the truth about designer genes

So there's something called the Consensus Theory of Truth, which states the following: "That which is universal among men carries the weight of truth." I was reminded of this after watching the musical "Wicked", a clever tale that reveals the untold story of the Wicked Witch and Glinda the Good from The Wizard of Oz. You learn from very early on in the show that the Wicked Witch was indeed not wicked. She had the misfortune of being born green, but was otherwise like any other girl - and surpassed her peers in her sense of justice, intelligence, and desire to do good. But as she found that authority was not on her side, she was branded as 'wicked' and the people of Oz were made to believe the most horrific things about her.

This idea of perception was a topic of conversation between me and Mark. Bad driving is something we encounter often. What really bothers us, however, is when someone else on the road seems to think that WE are the bad driver when we are clearly in the right and are, furthermore, a bad person - and unleashes an expletive or gesture of some kind to tell us so. Case in point: As I was driving up a local road, a white car started approaching me in reverse. I thought for sure the driver didn't see me, and decided that the best thing to do for both our sakes was to honk. Now most car horns sound the same, but that there are ways people put some emotion into them. If they're really mad, they plant the palm of their hand on horn and honk like it's going out of style. Mine was not one of those honks. It was, if you will, quite a friendly honk (I know you've thought about how to honk half-apologetically). So when she screeched next to me, stuck her head out of the window and called me the 5-letter word for a female dog, I was stunned. This woman had taken a benign honk and had translated it into a threat of some kind coming from "a malicious, unpleasant, selfish woman" (dictionary.com). I decided that she needed to be informed that her perception of what my honk meant was absolutely misguided. I put my car in reverse to get alongside hers, rolled down my window and got her attention.
"Excuse me, but I was honking because I didn't think you saw me, that's all."
She looked at me with a blank expression.
"Oh," she said with a shrug, and proceeded to get out of her car and walk away. A part of me was expecting an apology, but I wasn't surprised to not get one. I was satisfied enough to have enlightened her for just a moment. Perhaps I spared another well-intentioned honker the unwelcome verbal garbage that was tossed my way.

But there is another, ongoing experience with perception that lingers with me in a way that the first story doesn't. My son has an extra 21st chromosome. He has Trisomy 21, otherwise known as Down Syndrome. I know what my perceptions were about about people with Down Syndrome at the point of my son's diagnosis. I was prepared to learn the truths and myths, all the while keeping in mind that this boy was still half of me and half of my husband, just like any other baby. But what I wasn't prepared for were the heartfelt condolences I got from others as I shared the news. I was 19 weeks pregnant when I found out. I went through the grieving process, and eventually not only came to the point of acceptance, but of fully embracing what God had given me. But others had not. Their perceptions hung on what limited knowledge they had of Down Syndrome. There were people asking me why I didn't have an abortion, wondering out loud to me if my husband and I were 'compatible,' remarking how they knew someone who got the same diagnosis and how depressed they were. There was another group of responses that tagged us as saints, as if there were only a 'select' group of people that could possibly handle a child such as ours.

I knew they meant well, but here's the truth: no one who meets my son would dare apologize for who he is. He has a smile and laugh that is infectious. His mild temperament has - at least for a moment - been the envy of many moms whose children are raging to and fro, crying for no apparent reason. His eyebrows are shaped like those of a woman who just paid $50 to get hers waxed. Strangers who have no clue about his enhanced genes gawk at his beauty. He can give you the biggest ego boost if you decide to make a silly face. He loves to laugh, clap, dance, and cuddle. He loves to live.

Despite these truths, I know will continue to be pitied for who he is. What people have perceived about Down Syndrome has in large part come from what they have seen and heard. One might argue, 'Seeing is believing" or "Hearing is believing." But there are people who cannot see or cannot hear, yet have such strong faith.
Our perceptions cannot be simply based on body parts that we can live without: eyes, ears, hands. After all, there are plenty of people who can see but lead their lives as if they are blind. Our bodily senses cannot determine the worth of any life. Any meaningful experience that is initially taken in through our non-vital senses can only find its meaning in what is vital - our hearts, our minds. So I'll relish in my son's extra chromosome - 'designer genes' I like to call it. Because the truth is that anyone who encounters him cannot help but love him.

In my imagination I send my son into the Land of Oz, where senses prevail over the heart. Here comes that Down Syndrome baby, they might whisper. Just spend some time with him, I tell the people. Allow the sheer delight of this child to enter in, and you'll learn to feel again.

The Truth

The greek word alitheia means 'truth.' I've dedicated this blog to telling the truth about me and those I love - specifically, my son Lukas. Ironically, I'm going to start out by talking about lies. I've told them. I'd bet money you've told them. But then there's the mystery about why we tell lies. I do know that in the fourth grade I told all my classmates one of the greatest lies; I had a horse. Not a make-believe one. A real horse. Looking back I realize the circumstance that prompted me to make up such a fairytale (well, at least to me owning a horse would be a fairytale) was that I didn't fit in. We had just moved, I didn't know anyone, and as usual I was the only Asian in the school. People gave me weird looks as if to say, "So that's what they look like." Obviously, the idea of me having a horse would immediately spark an interest of the most positive nature among my peers and effectively overshadow anything peculiar. But it didn't. After being a teacher of children for several years, one thing I have come to understand about 'coolness' is that if you boast about having something, it better be something that every other kid wants - and can, by some stretch, imagine having.
"I have a horse."
"You have a horse? Oh..."
What I anticipated would be wide-eyed looks of envy only turned out to be perplexed or uninterested shrugs. Horses were of another world to my classmates. I was the only one poring over book after book about horses, cleaning out the library on them, gazing at their manes, eyes, and graceful trots. But it wasn't enough for me to just be fascinated with them. I had to have one, and as long as I others believed I did, life would be tolerable. Well, my lie was ucovered a year later. I still remember it. Stacey Wunderle asked me point blank if I had a horse or not. I told her no. She asked me why I told a lie. I said I didn't know. Perhaps one blessing of our childhood years is that the conversation can stop at 'I don't know' without delving into the psychological roots of messed-up behavior.
So now I have a son, Lukas, and pretty much every day I think of the rules our society has about what is acceptable. Even as an 11 year-old I had a sense that life was about being acceptable by people, and made up lies in an attempt to attain that kind of approval. But with Lukas there is no lying. From one angle, he doesn't lie. He is deliberate in his actions. No shadiness. He will tell you in his own way what he thinks and wants. From another angle, there is no lying about him. I will tell people the truth about him. And I have to admit, I hope these truths reach the many people that wouldn't have given him a chance to live in the first place. More to come...