FOR MOEBIUS MOMS AND DADS: DON'T DO IT

Don't do what?  Very simple:  don't blame yourself.  Don't blame yourself, that is, for the fact that your child has Moebius Syndrome.

This was something that came up among my friends on Facebook.  A Moebius mom raised the issue.  She felt some guilt because her child had Moebius.  Had she done something wrong during her pregnancy?  Was she somehow to blame?  And in the comments that followed, one could tell that more than one parent of a Moebius child has had these feelings.

Now what do I say in response to that?  I'm an adult with Moebius.  I was born with it.  Having Moebius certainly wasn't something I sought.  You don't have a choice in the matter.  But, I say, and I think everyone I know with Moebius would say:  don't do it.  Don't blame yourself.  It's not your fault!

Look, more specifically:  I am glad though that this issue got raised.  Obviously it's a feeling that some have.  One can certainly understand why it comes.  I'm a parent too.  Whenever anything at all happens to your children, you worry that somehow you did something wrong that may have caused it.  So get it out there.  It's a good thing.

But, as someone with Moebius Syndrome, and as someone who thus knows something about the condition, there are some things we know:

1] We're not exactly sure exactly what happens that causes a child to have Moebius Syndrome, but nobody thinks that parents, during pregnancy, can do this or that to prevent.  It happens.  But no one is to blame, and we shouldn't seek to assign it.

2] There are certainly times I wish I didn't have Moebius.  But I don't sit around and occasionally think of who to blame.  I don't waste my life doing that.  I know that no one is to blame.  Everybody else I know with Moebius feels the same way.  So we don't blame you, parents...and therefore:  don't you go around wasting energy blaming yourselves.

3] Instead, we have lives.  We have opportunities.  I think all of us being together on this network is a great thing, because now we can also encourage each other to seize those opportunities.  Many of us have good lives, and we're glad to have them.  And you parents have helped us get to that point where we can do something with our lives.  So again--don't blame yourselves.  Instead, be glad about how much you've helped your child along the way.

No blame.  No guilt.  Instead, seize the day!