I am, as many who have been reading my blog for any length of time know, atheist. This seems to be somewhat unusual in general – at least in my community where Christianity runs rampant – and even more so in the Down syndrome community I have become a part of online since Finn was born almost four years ago.
I grew up Lutheran . . . whatever that means. My mother took me and my brothers to church sporadically. My dad never, ever went with us. He was, I believe, agnostic, and also being the ’60s throwback rebel that he was, he made plenty of irreverent jokes about the “Jesus freaks” and the “Holy rollers.” In any event, Christianity did not play a huge part in my upbringing – and yet, I grew up with steadfast beliefs: that it went without question that God existed, and that he watched my every move (and I had plenty, therefore, to feel guilty about), that I must confess all my sins daily via prayer (most nights while I prayed, my mind would wander and I’d inevitably fall asleep mid-prayer, which necessarily had to be added to the running list of “sins” I must confess the next night), and that even so, on Judgment Day, I would have to stand and face God and answer for every single wrong deed or thought I had ever committed in life. I don’t remember ever getting any sense of comfort from my beliefs. Sure, there was the promise of the afterlife, but one wrong move could land me in the fiery pits of Hell, and even if I ended up in Heaven, the idea of eternal life – even in paradise – freaked me the hell out.
In my adulthood, I tried a number of different churches, trying to find a sense of belonging, searching for that special something that would fill the void I carried around inside of me (the void I later realized was depression). I never found it, and in fact, eventually abandoned organized religion altogether, so appalled and offended I was at the hypocrisy and judgment of these mere mortals (“Love your neighbor . . . homosexuality is sinful . . .”). Still, I clung to my fundamental beliefs, insisting that one could have a relationship with God without being part of some man-made religion.
Eventually, though, my beliefs began to fall away. I had always had questions that I mostly just swallowed, but there came a time when, on some subconscious level that I only recognized later, I began to allow the questions to take shape, and I began to explore them, believing, I think, that whatever faith I had might be made stronger by being put to the test of rigorous questioning. It didn’t, however. The more questions I had, the less sense the so-called answers made, the more it all began to resemble folk stories, myths, and fairy tales, with no substance to back it up.
It was a process. I went from calling myself a Christian, to then agnostic. But even that felt dishonest – it wasn’t really that I wasn’t sure. Finally, only about five years ago, I let go and called myself atheist. I don’t believe that any god or divine force exists. I don’t believe there is anyone or anything looking out for any of us. I don’t believe there is any afterlife; while I do believe in the “soul” in the sense that every person has an “essence” that makes them them, I don’t believe in a soul that is separate from or survives the body. When you’re dead, you’re dead.
And you know what? When I finally allowed all those old beliefs to fall away, I felt a weight lifted. I felt free, and at peace. And I realized that this life – this one life I have to live – is even more precious than I had thought before, because it’s all I’ll get. Those feelings of peace and liberation remain with me today.
So how does this all play out in raising a child with a disability?
Everyone approaches parenting – of any child, with or without disabilities – from the perspective of whatever beliefs and philosophies they hold. I’m no different. My perspective just seems to be different from a lot of people’s when it comes to matters of faith.
The religious, I have found, seem to have a need to find divine meaning in things. Many believers in the Down syndrome parenting community believe that God has given their child to them – specially chosen – to teach them some great lesson, or to use as a tool to teach other people some great lesson. Some believers believe that having a child with Down syndrome is a special blessing; other Christians believe it is a punishment on the parents for unrepented sins. Some of these views infuriate me because of their dangerous ignorance. Some irritate me for the same reasons that many Christian views irritate me – views that have nothing at all to do with disability, but rather a propensity to foist one’s beliefs on others.
As soon as Finn was born, I felt bombarded by Christian sentiments. “Do you have the Lord?” I was asked. (As if “having the Lord” was necessary to cope with the awful tragedy of having a child with Down syndrome.) “God never gives us more than we can handle,” I was told. (An empty platitude if I ever heard one; plenty of people can’t handle, as it turns out, what life throws at them – that’s why there is suicide.) “God gives special children to special parents,” I heard over and over. (Really? Even in Eastern Europe, where babies born with Down syndrome are still routinely institutionalized?)
Life is random, that’s what I believe. Nobody and no thing is in control behind the scenes – and that realization allows me the freedom to accept Finn without the weight of anger at some divine entity for burdening my son with a disability, and without the sense that I am expected to utilize Finn to get some dogmatic message across to anyone. I believe that sometimes, in the dance between egg and sperm, in the delicate division of cells and chromosomes, something out of the ordinary happens, and a child like Finn results. Life and parenting themselves provide innumerable opportunities for growth, for soul-searching, for learning profound lessons; there is no need to attach anything divine to it. We can take whatever meaning we choose from every single experience we have.
My faith lies in science – to better understand Down syndrome – and all other disabilities – from a clinical standpoint, so that individual lives might be better lived. My faith lies in humanity, and people’s ability to see beyond outward appearances, to embrace diversity, tolerance, compassion, and inclusion.