BUT ALSO...JUST ORDINARY FOLKS
You know, at the recent Moebius Syndrome Conference, my wife and I were up late one evening chatting with a very nice couple from Canada, who have a son with Moebius.  And later on his mother said that she was so glad to have talked with us, because it reminded her that adults like us with Moebius Syndrome are, well, in a way regular folks, who have daily concerns and interests just like everyone else.  And it helped her to know that, because it gave her hope that her son, when he grew up, would be able to have a regular life like that (and it's only natural, I think, for parents of Moebius children, who often never encountered it or heard of it before their child had it, to wonder at first--what kind of a life will my child have?  Will it ever be normal?).

But what my friend Laura said there is true--we with Moebius have lives like everybody else, and it is good to remember that.  We have relationships, along with their ups and downs.   We have jobs.  We have interests and hobbies.  My wife is a librarian.  I teach history history in college.  A good friend of ours is a photographer.  Another works in the medical field.  When it comes to hobbies, I love to read, and I love following sports and my favorite teams (when the football season starts, you'll see me picking games on this blog).  A friend love to go dirt biking.  Another loves the Civil War.

So, yes, we have Moebius Syndrome, but Moebius Syndrome doesn't completely define who we are.  We have it, but we also have lives outside of it, and many, many of us have accomplishments outside of it.  If you have a child with Moebius Syndrome, if you are a teen with Moebius, believe us--there's a whole life ahead, and there's a lot that you or your child can do and accomplish.  Yes, we are regular folks with lives...and while that may sound boring and humdrum, the truth is that we shouldn't take it for granted.  Instead we should be glad of it. :+)

“Be daring, be different, be anything that will assert integrity of purpose and imaginative vision against the play-it-safers...”---Cecil Beaton (1904-1980)