MORE POST-CONFERENCE MUSINGS
So this one is going to be a riff off of the post of yesterday.  In that one, I wrote about how many parents of Moebius children often have to be very, very strong advocates for their little ones, and have to ignore the at-times negative chatter and predictions coming from their doctors.  And in those situations, I urge parents--go for it.  Don't listen to the doubters.  And you should feel free to educate medical professionals when they indicate that maybe they don't even completely understand Moebius Syndrome.

Again, I do not want anyone to think I'm trying to slam all doctors and those working with them.  I'm not.  There are excellent medical folks out there who know what they're doing, who educate themselves, who listen, and who do great things for our kids.

But still--so many parents reported all this negativity.  Your child has Moebius Syndrome.  He or she will therefore never be able to do this, do that...sometimes it almost sounded like some parents were being told their child would be in practically a vegetative state.

But you know, there's a real positive to take out of this.  And it is one of the things I mentioned yesterday:  that despite all the dire forecasts, all you moms and dads consistently report to us great achievements your children pile up every single day!  You're told that your children won't be able to walk, or talk, or achieve in school, or drive a car, or run or jump or swim etc etc etc.  But what do they do?  Your children right now are walking, talking, doing great in school, just like other kids, and driving, running, and jumping.

There are probably plenty of parents out there of very young children with Moebius who wonder what kind of life their baby will have.  There are others of you out there who hope your Moebius child will achieve even more, who maybe is growing and developing slowly.  And there are those of you with Moebius who are wondering how far you can go, and what you can do.  So--see the previous paragraph...and take it with you.  Remember it.  Don't forget it.  There have been all these predictions in the past about what children and others with Moebius can't do; and over and over they've been WRONG.  Right?  They've just flat-out been wrong.

And that doesn't have to be a bad thing.  That can be a good thing.  That tells all of us, be you parents or someone with Moebius, that you can do it, that you can achieve, that your child can achieve.  All we have to do is keep at it, day after day.  And we will.


“He has a right to criticize, who has a heart to help.”--Abraham Lincoln (1809-1865)