Confessions of TS mom

I can't complain really. I mean in the grand scheme of things it could be worse - a lot worse. I KNOW this. Down to my toes I know this, but as his mom...it's killing me.

He now says that his hearing in one of his ears is going down sometimes. It's the reason he quit wearing his aids and we fight about him doing so every morning. He blamed his aids for this happening. I knew it was his sniffing and snorting tics. His rapid fire and forceful succession of them, would begin to mess with his ears. I don't know if this will have any long term affects on his already slowly diminishing hearing or not. I can't even decide whether to call his audiologist or not.

He's not beating himself, much like he used to. Slamming his chest with a closed fist until it was purple nor is he punching his head like some horrid wrestler you might see on T.V. He's not crying to hold back the coprolalia, screaming because he says it hurts. So, I can't complain....exactly.

When he was about 4 or so, his Tourette Syndrome was so severe that no one knew if he'd be able to truly function in daily life. Then he was put on Orap and Requip and although he was ultimately removed from them, it's like someone flipped a switch! His tics dropped so dramatically and I was able to see his beautiful blue eyes for the first time in years. And this wonderful perk lasted all these years and I've felt blessed to see his smiling eyes.

So, as the last several months have agonizingly crept by and I've watched OCD slowly creep back into his life, his meltdowns become more and more aggressive, and slowly, but devastatingly, watched his tics began to take control of his life once again, my heart has shattered into a million pieces.

He's unable to feed himself a majority of the time now, he's ticcing too much. He was unable to go to the bathroom at the doctor's office and dang near wet himself, because he had to finish touching the door handle the appropriate amount of times and in the appropriate way, he needs help in the bathroom again because he's unable to stop moving long enough to do it the proper way....I could go on, but I won't.

It's this level of ticcing and OCD and everything else that breaks me. I would take it all from him in a heart beat if I could. Nevermind my pain, frustration or anxiety, I do it just to give him some peace! It's awful being so helpless.

I've called his neuro, whom we've not seen in months and months and the soonest we could get in was the end of this month. Again, I KNOW the wait time could be a lot worse, but it's the helpless waiting and watching that is killing me. I have to continually remind myself, that in his eyes, he knows no different way of life. That while yes, it's all frustrating at one point, this is how he lives and while I'm dying at every little thing, he's such a hero that he doesn't even bat an eye, he even comforts me when he might see me upset (though he never knows why)!

I can only hope to have such bravery and nobility in single moment, not every moment of every day. In this way I KNOW that my children were a gift given to me, to teach me humility, sacrifice, patience, understanding/compassion and above all else unabashed, unbiased acceptance. I hope that I will grow to be worthy of their lessons and that they can understand while in the interim my heart breaks for them daily.