When your child is brain dead and you decide to donate their organs, there comes an actual moment when you walk away from them forever. They’re in the hospital bed, breathing (with assistance of a machine), heart beating (on it’s own accord–that’s a rough one), and you say goodbye. You get in your car and drive off to a brand new existence, one that you can’t even imagine yet. Meanwhile, they stay there, without you. Do they know you’re gone? No, I don’t think so. But you know it.

The day after we did that very thing, I had to call my daughter’s preschool and tell them that our son had died. I didn’t tell them that his heart was actually still beating that day, that he had one more day of heart-beating status. I couldn’t go there. I told them that we were out of town, that my son fell back in a chair, and that he died. That one sentence story has become my script for when I have to tell people what happened in just a few seconds. While on the phone, I was standing in my mother’s back patio so my daughter wouldn’t have to hear this conversation. I was put on speaker phone in the school office. I noticed because the next words spoken on their side were echo-y and radio-like.

“Oh honey, he’s fine! He’s an angel now!”

About a million “what the fuck”‘s went through my head. I’m lucky in that I haven’t heard that again since that moment. I couldn’t even believe that of all the possible comments that could have come out of that person’s mouth, they chose that one. I was astounded at this woman’s complete inability to respect what I had just said. I was thrown a platitude less than 24 hours after I’d left him. If you want to bring God into the mix this early with someone who has lost a child, the only reasonable response is this:

“JESUS FUCKING CHRIST!!!! WHAT?!?!?!”

Let me be clear: I’m not an atheist. I’m not even an agnostic. I believe that there is more to this universe than we can perceive with our tiny minds. I think if anything is a sin, it’s the presumption that we actually know the answers, and that our story of religion that we were taught is the right story and that other people who were taught religion somewhere else have the wrong story. When it comes to faith, smug confidence is a bit of a naive way of moving through life and the world.

While I feel confident in my belief system that we can’t possibly know what is beyond our realm of understanding, this “faith” is not that comforting when you lose a child. There is absolutely nothing I would love more than to know that Jay is actually somewhere being taken care of by my mother and all my other relatives. To be reassured that he really, truly is fine and happy and that I would see him again would be nothing short of utter peace.

I know plenty of people who completely believe this to be true. And why not, right? If you have that faith, keep it. I’m not here to tell you it isn’t true. You might be right! I’m just not wired that way. A lot of us aren’t wired that way. When you don’t have faith, you’ve got to find something else to hang onto, because without God, things can get pretty bleak. Without that extra foothold, it’s pretty easy to go down a rabbit hole.

How do you move through the world without God when your child is dead? Do you feel like you need a story about where your child is now, or are you OK with the idea that they simply ceased to exist, their soul/personality/spirit is just truly gone?

For those who have complete faith in heaven and Jesus Christ, I call that full fat God. They drink the whole thing down and it’s the best tasting God there is when you’ve lost a child.  Your child is sitting on Jesus’ lap and they’re having an awesome time. Other parents who aren’t as religious, but still believe in God, might not be able to drink down full fat God. They go for Diet God, meaning they believe in an afterlife, but maybe the pearly gates and stuff is going a little bit far, but in the end they hope to be reunited with their lost loved ones. These are the “spiritual but not religious” folks, the “Nature is God” club, or any other philosophy that basically says, “I believe in something, don’t know what it is and I’m OK with that.”

Then there’s God Zero. There’s no afterlife. When you’re dead, it’s like a switch on a robot. You’re off and you’re not coming back on.

I have a hard time with the concept of things being gone. Where did it go? I wrote this post last year about the idea of things just being nowhere. It’s one of those questions that will bob around my head for the rest of my life. Maybe a scientist could sit down with me and plainly explain how something like the essence of a person can cease to exist, or maybe just someone with more than a 2nd grade understanding of biology, like myself.  I don’t think I would listen, though. I can’t. I want him somewhere so bad. I don’t know where he is, whether he’s in a heaven, or floating around as energy in a billion different tiny places at once. I don’t want to know the science of it, and I can’t imagine him sitting on God’s white-robed lap. But I want him around too bad to be fine with him being nowhere. I understand why people find God after losing a child. It’s a much needed dose of hope and reassurance that, after all that’s happened, things are still OK. That’s what we as humans always want to believe, isn’t it? I can’t drink God Zero. Gimme some of that ice cold Diet God.