When the Bird and The Book Disagree

"When the bird and the book disagree, always believe the bird." -- John James Audobon

When my son was 20 months old I was told his chin was recessive, (micrognathia), the lid of his left eye a bit droopy (ptosis), and his pinky fingers unusually curved, (fifth finger clinodactyly) and those were just some of the most obvious differences.  He was, according to the doctors, "mildly dysmorphic" (a little funny-looking). 

Now, I’ve been called plenty of unflattering names in my lifetime, “chicken legs” and “pimple head” being some of the kinder epithets, but I survived my adolescence by clinging to my grandmother’s words, “pretty is as pretty does”.  I knew that people who took pleasure from being cruel were going to have an ugliness all their own to wrestle with and I figured I had a better shot at conquering acne than they did of overcoming a mean spirit.  So, whenever callous words were thrown in my direction, I would hold my oily head up high and let them slide right off of me.

But what do you do when someone dissects every inch of your beautiful boy and comes to the conclusion that he is so far less than perfect that not only will he never win any beautiful baby contests, but he more than likely has a genetic syndrome that will render him mute or paralyzed or dead by the time he is a teenager?  You draw blood, and not from a swift whack to the geneticist’s fat head, but from your son’s tiny veins … and you hope to God their wrong.

The thing about genetic tests is that they take forever.  Six to eight weeks turnaround time, if you have an efficient lab.  The other thing is that they’re pretty darn accurate, so once you commit to finding out, you have to be prepared to accept the results as fact.  I’ve never been very good at waiting for bad news, so I decided to put my nervous energy to use by scouring the internet for information about genetic syndromes. As if becoming an expert on devastating diagnoses would somehow make it easier to receive one.

Do yourself a favor, especially if you are of childbearing years, and NEVER, and I mean NEVER, google “genetic syndromes”.  Unless you’re up for a string of sleepless nights, a severe weight loss and an intensive course in questioning everything you thought to be true about life.

All this time I thought life was mine to be lived.  A gift, sure, but my gift.  I knew I had a limited number of years to do with it what I might, but I believed I could bend it at my will, make it do my bidding. But just one google image search of 22q11 deletion syndrome and I knew I had it all wrong. Looking into the eyes of hundreds of children struggling under the weight of physical disabilities and the truth came into dazzling focus:  Life is not ours to be lived.  It is living through us, regardless of the cleft in our palate or the curve in our pinky. A heart defect does nothing to impede the life energy flowing through that heart.  Life is a force, not a thorough accounting of every microscopic piece of genetic material that makes up our form.

Defining our life by our physical form is like trying to drink the ocean through a straw.  We are too vast for such pointless endeavors.  Despite the chinks in our armor, and we all have them, we are limitless, incalculable, infinite.

The doctor’s may say differently.  But I’ma believe the bird.