It’s funny how I got to a point where this whole Down syndrome thing was so not a big deal anymore. So much so that I put Finnian’s Journey out to pasture and moseyed on over here to a brand new blog where Down syndrome would only have occasional cameo appearances because it was just no longer the focal point of my life that it once was.
And yet here I am, focusing on Down syndrome. Because every once in a while, it has a way of kind of slapping you in the face.
I’ve known for a while that some new, better prenatal screening is out there that lots of articles are being written about – one that detects Down syndrome even earlier, making it that much easier to terminate said pregnancies. I have my feelings about it, but I’ve refrained from writing much about it myself because I do happen to have very mixed feelings about abortion in general, but mainly because I find the termination rate of prenatally diagnosed cases of Down syndrome so horrific that I can hardly wrap my head around it. And so, because I find it so overwhelming to even think about, and knowing that ranting about it isn’t going to change a goddamn thing (“progress” cannot be undone; advancing technology cannot be undone; once the knowledge and ability is there, there’s no going back), I usually make a conscious choice to focus my energies where I can and do make a difference: in my family. I focus my energies on loving Finn and ensuring that he is healthy and happy, and I try to present our life publicly as honestly as I can, with the hope that people out there who might take note of our life, will see that it’s a far cry from bad.
Still, every once in a while, Down syndrome has a way of slapping you in the face. Finn is fine, he’s great . . . but lest I ever make the mistake of thinking that the world is an accepting place, there are always the people who catch me off guard by saying “retard” or “retarded” to me. This past weekend it was the woman who has been cutting my hair for the last seven years. She knows all about Finn, and there I was, in her chair as she cut my hair, and we had a lovely conversation about Finn and Down syndrome, and an aunt of hers who has Down syndrome, about tolerance and compassion, and then there it was, she blurted out “I’m such a retard!” I was stunned. Too stunned to even react. I left and cried in my truck. Then there are the people who remind you that terminating a pregnancy in which the baby has been diagnosed with Down syndrome is understandable. And you know what? I don’t want to judge, I really don’t. Who the hell am I to say who should or should not man up and take what they get? A woman’s decision to follow or not follow through with a pregnancy is hers and hers alone – I’m not going to be raising her baby or walking in her shoes, so who am I to say? But you know what? What really hurts about it is just the fact that it’s spawned from an attitude that children like my son are mistakes. Errors. Defective. Unwanted. Undesirable by society. It feeds directly into the environment of intolerance he will grow up in.
I’ll say it again: the hardest part about having a child with Down syndrome is knowing that he was born into a world that does not welcome him.
So I advocate. I get on my soapbox and preach about acceptance and tolerance and kindness and compassion. I talk about how Finn’s life IS worth living, how he is NOT suffering, how he has so much to offer – more than we even know yet. I show our life to people because I want people to know that it’s a good life we have – a very good life. Finn doesn’t hold us back, he’s not a burden, we do not live under a cloud of sadness. And that’s the truth.
But there are more truths. Like the girl I saw at the doctor’s office this morning. Finn is getting his second set of tubes in his ears later this week, so I had to take him to the ENT this morning for a pre-op checkup. While we were in the waiting room, a woman walks in with her daughter – I’m guessing mid-teens – who had Ds. They sit down and the girl starts sneezing, and she’s not covering her face, and she’s sneezing everywhere and there’s snot all over her face, and her mom is grabbing tissues and helping her blow her nose. It wasn’t pretty. So I’m thinking, “Great. Is that going to be Finn? Not even able to cover his face when he sneezes or wipe his own nose? What else of his am I going to be wiping when he’s fifteen?” And it put me into a funk, the very funk I’m sitting here wallowing in now.
I try very hard not to think too much about the future. I’ve been walloped by enough curveballs in my life to know that trying to guess the future is folly. I try to just focus on today. Maybe next week, but not too far beyond that. Sometimes I do catch glimpses of a possible future (Michael and I both picture tooling around the country on roadtrips in a big ol’ RV – me, him, and Finn, a threesome), but I don’t dwell on those pictures too much, because who knows what tomorrow will really bring? I do know that my glimpses of the future do not generally include a grown son who cannot wipe his own nose. I know he will have limitations, I know that. But that was a slap in the face I didn’t particularly need today.
Later in the morning I ran an errand at an outdoor mall, and I saw yet another individual with Ds. He was probably in his twenties (hard to say, though it really doesn’t matter), and he was with two other people (siblings?), and he was carrying a chili dog and laughing and just having a good old time. I liked that. That made me feel good.
So what’s Finn going to be? The sneezer or the chili dog guy? There’s just no way to know.