I’ve bounced back and forth a lot on whether or not I want to have children. I’ve always wanted them deep down in my heart, but I often found myself musing about what the moral and practical implications of having children would be, on a hot, crowded planet where they would be born consuming considerably more than a child born elsewhere in the world, how to select the father, whether I could give them the love, nurturing, and strength necessary to survive in this world as Jewish autistic children born to two women, whether I could afford, monetarily and emotionally, to raise them, and whether I really wanted to be a parent or if it was just a combination of external pressures and rationalizations.
One thing that I’ve never really discussed with anyone though, is the one fear which lurks in the back of my brain: The fear of finding out that my child has Tay-Sachs disease too late in the pregnancy to terminate it.
Tay-Sachs disease, for the unfamiliar, is a scourge among Ashkenazi Jews, which has almost been eliminated, but I fear I may be a carrier of it, owing to relatives on my paternal side of my family who had children that potentially died from it. There is no cure for Tay-Sachs disease, and for those who have it, there’s nothing to look forward to but a slow, painful death which will come at age 4, if not earlier. One woman, Emily Rapp, wrote a painful account of struggling with watching her son die of it in the New York Times.
I haven’t had a genetic test to determine my carrier status yet, but the thought of somehow missing out on the prenatal testing, getting pregnant, and birthing a baby with TSD gives me nightmares. I could not go through watching my own child die in pain and anguish. There is nothing I could do or say that would comfort me knowing that I brought someone into the world with the promise of a life that’s so short, torrential, and painful upon them.
That worry is always with me when I contemplate the possibility of becoming a parent. But as horrifying as it is, and unlikely as (I hope) it is, thinking about it offers me a chance to think through what happens if things do not go according to my own pre-set plans. As a disabled person myself I have a considerable amount more flexibility than most when it comes to imagining the outcome of parenthood, knowing that my children will likely be autistic like me and will face battles neurotypical children will never know.
But if my children are in some way different than what I anticipate, such as having a physical disability of some kind, or what else exists in the field of human variety, I am trying my best to learn to accept it with an attitude of love and possibility. Like any potential parent, I project a lot onto what these future children may be like, but I am trying my best to learn to step back, and see it as not what I hope my children will be like, but what kind of parent I will turn out to be.