The honest truth is that the hardest part of having a kid with Down syndrome is knowing that he was born into a world that isn’t welcoming to people like him.
A situation revealed itself yesterday morning which involved my learning that the last time Kevin visited his grandparents a couple of weeks ago, his grandmother used the word “retarded” repeatedly in Kevin’s presence (to him or just in front of him, I don’t know). A woman in her fifties, who is educated, who has worked as a nurse in a hospital, dealing with people from all walks of life for years and years and years. If someone doesn’t gain compassion from that, I don’t know what to think. A woman who knows that her fourteen-year-old grandson has a baby brother with Down syndrome (this is Kevin’s grandparents on his biological father’s side; they are not involved in my other kids’ lives by their choice). A woman who touts herself as a good Christian, who likes to remind Kevin of Christian values (I am so very weary of this kind of Christian hypocrisy; does anyone really think Jesus would have gone around calling people retards? Or calling things he didn’t like “retarded”? I’m so tired of people who wear this facade of good Christianity, whose souls are full of holes and the worms that eat those holes through). No wonder Kevin was heavy-hearted and downcast when he came home from his grandparents’ a couple weeks ago (though he wouldn’t tell me what was bothering him; I suspect he doesn’t want to give us any more reason than we already have to have a problem with these people). How confusing and hurtful that must be for him to have his heart divided like that – here on one side, his fierce devotion to and sense of protection towards his baby brother, and here on the other side his grandma who has been a part of his life literally since the moment he was born, a woman who he looks up to, throwing the word “retarded” around.
But sometimes Kevin shows that has more character than a lot of grownups. Days later, when Spread The Word To End The Word came on March 2, he sent his grandma an email pointing out to her that he had heard her say “retarded” several times when he was at her house, that it bothered him, why it’s hurtful and offensive, and he actually said to her that she needs to make “better choices” in the language she uses.
I’m so proud of him, but also heartsick that he even has to deal with a situation like this.
And my other son, my baby, the butt of all this. Sometimes it all feels so futile, all this advocating, all this spreading the word.
No, the world Finn was born into isn’t particularly welcoming to people like him. In fact, the world would rather do away with any possibility of breeding more of him. And so, in our quest for perfection, in our quest for vanity and beauty and the best and the smartest, we continue to develop more and more sophisticated prenatal screenings so that babies like Finn can be detected earlier and earlier and obliterated before they’re much more than a blip on the ultrasound screen.
And I’m torn about it. I can’t find it in myself not to support women’s reproductive choices – including the choice to terminate a pregnancy. Taking away women’s power over their own bodies, forcing anyone to go through with a pregnancy they don’t want – I can’t see how that can be positive in any way. (And honestly – and I know this will be controversial – I have been curious for a long time about what goes on in Eastern Europe; virtually every baby born with Down syndrome ends up in an orphanage. Aren’t they doing prenatal screenings over there? A quick Google search tells me that abortion is legal there. There is a part of me that can’t help but think that aborting would be better than sending these babies to orphanages. Yes, some of those babies end up being adopted by loving families from overseas, but a great many of them end up in institutions where they die.) And yet, it causes me great pain to know that babies like Finn are the target of so many terminated pregnancies; that apparently the vast majority of people don’t want a baby like Finn; that to so many people, Finn embodies something awful and nightmarish to them. The worst thing that could happen.
Obviously what is needed is a global shift in the way people view people with Down syndrome. And that’s what I try to contribute to – that shift – by blogging about Finn, and showing people that this is a good life.
But sometimes it feels futile. Will people ever get it?