I’ve heard for years now – since Finn was born – about the high percentage of women who terminate their pregnancies upon receiving a prenatal diagnosis of Down syndrome. There are conflicting reports about what the actual percentage is, but I think it’s safe to say that it’s pretty high. Because of the numbers I’ve heard, I’ve wondered many times over the last few years if I actually might be acquainted with anyone who has terminated a pregnancy because of Down syndrome. It’s a morbid curiosity, and a question I have never really wanted answered.
And yet, sometimes strange things happen in life. Lives intersect, and people cross paths unexpectedly. If by chance I were to cross paths with a woman who terminated a pregnancy because she received a prenatal diagnosis of Down syndrome, this is what I would say to her:
I support every woman’s right to choose, but in my heart, I can’t support every choice. What you experienced was not a loss – calling it a loss is not being honest. It was a choice – and that choice, on some level, is a rejection of my son and all people with Down syndrome; it’s a validation of the notion that my son’s place in the world is not a given. You cannot make the choice you made and then try to be one of us – the parents who made a different choice, the parents who fight so hard for our children to have a place in the world.
I think your desire to look into my life, and the lives of other parents of children with Down syndrome, is misplaced. I think it will make you hurt. If you are hoping to see hardship and sadness so that your choice can be validated after the fact, I think you will be crushed with disappointment. Because the truth is, my son is not a tragedy or a hardship, and our life with him is not sad. He’s just a little boy, and we are just a family, and this is just life. We do not regret having him, nor do we regret that he has Down syndrome. It just is. Our acceptance of our son and all the manifestations of his extra chromosome is not evidence that we are extraordinarily strong; we are only human, just like you. We laugh, we cry, we celebrate, we get frustrated. This is just life. And I think you will see all of those things in other families with a presence of Down syndrome, too.
I think you will find that life has no guarantees. If your choice was made out of fear of what might have been, all I can say is that what might have been might have been wonderful. Anything can happen at any time in anyone’s life; Down syndrome is not the worst – and certainly not the only – thing that can happen. But you’ve already made your choice, so there isn’t any point in my trying to explain the relative futility of that choice if it was made in an effort to keep life simple and happy and tidy. Life is messy. You should probably try to learn to embrace that.
I suspect that you are struggling to come to terms with your choice. I won’t condemn you, but I cannot offer you comfort or solace, either. Yours is a path you must walk alone; only you can find peace. I hope you do find it one day.