Saturday, February 20, 2010
Let me ask you this, "What do you tend to believe: your own two eyes or a piece of paper documenting what you're supposed to see?" I've think I've confused you right from the get-go.
Taylor was born on a Saturday. His physical features (what my eyes showed me) was that he had a slightly protruding tongue, a thick neck, a full palmer crease (check your palm to see if the crease stops mid way), folds on the tops of his ears and webbed fingers--for starters. My eyes saw what I saw, but my heart screamed , "NO!" Everything in me resisted.I second-guessed my own seeing. How could this be? I knew they are wrong.
Here's what the pamphlet stated that was left on my breakfast tray: "Down syndrome is the most frequent genetic cause of mild to moderate mental retardation and associated medical problems and occurs in one out of 800 live births, in all races and economic groups. Down syndrome is a chromosomal disorder caused by an error in cell division that results in the presence of an additional third chromosome 21 or "trisomy 21." I think it's the first time in my entire life when I left sausage biscuits and waffles un-nibbled-at. I was sick. (I've already admitted publicly to not being a happy camper---a wuss, a fraud, a weakling. It's all public record now. I have forgiven myself for being....well....me.)
Our doctors, just to be on the safe side (you know, we see what we see, but you're never going to believe us...side) informed us that a karyotype analysis would be run for Taylor. This piece of paper would prove once and for all, that yes, indeed we would take home a baby who could be moderately mentally handicapped. (Still not eating the sausage biscuits---but where was the weight loss, dammit!)
Within a month, just like a scheduled Master Card statement, here came the official Karyotype data on Taylor from the Medical College close by. Sure enough, right there on his 21st pair was that extra chromosome. You, my friend, have 46 chromosomes. Taylor has 47. I stared at that diagram. I sobbed. How could that one extra little squiggly line have such profound implications for my life? (Where was the White-Out and maybe they had gotten Taylor's mixed up with that other child's chart.) Nope. Here is was. I had the documentation to prove it. This was going to be a tough life.
Here we go, down that other conversation path. Question: Just because something is written on paper, does that means it automatically defines and dictates our lives? I have a couple of degrees--on paper. Am I highly-qualified? I have a divorce decree. Does it dictate that I be vengeful? Some of you have adoption papers, Chapter 11 papers, police reports,death certificates of loved ones, notification of foreclosures, papers that state you're the national winner of all great things. Let me ask this again: Are we required to be defined by what is written down? Do we have to let it mean our lives are over or meaningless or that we need to give up?
I have the paper work on my son. He has 47 chromosomes. I can see that in the drawing. When I look at that "document", I think of this from The Little Prince: What is Essential is Invisible to the Eye. I've got paperwork that says one thing. Taylor, on the other hand, does not live in that paper. None of us lives in those "proof papers." No, we live out here with one another. I know what my eyes (and heart) see. "It is only with the heart that one can see rightly. What is essential is invisible to the eye."