another loss blog

I haven't posted anything here for awhile. Not that I haven't written anything; but H.'s high-risk second pregnancy and a variety of entertainingly awful things happened last fall. I just couldn't summon up the necessary emotional fortitude to post on the loss blog.

But recently...I became involved in an online discussion about vaccines, and the possibility they may cause autism. As the parent of a deceased child, H. and I have a certain set of opinions about things that are dangerous to children. H. and I are of the opinion that even if it were scientifically proven that vaccines carried a chance of autism (it hasn't been; the recent study the anti-vaccination movement has been roundly discredited), we would likely still inoculate any future children. Why?

Because we would rather have an autistic child than a dead one. While we were in what grief specialist and therapists call the "Bargaining Stage", we watched our lifeless child being kept alive by machines, and talked about how much brain damage would be ok. Not autism, but actual and substantial damage to the ol' puzzler. We, after hours of tears and pain, decided that our criteria would be this: Could our child ever enjoy a birthday party? Or cuddle a pet? We would take it. One smile? One moment of joy for the child? Ok. We will take our son home, and change diapers, and do everything we can to make sure he is the happiest little boy he is able to be. AND WE WILL LOVE HIM!

I understand that not everyone has that opinion. And that's fine. However...I'm about to show you an opinion crossing the line. No, not THE LINE. Many lines.

There was a person who also was participating in that 'discussion'. A person who, more or less, said that a dead child was better than the autistic child he had. He claimed that "within an hour" the vaccine turned his son autistic. I said I was sorry for his troubles, but I just couldn't agree that a dead child was better.

I received this as a private message from that person. I have removed his name, because I don't ever want his child or wife to know how he feels about his child. This is the kind of shit that bereaved parents have to put up with from people who just don't get it.

Also...it's great that you and your lady got over your miscarriage. All I could think of was the Hitchiker's Guide to the Galaxy, and Mister Prosser giving Arthur the "Well, They Knocked My House Down, Too, You Know" speech.

TERRIBLE PARENT OF AN AUTISTIC CHILD:
My girlfriend miscarried when I was young, Andy, and I went through a lot of grief then. Over time that wound healed. But everyday is a funeral with moderate to severe autism, every day you are reminded your son will never experience love, family, independence, friendship.. will never have a conversation, will never philosophize, drive, vote, get married etc.

Every day you fight back the tears, clean up the messes, get on with the daily fight back the tears, clean up the messes, get on with the daily activities all the while wondering how long it will take, after you die, for the state to lock your only child up in some institution and lay claim to the home you've left him. You worry that someone will abuse him because they know he cannot tell a soul what happened. You worry that he will hurt people when he get's bigger, you see the rage that builds in a person who cannot communicate and does not understand the world around him. In a way, my son died when he got that vaccination. His future died, the person he was on his way to becoming died. What's left is a bitter mockery of what should have been.

If you still think I have it so good, go and try to have a conversation with a goldfish, try to instill your parental wisdom into that fish and lay your hopes and dreams for that fishes future out and try to make it understand you, stay around that fish for 10 years waiting to hear it say "I love you daddy". I'm not going to say I'd rather he died than develop Autism, but I would have preferred the slim chance of death by illness over the grim certainty of "life" with autism. We are both heartbroken, we have both been cheated and we have both lost so much. I respect you for putting your personal life out there to try to raise awareness, that is all I was trying to do myself. I'm done with that thread but I wanted to write you to say thanks for being brave and let you know I'm not ignoring your comments.

My response is below. Yes, I could have been nicer. You know what though? I could have been a lot fucking meaner. Your autistic son is a goldfish? You suck, man. You really suck.

ME, TRYING NOT TO HAVE A HEART ATTACK:

"I am sorry for your sons' troubles.

Nothing. I repeat NOTHING is worse than holding the corpse of your child. Never getting to see your children's eyes open. I am really trying hard to not be furious with you. Miscarriage? Is horrible. But your child dying at exactly his moment of birth?

I would trade you hands in a second. I would love every moment with my child. Instead of moaning about the future, I would take the present.

I would take one moment of living happiness OVER THE METAL URN THAT HOLDS THE ASHES OF MY SON.

I'm genuinely sorry for your sons' troubles...I really am. But, with all sincerity and from the bottom of my heart, fuck you. "