It matters to me

As some of you might know from reading my BabyCenter blog, I've been dealing off and on with my son's tics. He has a combo of motor and vocal tics that have lasted over a year, hence his Tourettes diagnosis. Most times you would never know he has tics, and other times, they're more obvious.

I vacilate between being open about his Tourettes and keeping my mouth shut. After all, his issues are his, not mine. But at the same time, by keeping it hidden, what good does that do? Don't most "disabilities" only get more accepted with an open mind, love and support?

What I've found the most frustrating about Stink's situation is that just when he seems to be doing well, he gets a bad bout of eye rolls or coughing tics. Some of it is food related. We're having him tested. Some of it is excitement based. But alot of it is just the nature of the tic.

If you're interested in reading more about Tourettes, you can find it here.

I can promise you this: It is not as bad as the media makes it out to be. And more people have it than are even diagnosed with it.

The main thing I'm trying to remember is to not get stuck in the "let's fix this" mode. Tourettes is a neurological disability in which certain wires get crossed. Tics change in nature from eye rolls to shoulder shrugs to blinks. It doesn't mean a person is going to bark and curse like our lovely media loves to portray. It simply means that sometimes they get tics.

Medication helps a lot when a child is older. For now, we're using homeopathic techniques. And we're lucky, because tics or not, Stink is about the most popular kid on the block. They don't affect him at all. At some point, if the tics continue, kids will ask. I'm thinking of getting a tee shirt made for him, "I have Tourettes, What's Your Excuse?" but again, that might be in bad taste. The verdict is still out.

Sometimes, like the past few weeks when his tics were not so great, I feel an overwhelming sense of sorrow. It is hard to see his outside not match his inside. I worry about his future. This boy is so open and sweet and bright. I would DIE if someone made fun of him for something he couldn't control.

But don't kids get made fun of regardless? Or am I just making myself feel better? Maybe, but what choice do I have?

I'm trying to remind myself that a child with Tourettes with strong parents and confidence is heads and tails over a child without Tourettes but no self esteem. And sure, I can be upset at times. Who wouldn't be? But my child is perfect just because he is here. He is not a Tourettes kid first. He is a kid who is the light of my life, smart, funny, sensitive, talented, adorable. Oh, and he has Tourettes.

Tonight, he had his best friend from school come over. As always, I never see such joy on Stink's face as when he's with this child. There's no such thing as tics with these two kids. It's all about muddy mudpits, cars, Scooby stories, begging for pizza and laughter.

I'd love to hear from any of you who are experiencing the highs and lows of raising a child with an unexpected diagnosis. Because really, no one has everything.

And, as Meno once said, "No one gets out of here alive."

More of my writing can be found on Goodhousekeeping
& Babycenter. I write under the name Andrea Frazer. Drop me a note! I’d love it! Or don’t.