So, I’ve been sort of halfheartedly starting a nonfiction project about the evolution of my religious beliefs – how I became a Christian, how my theology changed, struggles I’ve had along the way, etc. This will probably not be finished or published in a long time, since I’m working on a deadline for my first novella right now (as well as trying to start an online arts magazine). However, I thought I’d post the first section of it here for you all to check out. Bear in mind that this section is not a happy one, and in fact is very tragic and saddening. So read at your own risk!
When my wife was getting her master’s degree in Speech Language Pathology, part of her work was to observe clients in a clinic. People would come into the clinic from all ages and races; people who stuttered and lisped, children who were late developing critical speech skills, or children with debilitating physical or social disorders who needed extra help in communicating. But the most harrowing and terrifying and anger-inducing story that I ever heard was about the parents of one of my wife’s clients, one of whom was a nurse at a local care center.
These people had a baby, and for a while everything seemed great. The boy was developing wonderfully, and he was understandably the light of his parent’s eyes. Then, out of nowhere, the baby started having what are called Infant Seizures. He was four months old. Imagine the horror of this for a moment. I think the phrase “a parent’s worst nightmare” is thrown around way too much in our society. It’s used for things like your daughter showing up with a boy whose moral code is slightly less than that of Jesus. But imagine for a moment that you wake up one night to find your baby having a seizure. Imagine realizing, after all these months of everything seemingly going according to plan, that your child is having seizures. That something is going terribly and utterly wrong in his brain. That there is literally nothing in your power that can be done to correct this. And that perhaps this has been going on unnoticed for quite some time. This is your child, your life. A being for whom you are completely responsible. And yet there is nothing you can do. Now imagine that you have the sufficient medical knowledge to know all the possibilities of what could be causing the problem – and all the possibilities of skills and developments and important personality characteristics that could be lost, that could be getting destroyed from these seizures. How would you feel? What would you do?
The parents took the child to doctors and tried all sorts of cures and therapies until they were left with only one. The seizures had been isolated in one half of their son’s brain, and so the only option left to these people was something almost so unspeakable that it is physically difficult to type it out here: the doctors suggested the highly dangerous treatment of removing that half of their son’s brain where the seizure were occurring. Would this cause damage? Yes. But it would likely cure the seizures and prevent the other half of their son’s brain from being damaged. When I say this must have been a difficult decision, the words seem paltry and ridiculous, since for most of us a “difficult decision” is which college to attend, or which movie to watch on the weekend. This is a decision about removing another human being’s brain, and is thus tied up with all kinds of other decisions like “what do we do if this puts him in a vegetative state?” or “how do we manage to live with ourselves if the procedure kills him?” But the parents decided in favor of the medical advice and the probabilities – like I think any parent would after exhausting literally everything else. And the boy survived the surgery and came out just fine, minus half a brain.
The real tragedy here is not the difficulty of the decision, or even the removal of half of the kid’s brain. The real tragedy is that afterwards, the seizures came back. Only now the parents had no options left, their son had been hemispherectomized with their consent, and he was still experiencing seizures. Try to imagine your life like this. I do not want to do any disservice to the parents – who I am sure do not want our pity. They are, I am sure, wonderful people. They sure as hell proved that they are sacrificial and tough-decision-makers. And, for me at least, they sure as hell proved that they are good parents. They had to sleep with their child every night and hold him when he had his nightly seizures so that he wouldn’t hurt himself or swallow his tongue, or any other number of terrible things that he could do to himself while seizing. Imagine this. Not getting to sleep in the same bed as your spouse. Imagine trying to speak soothing words to your child as he goes through a seizure, all the while feeling so angry and depressed and guilty inside. Yes, guilty. Imagine the guilt. I’m not vilifying the parents in any way. Nor am I suggesting that their decision was the wrong one. What I am saying is that the situation itself provides no way to not feel guilty: I would have felt guilty having my son’s brain removed, and I would have felt guilty not having my son’s brain removed and letting the seizures go on unchecked. But now, through no fault of their own, the parents have to live with ordering a hemispherectomy on their child to no avail. It is literally the worst of both sides. And so yes, I think there would be guilt there, regardless of whether or not it was deserved.
My wife told me this story shortly before my own son was born. I think it was the first time I ever seriously doubted the existence of God.