POST-CONFERENCE MUSINGS (3rd in a series)
So today I want to talk a little bit about the panel I moderated at the Philadelphia conference; we titled it "Moebius Syndrome: Triumphs Through the Years."  On the panel with me were several of my good friends, including:  Chelsey Thomas; Roland Bienvenu; Christa Trelenberg; and Henrietta Spalding.  All of us on the panel, of course, have Moebius.

What we were aiming for was to talk about our lives dealing with Moebius Syndrome, focusing especially on how we've been able to handle the challenges we've faced, and have success in our lives.  Everyone did that very well.  And in listening to what my fellow panelists had to say, here are a few commonalities that struck me:

First, we all for sure HAVE faced challenges.  Often, doctors told our parents that we might not live, or that we wouldn't be able, when we grew up, to function well in society.  We were at times teased and bullied when we were kids and teenagers.  When I was in graduate school, one of the professors in my program suggested to me that, due to my condition, I'd probably never be able to teach, and so instead I should look into going into archival work (presumably, that would be good because I'd rarely come in contact with people).  Not that I listened; I became a teacher anyway and have been doing it for over 20 years, winning teaching awards, etc etc...

But then, that's been the case for everyone on the panel.  Roland has been working for years in a very important position with the city of Houston.  Chelsey is about to graduate from San Francisco State University.  Christa is just beginning a new job of her own, and she's thrilled with it.  Henrietta has also been a teacher, and has a prominent role with the outstanding organization in the UK called Changing Faces.  And I know many other adults with Moebius, so many of whom have success stories of their own they could tell.

So if you're out there, and you're someone who has Moebius Syndrome, or you're a mom or a dad whose child has Moebius Syndrome, then always know this:  take heart.  Be strong.  There are others who have been where you or your child is now; and they've had good lives.  They've had their "triumphs", as the title of the panel suggested.  They've found ways to succeed.

So can you.  So can your child.  Believe it!


“We make a living by what we get, but we make a life by what we give.”--Sir Winston Churchill (1874-1965)