WHAT I LEARNED AT THE CONFERENCE: part 3

I also attended a session that was just for adults with Moebius Syndrome.  It was called the "Just for Adults" meeting (we also had similar sessions that were Just for Moms (moms of children with Moebius), Just for Dads, and Just for Grandparents.  And in two years, we might just add a session that would be just for the siblings of children with Moebius.  These meetings are very popular and help people a lot.

In the Just for Adults session, which was led by my esteemed colleague Matthew Joffe, what we did was sit around in a big circle, and the session was opened up and anyone could bring up any topic they wanted to bring up, and all could say whatever they wanted to say.  I tried to listen very carefully to what everyone brought up, and so this is what I learned:

1] So much of having Moebius Syndrome as an adult is about adapting.  It's about adapting to your life, to your circumstances, to whatever life throws your way.  Of course, having Moebius means it is very difficult for us to show facial expression.  But we want to be able to do so.  We want to smile.  So some us seek the smile surgery; and while that isn't for everybody, if you do want it, we agreed that we'd encourage you to get it.  Some of us have a hard time, in our eyes, of creating tears.  We suffer from dry eyes.  But we heard how there are minor surgeries that you can get and products that you can use that can help you with that.  Moebius Syndrome affects people differently.  We don't all have dry eyes.  But no matter what, we are all adapting, and doing so very well, every day.

2] Some had never met anyone else with Moebius Syndrome before.  But now they had.  And it was an overwhelming, but outstanding experience, for all involved, we all agreed.  For many of us who are older, when we were in our teens and 20s, we thought we were the only ones.  We thought we were alone, that nobody else looked like us.  We all agree we're so fortunate enough to have these conferences and to able to connect with each other on social media.  We are not alone.

3] And finally, I think we all agreed that we can.  That is, that we can go out, we can accomplish things, that nothing need hold us back.  We are people who have jobs, and who have been successful at them; we are teachers, we are managers, we attend college, we are going to graduate school, we're successful photographers, we're doing it all.  And you can do it too.  You deserve a life.  You will have a life.

At the end of the conference, we had a slideshow of pictures taken there; and the last song playing along with the pics was Switchfoot's "Who We Are."  And you know--some of the lyrics from that song sums up us Moebius folks quite well.  Here's an excerpt of the lyrics from that song:

They said it's complicated
They said we'd never make it this far
But we are

They said the fight would break us
But the struggle helped to make
Who we are

Who we are
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
Who we are
(in the fever of our youth)
Who we are
(We've got nothing left to lose)
Who we are
(There's still time enough to choose)
Who we are
Who we are
Who we are

Who we are
(I wanted something with meaning)
Who we are
(Yeah I wanted something to believe in)
Who we are
(Yeah, sure as I'm here breathing)
Who we are
(I wanted more)
Who we are
(Yeah, I wanted more)
Who we are
(Yeah, I wanted more than just a feeling)
Who we are
Who we are
(Yeah, for more than just a season)
Who we are
Who we are
(Yeah, we become what we believe in)
Who we are