Monday, September 5, 2011

Seriously, We Have Our Own Month?

The other night my Facebook real-life friend Tom posted the following status update:
September is Craniofacial Awareness Month…those with differences come in many packages but the one thing all have in common is that there is a living, breathing, feeling person behind those big named syndromes and disorders.  Each should be acknowledged for their own individual talents, as well as their challenges.  Keep in mind beyond the face is a heart; the person you are ignoring, staring, gawking or pointing at is someone’s much loved child…Consider instead, a smile and a wave. 
Tom has Treacher Collins Syndrome (TCS) like me but like me his awesomeness extends beyond that.  I left a smart-ass comment for him wondering where our presents were.  I had no idea there was a whole month dedicated to people with craniofacial differences.  What’s next?  A commemorative stamp?  Probably not – did anyone see the New York Times article about the Post Office?  Am I timely or what?  Or maybe just psychic? 
I’m getting off topic.  Which is so typical of me.  And so typical of this blog.  Guess what?  My original intent when I started blogging was to write about living with a craniofacial difference.  This blog’s original name was “Forward Facing” and boy, was I going to be the voice for all disenfranchised people who had a craniofacial syndrome!  I was going to start a revolution!  (I’m big into starting revolutions)  Having TCS was the central, most important thing in my life; it defined me; it was who I was; it was my story. 
Guess what?  Nobody’s disenfranchised!  And revolutions are hard to get off the ground.  And, oh yeah, it’s not my story.  As I’ve written here over the past nine months, I realized that I’m not the person who I always thought I was – Denise with Treacher Collins Syndrome.  Nope, I’m just crazy Denise who isn’t as afraid of change as I once was, who is a winning Toastmaster, who loves chocolate milkshakes but stands firm in my dislike of tacos, and who keeps getting speeding tickets because speed cameras are the tools of the Devil.
But in honor of Craniofacial Awareness Month – and because this blog is the best therapy there is – I’ve decided that I’m going to write a few specific posts about living with TCS.  Then again, I’ll probably go off topic this month because, well, that’s just who I am.    
But promise me one thing.  If ever we run into each other, I hope you’ll smile and wave.


  1. There's something I'm confused about, so please don't be offended when I ask...

    You don't like tacos???

  2. I like crazy Denise, and she's so much more fun than old Denise obsessed with what everyone might think about her TCS. I am curious about these posts, though, because I always admire your candor.

  3. You're Lucky - I'll tell you what I tell all my friends - IT'S THE HARD SHELL! I'm not a huge fan of chip-oriented foodstuffs. But I just ate a burrito so you never know, I might just change my mind one day!