He's Not Broken: A Mother's Journey to Acceptance
Contributor
Written by
Michelle McGee
October 2010
Contributor
Written by
Michelle McGee
October 2010

Hello everyone. My name is Michelle and was 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 were 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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  • [email protected]

    every word i could feel i have lived through and survived these stages as well. my daughter was diognosed with smith magenis syndrome at 2 and half and its tough times when diognosis hits. i equate it to a bomb going off! you are the first thing i have read on here i have only just joined and i already glad i did! JANE XXX

  • Kari Wolfe

    Michelle, this is beautiful. It's hard being the parent of a special needs kiddo. My daughter is autistic--she's 4 years old--and I'm so still stuck in the middle of it all. It's nice to know that there is a light on the other end! :)

  • Densie Webb

    Michelle, I tear up remembering. My son is 19 now. The telltale signs started when he was 6 (eye blinking, sniffing). Official diagnosis came when he was 9. I can't remember how long it took before I could openly say, "My son has Tourette's Syndrome." We also tried herbs, vitamins, biofeedback, accupuncture, diet therapy, meds from Europe, took him to Johns Hopkins and Baylor. Looking back, I can't believe we all survived as a family unit. If I sat down and tried to make a list, I'm sure I could come up with a 100 different tics, sounds and various combinations he made over the years. He's been one of he lucky ones (some say 50%) whose symptoms wane with age. Turns out he's got mad social skills, a killer smile and a wicked sense of humor. Your cutie will make it and so will you and you'll be closer as a result of the journey.

  • Michelle McGee

    Thanks Catherine. My heart breaks when I read it too because I can relive it so easily. Thanks for reading.