***Disclaimer...This is NOT a judgment on parents who have terminated pregnancies for reasons I wouldn't have. I am so sorry for those parents who have had to face this decision and I understand how hard it is to make because I'm there now and it sucks. This post is an extension of my own grieving inner monologue. In addition to parents who've terminated for reasons I wouldn't, I'm also angry with cranky pregnant women, women with newborns who look annoyed and my own children who get cranky with me for being sad. None of these are logical or lasting so please do not take any of this personally. This is grief talking, and it ain't pretty.
A time to decide, a time to heal. That was the name of one of the books the genetic counselor gave us after we found out about the holoprosencephaly and that, for our baby, it was "incompatible with life."
The copy we got was just that, a photocopy of a book, we could occasionally see a pair of very hairy hands that were holding the pages in place on the copy machine. Nice watch though. I read the book in one day (its not very big) and cried through most of it. I read story after story written in parents own hand of their decision and how they dealt with it.
Many parents talked about how healing it was to hold their baby after the pregnancy had been terminated so that they could say goodbye and know that their baby was real. They name the baby, have them baptized, dress them, take pictures and hold the little life that never quite made it.
There were many different diagnosis that prompted the termination of these pregnancies. I found myself angry with the parents who terminated for reason's I wouldn't have. The babies with downs syndrome or sever retardation that I would have kept but they didn't. Those parents were given the option of life, I wasn't and I'm angry about that. I'm angry because I would kill to be able to have my baby alive and see them look at me with the flicker of recognition and trust that my previous babies did. I'd kill to have a baby who had a chance at life, no matter the state of that life. I'd love to be learning how to live with a high needs child and how to make their life the best I can. But those are not options I have just now. The only option I have is death now or death in six months. All I get is "incompatible with life."
So I'm angry at those parents who had life, and threw it away. They took the precious life they had and decided not to take it because it wasn't perfect and wouldn't ever be.
I understand that quality of life weighs into this decision and that parents don't want to cause their children suffering and sometimes it just seems easier to end a life before it really begins than to deal with the imperfections. But from where I sit now (and I'm sure this will change because everything does) I just can't understand not being overjoyed because at least your baby had a chance. There was a chance for life. From one who is incompatible, that seems like a lot.