I don’t know if I should weep or vomit.
Sometimes when I read about genetic testing that is aimed at “eliminating” Down syndrome, I feel like some company/government is telling me that my child’s life is worth nothing, and, in fact, they are telling me that his life should not be lived. I see the articles about prenatal testing and how Down syndrome can be “eliminated.” (Somehow these promos remind me of weed killer commercials–”get rid of the weeds before they ruin your garden!”)
Let’s be VERY clear here. Down syndrome isn’t “fixed” because of a prenatal diagnosis. It isn’t something that a surgeon can go in and alter so that the baby becomes a typical child. Having an extra chromosome permeates every part of that child’s being.
When geneticists and governments start talking about lowering the incidence of Down syndrome, they are not preventing Down syndrome from occuring. No, they are lowering the incidence of Down syndrome by recommending that mothers abort babies who have a Down syndrome diagnosis. Nobody “fixed” those kids. AND, I might add, THEY DON’T NEED FIXING!!
Governments worldwide are spending billions (yes, Billions) of dollars to eradicate people with Down syndrome. How much are they spending to research ways to make their lives better? VERY little. How much time/money/effort is spent to prevent child abuse? I’ll give you a hint–a test that detects Down syndrome can be sold so companies make money by developing and selling it. There isn’t much of a direct corporate financial incentive to preventing child abuse (though the effects on the child are long lasting and costly not only in money but also in damage to the child and to society).
When we were told that Dominic had a high probability of having a chromosomal disorder (we were bracing ourselves for Trisomy 18 which we believed would have a life span of–at most–a few days), we had a referral to go and discuss “options.” I acted confused and asked what option could there be other than having a baby? Sweet smile, listen to the silence….We skipped the appointment.
He is a blessing and a joy and there is not one thing I would change about him, except–on a regular basis–his diaper.