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Chandra's Blog

 

Entries in Tourettes (1)

Tuesday
Jan042011

Writers on Wednesday--Michelle McGee

I am honored to share the words of a dear new friend, Michelle McGee. She is the kind of friend who, when we met for dinner in Atlanta recently after a few months of emails and shared reading, I felt like I'd already known her for years, that this dinner was just one dropped into the middle of a series of many. We had an instant connection over our extraordinary children and laying it bare in writing, on how the convergence of these two things keeps our lives centered. Michelle is both hilarious and sharp, has a wisdom about her, an infectious smile and is a natural storyteller. But I think what I was drawn to and recognized immediately in her the sobering characteristic of a mother who has seen her child suffer, and who looks for the reason, for the rightness, the why... 

She talks about this and more on her website, in various essays and soon, in the sharing of her story about her son and their family's journey with Tourettes. I am grateful to have her here this week. 

 

Giving Up vs. Letting Go

I’m a part of a group of incredible internet moms whose kids have Tourette Syndrome.  Each woman is in a different stage of her journey and each woman respects the uniqueness of every journey represented in our group.  I am very thankful for this group and for the woman who got us all together in one place.

We have all succumbed to fits of anger and depression and found that, at those times, this group of phenomenal women has been our lifeline.  We have laughed and cried together.  We have shared our disappointments regarding our children and ourselves.  We have let our guard down and trusted these women that we only know through words.  We have found strength in our numbers.

But despite the strength that I have discovered within myself, I still stumble and I still doubt.  I find myself reading each post, digesting all the methods and medicines that have been tried, and wondering, have I given up on Jacob by choosing not to continue actively searching for a cure, a fix?

It’s been six years since Jacob’s diagnosis and I’ve tried several things – vitamin therapy, halfhearted diet restrictions, behavior management – several things before I decided that it was time not to give up but to let up.  And now I’m questioning whether there is a difference between giving up and letting up.

I was worried that that was exactly what I had done – given up on Jacob – given up on trying to help him.  So I turned to the source.  On the way to school I asked Jacob, “Do you feel like I need to keep trying, keep looking for something to help you. Like maybe I’m not doing enough for you, that I’ve given up on you with the whole Tourette’s thing?”

And he said in all his 12 year old wisdom, “Mom, I have Tourette’s because I’m supposed to have  Tourette’s.  This is who I am.  I’m meant to have this.  You can’t fix me and I don’t need to be fixed.”

Which is what I thought anyway.  My gut instinct told me you’ve done everything you can.  He’s happy.  He’s healthy.  He’s doing well in school.  Yeah, he still tics, but that’s just who he is.  A diabetic even when they are on medication, and living a healthy life still has diabetes.  No matter what I do he will still have Tourette’s – it’s neurological.  That’s how he was born.  There is no cure.  Not yet.

But at what point do I step back and say this is who he is?  It’s okay.  It’s okay for him to be a kid with Tourette’s.  But that’s not all he is.  He’s not just the kid with TS.  In fact, that’s such a small part of who he is.  He’s the tech kid.  He’s the kid who can fix my computer.  He’s the kid who can make his four year old brother double over in laughter and believe in magic.  He’s the kid who teaches himself calculus in  his spare time.  He’s the kid who makes awesome You Tube videos on how to modify Nerf guns.

He’s that kid.  He’s that kid first and then he just happens to be a kid who has TS. No matter what I do he’s still going to have TS and he’s still going be okay.

I’m not judging people who haven’t gotten to this point.  It took me 6 years, and maybe some people will never get to this point.  That’s fine too because the bottom line is that as mothers we are doing what we feel we need to do for  our kids.

I felt after 6 years that I needed to stop trying to fix Jacob.  I needed to stop trying to figure him out,  because I knew what was going on with him.  I knew he had TS.

I’m not a scientist; I can’t find the cure.  People are working on that for my son.  But you know what people aren’t working on for my son? Having a relationship with him.  Getting to know him aside from his TS.  And that’s what I needed to spend my time on.

I needed to spend my time on getting to know this amazing kid.  I needed to spend my time hanging out with him and not trying to fix him or solve his puzzle every time I looked at him.  That’s not what I’m supposed to do.

I’m supposed to enjoy him and the whole time that I was trying to fix him I wasn’t enjoying him.  I wasn’t enjoying him at all because I was stressed that I couldn’t do what I thought I needed to do for him.

But you know what?  What I needed to do for him was actually pretty simple.  I needed to be his mother.  And to listen to him.  And enjoy him.  That’s what I needed to do.

I see now that there is a huge difference between giving up and letting up.  Giving up means you lose hope and feel defeated and let your garden die.  Letting up means that you stop and smell the flowers that have bloomed right in front of you while you were reading a book on how to grow your garden.

 

Despite the gardener’s best intentions, Nature will improvise.  ~Michael P. Garafalo, gardendigest.com

 

* ***** *

 

Michelle McGee is the author of the upcoming memoir He’s Not Broken:  A Mother’s Journey to Acceptance.  She is a regular blogger for Skirt.com where many of her humorous pieces have been chosen as Editor’s Picks.  She also blogs at her own site www.moxiemomma.com.  Michelle’s work can be found on More.com, She Writes.com, This Mother Can Run.com, The Savannah Morning News, and Something Special Magazine.  She is an active voice in the International and regional Tourette’s community and has appeared several times on TV to promote TS awareness.  She and her son have done numerous videos on You Tube discussing the misconceptions and challenges that surround TS. 

Jacob talking about TS:

http://www.youtube.com/user/warner13#p/u/32/CFMm8tlj1dg 

Michelle talking about TS:

http://www.youtube.com/watch?v=xX-ZfuBrSL8