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The gift of Tourette Syndrome

When my son was about 7, I was really in a dark place. Two years of railing against tics that were present, as well as invisible “what-if” situations that maybe would or maybe would not come to pass in the future, had me very down.

All my gluten-free cooking helped, but it did not erase the minor eye rolls.

All my dedication to prayer and letting go soothed my aching soul, but it did not eradicate the occasional “Tarzan” warble.

My husband – who could fix everything from a leaking toilet to an elephant game whose motor was not longer shooting butterflies into the air – could not fix Tourette.

I was, to put it bluntly, in grief. I had heard about the stages of mourning, but for some reason I thought one experienced them one step at a time. “Ooh, today we have desperation. Awesome! tomorrow? Anger.” For me, it came like a whirling tornado of emotions – forceful and overwhelming – all at one time. “Despair! Disbelief! Fury!” It was like one giant trifecta of intensity. In Buddhist language this is often referred to as “losing ground.” In Andrea language, it was referred to as, “This SUCKS.”

During this exciting chapter of my life, I brought Stink to a specialist. He wasn’t having any behavior problems that are associated with Tourette on other fear-inducing websites, but he sure was unfocused and at times defiant.

I suspected ADHD and wanted help managing it. The good doctor was phenomenal. Within a week, we had a routine down at home that took the responsibility off of me and put it onto Stink.

Looking back, it was nothing but good old-fashioned common sense. But I was too distraught to figure it out on my own. I was smart enough, however, to book a follow up appointment. But it wasn’t for Stink. It was for me.

This psychologist,  a gentle soul in his late sixties, happened to be a Catholic. As a Catholic myself, I was curious about his God take in what I considered to be so… frigging… unfair.

We spoke about what I thought parenthood would be and why I was so distraught over a syndrome I never saw coming.

We chatted about my husband and my different world views – me being of a spiritual mind and my husband being of a pragmatic one.

I admitted that, perhaps, I wasn’t as equipped as I thought I should be in dealing with marriage and parenthood. Maybe there was a mistake.

This man, with his kind eyes and quiet demeanor, reminded me that our God is not one of mistakes. “Your marriage is won’t always be happy, but it can be holy,” he reminded me. “Stink was knit by God in your womb,” he said. “Tics change constantly, but our God is one who stays the same.”

I wanted to say something that sounds like “Duck” and ends in “You.” That was not an answer that was going to fix Tourette or my relationship issues!

But instead, I shook my head in agreement and started crying. Of course, he was right.

After moment, he posed the simple question: “Do you know what God’s greatest gift to you in all this is?”

I had no idea. I really didn’t.

He looked me right in the eye and said, “The biggest gift God is giving you is Tourette.”

Three years later, after a ton of processing and times where I still rail against the machine, I know for a fact that this man was 100 percent right. In a media-induced culture where everything is “now now now” and instant-gratification based, diagnoses and relationships are rarely easy. But they are a present – a true gift – because we get to live life on life’s terms.

In this season of light – whatever you celebrate – please know that if you are hurting I have been there. And I get it. And while you may want things different, there is a true plan for your child. You might not be able to always change tics, but if you allow yourself to change and be open to how glorious life can be despite perfection, I promise you will have one present you will never want to return.

My favorite present of all time are my kids. Go hug yours today!

Visit my Happily Ticked Off blog, where there’s much more to read and see!

6 Comments

  1. I can see a gift in Tourette’s – my son processes information differently. He is so unbelievably intelligent and is able to think outside the box. He is also, most importantly, so very kind – without his Tourette’s he wouldn’t be him. He is quirky and beautiful and perfectly imperfect.

  2. Hi ,

    I do not agree that suffering is a gift but I may be able to help your child the same way I helped myself with my neurological disorder. Please visit my site at http://www.neurowellnessnetworkcom.

    I am a former sufferer of dystonia and want to offer you my support if you are still struggling with this awful disorder or another neurological disorder.

    I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

    It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
    on the health fundamentals that I have discovered that can make a huge difference on improving one’s health.

    I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
    22 countries and 48 states. Please feel free to call me if you would like to learn more about my work
    and how I have been helping others.

    There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.

    Remember – I Care,
    Steve Zarren
    410-486-2525
    http://www.dystoniadisease.net

  3. Hi Joe – Maybe I said it wrong. I don’t think anyone sees any challenges as a gift. But it can be in the sense that we can choose how to respond to it. It can break us, or our kids, or we can become better. So for me, yes, it’s a gift. And for my son, in his words, he wouldn’t change it. I know this is not the experience for everyone but it is for us.

  4. The greatest gift is God’s love and then our children. That they have TS is not a gift. They are the gift. What comes with them, whether it’s TS or something else, is just part of who they are. I certainly wouldn’t ever consider TS a gift.

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