I ‘discovered’ Moebius Syndrome in the early 1980’s from a newspaper article in a Portland, OR, paper.  The paper discussed a young lady in Columbus, OH, who was scheduled for Smile Surgery.  From my own research and discussion, it became obvious what my mother had always labeled a ‘birth injury’ was actually Moebius Syndrome.  The birth injury story never made a lot of sense while trying to explain a deformed right hand and general stiffness and lack of coordination that has plagued me all my life.  At the end of WWII my folks spent their savings having me checked out at Children’s Hospital in Denver, with no diagnosis.  Sadly, my mother passed away six years ago not accepting the Moebius Syndrome explanation.  Only now do I occasionally (once) find a doctor who is familiar with Moebius.    

I’ve never considered myself handicapped except when trying to swing a golf club.  Over the years I’ve been able to gain a measure of comfort speaking in front of folks, even though I’m acutely aware I have a speech problem.  Someone asked me awhile back what the worst time was for me.  Had to answer in two parts; the worst period of time and the worst single day. 

The worst time for me was my teenage years when differences, particularly in regards to looks and actions, set me apart.  The dating game will always be tough, even without Moebius, and my self-esteem suffered, and continued to suffer through most of my college years. The single worst day for me was the day I first heard myself on tape.  I knew by folk’s reactions that I couldn’t speak ‘normally,’ but until that time (was about 15-16), I hadn’t known what it was like.  It was weeks before I could manage much more than single word answers to questions. 

My message for those with Moebius, or more importantly, for parents of Moebius children, is that ‘We are what we are, and the sooner we learn to accept our liabilities and move on, the happier we will be.’  Probably the most important thing parents can do other than helping children build their self-esteem, is to make sure they know their weaknesses.  My parents raised me to work hard and to concentrate on my assets, not my deformities, and I praise God that I have been extremely blessed following their advice! 

Dandmmoffitt

The Game We Play

By David Moffitt

The Master Dealer works his Craft

    His cards to each he flies.

Moebius to some is given;

    Mothers begin to cry.
 

The cards are dealt one at a time,

    They are lying on the table.

Can we play this hand, good or bad?

    Is Loser now our label?
 

Heaven forbid!  God’s in charge,

    No one is left outside.

Although we all have handicaps,

    We have no fear to hide.
 

We have no guarantees in life

    No one to cuss or blame;

God treats each one with love and care

    As we learn to play the game.
 

We are what we are, warts and all,

    Imperfections all abound.

We accept ourselves – here we are,

    Support is all around
 

So face today with optimism,

    With wit and charm to share;

The smile we hold inside ourselves

    Is witness to our care.
 

Dedicated to all of us who have to keep our smiles inside.