is the right thing or not to let her ignore it for the few days a week that we are there. I have been told to teach her to be open with everyone in her life about it so that she doesn't feel like she has to hide from the people that love her, to teach her not to be ashamed of who she is...
But tourette's syndrome is not who she is.
My daughter is 8 years old. She loves the color pink, anything that involves glitter, horses, and cheerleading. She has an obsession for tumbling and stunting, would practice every single day if she had a ride to the gym; she is loud, completely over the top and filled with drama, and every single day insists that her little sister is trying to destroy her life (which I must admit, at times, it does seem that way!).
This blog is going to help me remember that.
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