Hi. Long time, no see. Yeah, I’m still here. My husband’s work schedule means I’m alone with the kids all day–kids who are acting out because they miss their Daddy– so by the time they fall asleep, I’ve basically passed out on the couch. This blog isn’t the only thing I’ve ignored. My makeup hasn’t been properly removed in about two months, which is just… yikes. And I’ve had an ear infection I waited 3.5 weeks to treat, only to be told I’ll need many other appointments to get to the bottom of things. Those appointments won’t be happening, because my husband’s work schedule means I’m alone with the kids all day…… You see where I’m going with this.
Anyhoo, things are coming. I’m currently reading Grief Workbook for Skeptics by Carol Fiore. She’s the widow of experimental test pilot Eric Fiore. Now I myself am not a pilot, but I grew up in an aviation-obsessed family. I know every line from The Right Stuff (the movie, not the book) and follow Chuck Yeager on Facebook, so that’s about all I bring to the table. My uncle was a navy pilot, shot down while flying an A-1 Skyraider over Vietnam. He survived and spent 7.5 years as a POW. My brother can fly and is an amazing aviation photographer, when he isn’t being a lawyer and musician (the talent in our family was not evenly distributed). So, grief, atheism, flying… Had to pick up a copy. Look for a review soon.
Lately, I’ve been pissing people off by not “liking” seemingly like-worthy stories, like the one about the family who created a bucket list for their unborn baby with anencephaly. Many of my friends thought that story was moving and inspiring and offered their prayers. I thought it was kind of selfish and cruel. And tragic, of course. Difference of opinion. Some people think it’s best to bring a brainless, skull-less baby into the world so he can be baptized and die four hours later. Some people think what’s in the best interest of the baby is to end things before the poor thing grows larger and and is born struggling to survive.
If you search for anencephaly, you’ll find lots of pro-life families blogging about their perfect miracle babies, often saying their children did more in a couple hours than they had in their entire lifetime. Get real. That has nothing to do with the child. The child, formed without the basic systems in place for survival, hung on for a couple hours and then died. It didn’t aim to inspire a community. It could not hear or see or feel pain or think. It didn’t appreciate having been brought to a concert as a fetus. Its body struggled to live and then stopped, and that’s it. And that’s AWFUL. I am not unsympathetic to these families. It’s a rotten thing. But I fail to see how any of this is for the baby. God doesn’t make mistakes, they say. They’re right. God didn’t make a mistake. Something went wrong and the fetus didn’t form properly. Sometimes malfunctions occur a week or two into the pregnancy, and a miscarriage results. Sometimes we don’t know something’s wrong until testing shows it, and then it’s our job as parents to make the tough decisions.
Would these parents carry any baby to term? Would anything change their minds? What if the baby was going to be born without a head? I’m not saying you can’t love a baby without a skull. Of course you can. You can love it enough to spare it from developing any further. That, to me, is just cruel. In fact, it seems superficial. They’re photographing, holding and baptizing a shell. So just because the body looks almost right, the fact that there is no one in it is immaterial? The majority of these babies are stillborn. Some live only a few hours, as the brain stem is incapable of reminding the body to breathe. This slowly deprives the organs of oxygen, and the body officially dies. I’ve seen so many people responding to this condition by saying, “Still praying for a miracle.” There is no miracle. No amount of praying or medical assistance can help a creature without a brain. Just because the baby is born looking somewhat baby-like, does not mean it’s a person capable of thought or love or life.
I’m not saying parents shouldn’t be allowed to choose to bring these babies to term. That’s a personal choice, one about which I have a personal opinion. But you know what I never see? Any of these parents mentioning the role of folic acid in reducing neural tube defects. If the goal is to inform and inspire and bring something good to the world, why not educate people on how to prevent some of these defects in the first place? Shouldn’t that be priority number one?
So no, I won’t “like” that, even if it makes me seem heartless. Maybe I am, but at least I’ve got a brain.
Low blow, right?
Yeah, see that’s the problem. I’m not entirely heartless. I don’t hate those parents. I don’t want them to feel more pain. A part of me wants to erase this whole thing because I know it will come off as nothing but negative and nasty. I mean, what does it matter if they want to continue their pregnancy and tell the world about their trips to sporting events and praise God for helping them on their journey? What harm is there? Prolonging the child’s life probably isn’t prolonging pain, because the child cannot feel pain. And it seems a little undignified, but the child can’t experience dignity or embarassment or love or anything else. So where’s the harm? If it brings the parents joy. If it makes the experience more meaningful to the parents. Why even have an opinion about it? Why not just shut up and let people live?
And the same with grief. Why ruffle feathers? Why not let people believe the stories that make them happy? Other than my fall back position that ignorance is wrong and detrimental to the species, why even go there? Why not quietly live my life and stay out of it?
Sometimes I don’t know. I do feel a need to speak out when religion is hurting people or preventing them from having equal rights. But why here? Why express an opinion at all?
Then I read a post on a grief site. A grieving son was reading his mother’s diary where she had written that she didn’t understand why her prayers weren’t working, why she wasn’t worthy enough for a miracle. Devastating, right? My great-grandmother, in her final days, would grumpily say, “Why won’t He take me already???”
These are people who were not helped by their faith. These are people who, while dying, felt frustrated, confused and angry. Their beliefs didn’t comfort them. They make them feel unworthy. And I think that’s the way things are going. I think more and more people are feeling let down by the promises of their faith, and if that’s true, then shouldn’t we start getting real about this so we can evolve as a community and find better ways to offer real support and comfort to those in need? My heart breaks for those who are suffering quietly, confessing to their diaries because they dare not share their feelings with other Believers.
Maybe it IS harmful to keep your opinions to yourself, even if they rub some people the wrong way. Maybe saying, “Hey, if you find out your baby-to-be will immediately die and never have any kind of meaningful life because it won’t have a brain, you’re allowed to terminate the pregnancy without insulting God” isn’t negative and nasty. Maybe it’s the kind of honesty we need. Maybe some people need permission to make the tough choices. Maybe they need to know that 1) the situation they’re in wasn’t God’s will, and 2) they are ALLOWED to make a choice. A friend said she thought the parents were better people than she because she didn’t think she’d carry the baby to term. Why is that the better choice? Maybe if we take God out of the equation and admit that life is delicate, and sometimes random awful things happen to us just because, and admit that that’s kind of a scary realization, then we can go on with the business of finding realistic, humane ways of handling these situations. Maybe then, once we’re free of fantasies and superstitions, we will look at what IS and confront obstacles courageously and realistically, empowered with the knowledge that we can rely on one another and ourselves to make the best of any situation, and still live meaningful, beautiful lives.