BACK FROM THE CONFERENCE--INITIAL MUSINGS
Okay, I'm finally back from the terrific Moebius Syndrome Conference, held this past weekend in Philadelphia.  Over 420 people wound up attending--our biggest conference yet--and I think everyone is so happy and exhilarated by it all.  Naturally, being with everyone all weekend and really gets one thinking about a lot of things, so this week let me share some of the things that the conference got me thinking about.
First off, let's start with...

PARENTS AS ADVOCATES
In talking to and listening to parents of Moebius children this past weekend, one thing that struck me was how many parents reported that the medical professionals they dealt with in their towns and cities so often knew very little about Moebius Syndrome.   But, beyond that, so many of them--according to what parents told me and each other--were so very negative about their Moebius child's chances in life.  Your child, too many doctors said, will never be able to do this, will never be able to do that.  Doctors prescribed courses of action that weren't necessarily appropriate (almost surely due to a lack of knowledge about Moebius Syndrome).  One Moebius dad even told us that when his wife was still pregnant with their unborn child, but it was clear that the baby would be born with differences, with club feet for example, their doctor raised the possibility--even seemed to advocate--that they should terminate the pregnancy.

Now of course Moebius is indeed a rare condition, and one can't expect every medical professional to know absolutely everything about everything.  But at the same time--if you don't know, shouldn't you refrain from prescribing courses of action out of ignorance?  And why be so relentlessly negative?

Of course, what the conference also taught everyone is this, though:  that time and time and time again, the medical professionals were wrong, wrong, wrong about Moebius children.  What was said they'd never be able to do...they have done.  Parent after parent reported to me that the progress of their children has been amazing, and never would have happened if parents had simply given up and accepted negative diagnoses.  It's incredibly inspiring, and is a credit to their dedicated parents, along with the children themselves.

Now, to me, what this tells us is this:  if you're a parent of a Moebius child, several things will either surely happen or are likely to happen.  First, surely you, when your child is born, will become an expert on Moebius Syndrome and how it affects your child.  It's a labor of love, it happens naturally, and all of you are amazingly knowledgeable.  So, second:  remember then that you as a parent may very well know more about Moebius Syndrome than your doctor or pediatrician.  This isn't guaranteed; there are some incredibly dedicated medical professionals and doctors out there and I don't mean to slam all of them.  But based on what I heard this weekend, it can happen.

So you parents should proceed with confidence.  Educate the medical folks you come into contact with about Moebius.  Give them information, if you have it; or tell them where to find it.  Be confident in your knowledge of Moebius Syndrome, and of your child.  If your doctor or pediatrician maybe, you fear, is wrong about something or is heading down the wrong path, question him or her about it and let him know what you know.  In the end, it's you who is responsible for your child, who knows your child best, who knows Moebius very well, and so you need to do what you think is right and best for your child.  Don't be afraid to do exactly that.

“When things go wrong don't go with them.”--Elvis Presley (1935-1977)