"I DON'T LIKE HOW I LOOK"
So this question came up on Facebook just yesterday, among some of my friends.  And the question was this:  suppose you are a mom or dad of a child who has Moebius Syndrome.  And your child comes to you one day and says something like--I look in the mirror and I don't like what I see.  I look funny.  I don't like the way I look.  So as a parent, what the heck do you do?  What do you say?

I wish I had a magic answer for something like this.  I don't.  Thinking this way is certainly not unusual.  I have to think that most everyone with Moebius, at some point in their lives, has said to him or herself that "I don't like the way I look, I wish I didn't have Moebius"--that kind of thing.  So I think this is kind of normal.  It's not fun, but it's normal.

Okay, but, still...what then do you say?  Certainly those of you with strong religious faith know that your faith, whatever it is, addresses questions like this; and so that's one place you should go for an answer.  But peoples' faiths can differ, so I'll leave that part of the answer to each individual. 

Beyond that, here's what I'd also say.  First--yes, you look different.  But see, everyone is different.  Everyone is unique.  Everyone has a look that is special to them.  And the fact is, nearly everyone dislikes something about their appearance.  Even Hollywood stars, who are lauded for their beauty or "hot"-ness, complain about how they look.  You hear it all the time--people worry that they are too short, too tall, too fat, too thin, their nose is too big or too small, etc etc etc.  So you're not alone.

The truth is, one of the main reasons we who have Moebius worry about our looks is because it seems like so many in society SAY that we should feel that way.  Oh, they don't say it to us directly.  But the staring, the whispering, etc say it in volumes.  But here's the key:  that doesn't mean that we have to buy in to what "society" says.  Just because they want to stare and shun, doesn't mean we have to agree with them.  Instead, what we have to say is:  I am who I am, and that's okay.  You other people want to say I'm funny-looking and weird, but I'm not going to play your game.  Instead, I simply am who I am.  And that's it.  In short--don't give them that power over you.  Don't let them decide how you're going to feel about yourself.

Instead, look at it this way--you have the chance to teach people something.  So many people today claim to believe in "diversity."  Well, we are walking advertisements that remind you that, yes, diversity exists, all right, and sometimes it's there in ways you don't always expect.  You have the chance to teach people about Moebius Syndrome.  You have the chance to teach people that, yes, everyone really is different, everyone is unique, and they should respect that.  You can start with me, right here.

That doesn't make it easy.  Every day brings new challenges.  Maybe what I said above would be hard for a young child to grasp; feel free to take anything that's useful above and put it in ways that he or she would understand.  I do know one thing that applies to all Moebius children and parents--one of the best things you can do for your child is to always be supportive, and to try not to get frustrated with your Moebius child.  It can be hard to see your child be shy, to see him or her be sad about their looks, to see them have a hard time mingling with other kids, to see them a bit reluctant to go to parties or other events with other young people.  It's hard because you parents didn't have Moebius; it's impossible for you to imagine exactly what it's like to have it.  When you were a kid, you never had others staring at you or making fun of you.  Believe me, it's no fun.  So if your child is a bit shy at times, don't badger him or her, or get agitated, and especially don't say "but WHY don't you want to go?" (to a party, an event, whatever)

Because you know very well why.  Be supportive; encourage your child to do things; let them know you love them and think they're beautiful; but don't let this frustrate you. 


“If you're not failing every now and again, it's a sign you're not doing anything very innovative.”--Woody Allen (born 1935)