» He’s Not Broken

He’s Not Broken

Me and my inspiration

Hello everyone. My name is Michelle and I’m addicted to trying to fix my son.

It’s been nearly 6 years since my son’s diagnosis with Tourette’s Syndrome. Five of those years I spent moving through a series of emotions that I now realize are very much like the 12 step program that groups like AA rely on. I realize now that I had an addiction that took me years to overcome.

Even before Jacob was diagnosed with TS, thanks to the powerful and sometimes destructive voice of the internet, I knew. I knew that Jacob was behaving in a way that fit the criteria for Tourette’s. I knew but I wouldn’t let myself believe it. I figured if I believed it then I was sealing his fate and condemning him to a life of never fitting in and being bullied, a life plagued with low self-esteem. I spent hours online searching and searching for something that would justify my denial. I was exhausted emotionally and mentally from spending so much energy on fixing Jacob.

When Jacob was diagnosed I went into immediate panic mode. Did I give this to him? Was it my fault? What did I do wrong? I hated myself for the future I had given him. With this thoughts reeling through my mind, I began to slowly disappear into my son’s TS, and it consumed my every waking, and sometimes sleeping, moment. I searched for answers, cures, solutions – anything to take this away from him. Anything to fix him.

We tried vitamin therapy and behavior management. But nothing changed. Jacob still made funny noises. He still moved his body in odd ways. He still fit the criteria for Tourettes.

I became furious. Furious at myself. Furious at God. Furious at parents who had kids who didn’t have Tourette’s. My anxiety fed Jacob’s anxiety and many days were spent in a very dark place within myself. My anger and resentment were stealing my life with my son. I was mad at the world and yet, still my son ticced.

I spent many nights bargaining with God. If you take this away I will take whatever you give me. Make me tic. Make me suffer, but not my son. I’d wake up hopeful, until I heard the snorting and I would crumble inside. Another bargain denied. I begged for a miracle, and yet still my son ticced.

I began to withdraw from life. I was so sad for my son. But I was also sad for me, for what I had lost. I had the child I always dreamed of, but he wasn’t the child I had expected. And now, I lamented the son I would never have. This made me even more depressed because certainly I was an awful mother for feeling like this. I didn’t love my son any less at all, I just wasn’t prepared for this particular child. I cried all the time. And yet still my son ticced.

Then something started to happen. I began to meet other people with similar kids. I also met adults, successful adults with Tourette’s. I began to accept things as they were and trust that this was the life I was meant to have. I could continue to live in misery and defeat, or I could embrace this and make a difference. I started really looking at Jacob and I noticed the darnedest thing. His Tourette’s didn’t bother him. It didn’t stop him from being a “normal” kid. So why did it bother me? Once I started paying attention to how life really was for Jacob and not how I perceived it to be, once I started accepting things the way they really were, my life changed and so did I.

I finally realized something that took me 5 years to learn – my son is not broken.

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Tags: 12 step program, AA, acceptance, anger, bargaining, denial, frustration, Jacob, OCD, regret, Tourette Syndrome

Jacob, Life Stuff, Tourettes, spirituality | Moxie Momma | February 6, 2010 5:00 am

19 Comments

By Tammy, February 6, 2010 @ 9:56 am

Awesome post, thanks for sharing it.
By Lyn, February 6, 2010 @ 10:30 pm

So true. I went through the same thing. It’s a process we have to go through before we can accept it. Yes, they already are mormal kids… but we go through all the emotions because we love them so damn much.
By Moxie Momma, February 6, 2010 @ 11:43 pm

Tammy, thanks for reading!
By Moxie Momma, February 6, 2010 @ 11:44 pm

It’s true Lynn – it’s all in the name of love and I think the emotions are healthy and necessary.
By Lisa Yatro Taylor, February 7, 2010 @ 10:23 am

great article, I can definately relate!
By Juliana, February 7, 2010 @ 7:06 pm

This was sooo beautifully written. I am so glad to have found your blog. He is so lucky to have you as his mommy!
By Moxie Momma, February 7, 2010 @ 9:09 pm

Thank you so much for your kind words Juliana. I’m glad that you liked what you read. And I think I’m the luckier one having him for my son. Thanks for stopping by.
Believe,
Michelle
By Moxie Momma, February 7, 2010 @ 9:14 pm

Juliana, just curious how did you find my blog? It’s always nice to hear what brings people to Moxie Momma.
By Moxie Momma, February 7, 2010 @ 11:50 pm

Lisa, I’m quite sure you know exactly how I feel. Thank you so much for reading.
Believe,
Michelle
By Kimberly Jones, February 10, 2010 @ 12:47 pm

I am so thankful I came across your blog, it brought tears to my eyes…our 13 yo daughter has been ticcing for a few years now, we have taken her to many “regular dr’s” who can’t figure out why and I am wondering what kind of doctor you suggest we see. We live in Athens, GA and I feel as though I am lost and looking in the wrong direction, if I can find the right dr. maybe we can get her feeling better.
By Moxie Momma, February 10, 2010 @ 4:52 pm

Hi Kimberly! I’m so glad you found my blog too! How did you come across me? It’s always cool to find out how people found my blog. Are your daughter’s tics vocal or motor or both? My son’s are primarily vocal though he does have several motor tics. I’m shocked that your regular doctors haven’t suggested Tourette’s. Our first visit was to a psychiatrist, but it was prompted mostly by Jacob’s anxiety. He was diagnosed at age 6 with TS and then at 8 with OCD. Many of my friends have taken their kids to a neurologist first. I don’t really know that it matters much. If you go to a neuro and he diagnoses TS then he’ll probably send you to a psych. There really is no “test” for diagnosing other than a checklist of sorts so I might suggest that you go to a psych. Probably cheaper. I have a several good friends in Athens who have kids with TS. I could put you in touch with them and let them suggest someone if you’d like. How is she coping? Do her tics bother her? My son really isn’t bothered by his tics so much as he is by the OCD. Feel free to call me if you want to chat. I’ll send my number to your direct email. Hope to hear from you soon.
By Debbie Dawidowicz, March 24, 2010 @ 8:21 pm

I have been where you were, and where you are now. You said this better than I ever could have, and I shared this to my facebook page. I hope that that is ok with you. If not, tell me and I will take it down. God bless you and your son. My son Evan, is now 15 and was diagnosed at around 6. He is a beautiful, wonderful, talented, smart and loving young man. As I am sure you son is, and will grow to be even more as time goes on. We are truly blessed. Debbie
By Moxie Momma, March 24, 2010 @ 9:08 pm

Thank you so much for your kind words, Debbie. Of course I don’t mind if you share my piece on your FB page. It’s all about awareness. I’m glad to hear that your son, Evan is doing well. These are some special kids we have been chosen to parent. We are blessed. Thanks for stopping by. I hope you come by again. I have one page on my site dedicated to TS stuff – The Tic Dock. Again, thank you so much for reading and sharing my story with your friends.
Believe,
Michelle
By Kayleigh-Jadee west, April 6, 2010 @ 3:40 am

my mum did the same when i was diagnosed with TS, its great that you have realised that children (im 13) can live with tourettes, it might be annoying but its not too bad to live with, im so happy for you and hope your son lives a great life, thank you for sharing your story xx
By Moxie Momma, April 8, 2010 @ 11:22 am

Hi Kayleigh! Thank you so much for reading my post. Just curious, how did you find my blog? Hope you stick around and check out some of my other posts. Sounds like you have a great attitude about TS. That’s so wonderful to hear. Far from broken, you and Jacob will grow up to be so much more tolerant and accepting because of your TS experiences. We are blessed to have people like you in our presence. Take care and always believe!
Michelle