THINGS THAT GET YOU THINKING
There's an interesting new story up on the Many Faces of Moebius Syndrome website, by a mom of a Moebius child named Jayden.  Part of her story deals with when, during her pregnancy, doctors realized her unborn child was different.  And then:
"Dr. Love did confirm that he had no hands and clubbed feet. I was asked if I wanted to abort. Abort? You want me to kill my child after you just told me his heart is strong and he will live! I was furious! Dr. Love sat and talked to me for what seemed like hours. He told me that God doesn't make mistakes and Jayden was given to me for a reason. He also told me that Jayden's brain will already be "programmed" for what he doesn't have & what he does. That its not like us loosing a limb. He made me feel so much better. I thank God for Dr. Love every day, to this day! We agreed on doing an amino & waited for the results. When I got home I told my family what was going on and their advice was to end the pregnancy. I couldn't do it. I was feeling my baby move. I seen him on the ultrasound screen. I heard his heart beat. I love my baby!"

Meanwhile, I am also right now reading this book--AUTOBIOGRAPHY OF A FACE, by Lucy Grealy.  Lucy, when she was just nine years old, was found to have cancer in her jaw.  They had to operate, and eventually removed nearly half of it; leaving her with a very obvious facial difference which she would have to learn to live with.  This book, which is a classic, very well-written (I can't believe I had not encountered it before this; all the credit for pointing me to it goes to my wife Lisa, a librarian who knows of ALL the good books :+)) is a fascinating exploration of what happened to the young Miss Grealy, how it affected her and others, and how she strove and is still striving to get in touch with the meaning of it all.  Of course, what can't help but strike one is the cruelty Lucy faced:
"...children WERE staring at me, laughing at me.  The cruelty of children is immense, almost startling in its precision.  The kids at the parties were fairly young and, surrounded by adults, they rarely made cruel remarks outright.  But their open, uncensored stares were more painful than the deliberate taunts of my peers at school, where insecurities drove everything and everyone like some looming, evil presence in a haunted machine.  But in those back yards, where the grass was mown so short and sharp it would have hurt to walk on it, there was only the fact of me, my face, my ugliness."

It is a fact of life, isn't it?  Some can't see the value of a baby's life if he or she isn't perfect, or at least "normal."  Others become mean and vicious when they encounter those with faces and bodies which don't measure up to their vision of "beauty."  Probably this stems from the intense insecurity it awakens in some people, as David Roche has pointed out in his writings; they can't deal with difference, with "otherness", perhaps because they realize their own supposed happiness and comfort, based on their supposed "normality" is all on the surface, more tenuous than they care to admit, and perhaps not there at all.

But what's truly important about our community is this.  Toddlers like Jayden are on their way to having a great, valuable life, with parents and family and friends who love him.  Lucy Grealy overcame a lot.  She dedicated her book to all of her friends.  Obviously she found meaning in her life and struggles (I haven't finished the book yet; I can't wait to do so).  Life with facial and physical differences is worth living.  It is too bad that there are still medical professionals and others out there who suggest that, if your unborn child has problems and differences, maybe you should abort that child.  I think that one of the witnesses this Moebius Syndrome/facial difference community has to offer the world is that ending such a life before it begins need not be the first option; that it doesn't have to be an option at all.  That people like us have great stories to tell, and great accomplishments to which to point, and that therefore life is worth living.  For everybody.

I bet you that even supposedly "normal" people, when they're having a bad day, can benefit from that message.  Hey, "normal" folks---you're welcome. :+)


"Your life is your message to the world. Make it inspiring."
-Lorrin L. Lee