The Other Anger

I had mentioned in a prior post that I would talk about an anger at a particular thing that has stayed with me longer than any of my other anger issues. That is my anger at god.

I was born and raised a good Jewish boy. My family was not particularly religious though I know that I had a great-grandfather who was a marvelous cantor back in Russia. I would probably be described as a reform Jew growing up. I didn't go to temple every Saturday, but I did attend a Yeshiva for Kindergarten. I was circumcised (when I was 4, and yes, I do remember it). I went to Hebrew school and I read from the Torah for my barmitzvah. I went to Temple on Yom Kippur. I also fasted on Yom Kippur. I didn't eat bread on Passover. I followed the really big rules but ignored most of them. There was no way I was going to be Kosher, I love sausage and bacon too much.

As I got older, my minor religious beliefs waned. I started to think of myself as more of an agnostic than as a reform Jew. Did god exist? Who knows? I couldn't answer it one way or another. But out of respect to my parents, I continued to participate in the Yom Kippur and Passover rituals.

When Melissa and I got married, we had a Rabbi officiate the wedding, though we had a reform style ceremony (Melissa did not circle me 7 times). Most of the ceremony was in English but with a little bit of Hebrew thrown in.

And then we had Dylan.

How could God allow this to happen to my son? How could an omnipresent, omniscient, omnipotent, being do something so horrible to this beautiful baby boy. Where was the love for humanity that god is supposed to show. How could god do this to this beautiful innocent baby boy.

How could I believe in or pray to a being who would do something so horrible, so evil. After thinking on this topic for some time, I realized that there were only 3 possibilities for god.

1. God intentionally did this to my son.

If God intentionally maimed my child, intentionally made it so that he would never walk or talk or be able to show true emotion, then he is an evil horrible monster. No different than any murderer, pedophile, or rapist in all of human history. No, he is worse than all of them combined. He has intentionally maimed hundreds of millions of human beings.

Does he do so for some perverse sense of pleasure or does he do so to send the rest of us a message. If he does so to send us a message, that is like me maiming one of my children so that the rest would behave well. That would be the act of a maniac. Only a truly evil piece of garbage would do such a thing. If this is what god does, why would I ever believe in such a thing, let alone pray to it. It would be no different than praying to Hitler or Stalin.

I know what some people who read this will say. "God works in mysterious ways". That to me is just a cop out. Its like the people who defended Mussolini, because he made the trains run on time. If god is such an amazing being, he should be held to a much higher standard than the ones we humans give to ourselves. Instead, he is given no standard whatsoever. We hold people in authority to a higher standard than we do the general populous. Shouldn't the ultimate authority be held to the absolute highest standard?

I look at Holocaust survivors and wonder how they can stay religious. In some way, I can understand that. God supposedly gave us free will. Therefore he does not control the actions of our fellow man. Thus they can maintain their beliefs, because god did not do it to them, god did not want to do it to them. It was through the evil of other free willed individuals that they suffered. Therefore, God cannot be held at fault for the Shoah. Thus they can maintain their faith.

This argument doesn't work with a new born child. Dylan wasn't maimed by a negligent doctor. His mother didn't smoke crack while she was pregnant. His father didn't beat the mother to cause some sort of birth defect. Every human in his life did everything they could so that he could be a happy healthy normal child.

The only being in his life who harmed him was god. If that is the case than I can only feel hatred and scorn and venom towards someone who would do this to my child.


2. God neither has the power nor the interest in us.

This assumes that God might have been the creator of the universe, but pretty much since the big bang, has shown either very little or no interest in humanity. God simply does not care about us.

Much in the same way that I don't particularly care about the single celled organisms that might exist on my hands. When I wash them, I might be killing these single celled organisms. Do I even consider their lives or their fate for even a second? Of course not. What is a single celled organism to me and why should I bother caring about it.

So in the same way, God is so much above us, that we are simply too far beneath his notice and he simply does not care about us. The best analogy of this was the ending to the movie "Men in Black", where they show that our entire universe is just some child's marble. What is the point of praying to or believing in such a child. The child doesn't care in the least about me, so why should I care in the least about it.

Its like paying rent to an absentee landlord. The landlord neither expects the rent money or cares if they receive it or not. Your payments make absolutely no difference whatsoever. So why bother paying, or in this case, why bother praying or believing.


3. There is no God.

There never has been a god. God is a fictional creation of man to give us comfort from the things we don't understand. There is no grand creator. There is no master plan. There is no one for me to pray for. There is no heavenly being for me to believe in. There is no heaven. There is no hell. There is just the here and now.

There is no one for me to blame for what happened to my son. Shit happens. Life and the Universe is just about coincidence. Dylan having Emanuel Syndrome was just one of those coincidences.

This is the belief that I finally accepted. For me to accept the first 2 would have kept me in a permanent state of anger at a being that I could do nothing to. What would have been the point to that.

Thus once I accepted the third choice, my anger went away.

For the people who are reading this who have religious faith, who are insulted by what I have said, don't be. I am not pushing my beliefs on you. I do not expect that my words will have swayed your beliefs. I do not look down on you for your faith. If your faith brings you comfort, then I am happy for you.

So please be happy for me that my lack of faith brings me comfort...

Hearing The News

It seemed to us anyway that Dylan was responding more to noises. He would respond to sounds in the room. Usually, but not every time. We simply could not tell what his real hearing abilities were.

Melissa was desperate to find out what Dylan's real hearing ability was. She took him for an additional hearing test with an audiologist. She brought him back to New York Eye and Ear Hospital for the test. The audiologist tried to run the test, but Dylan simply would not cooperate. He was unhappy and noisy. At times when he was quite his breathing prevented the audiologist from getting any results.

Perhaps I should explain about the breathing. For the first 2 years of Dylan's life, he would breath with a rasp. Anyone within a few feet of him would hear it. To someone who did not understand what Dylan had, it sounded like he was choking. We have been stopped on multiple occasions in public places by people telling us that our child was choking. We of course then have to explain to them that he was not choking, that he was born with a syndrome and that was his normal way to breath.

It used to get to me when people would stare at us when we were out in public with Dylan, because at first glance there doesn't appear to be anything wrong with him, but he sounds like hes choking and we are just ignoring it. In the eyes of a normal parent, we probably appeared to be negligent parents. What was I supposed to do? Wear a sign around my neck explaining Dylan? Never leave the house with him? Neither was an option, so I just got used to the stares. Eventually it stopped bothering me. As he got older, it also became more apparent that he was a disabled child and people would no longer give us the evil eye when they saw us. Now it was more stares of morbid curiosity.

His ENT (Ear Nose Throat) doctor said that the raspy breathing was due to a smaller than normal airway. She had no explanation for why it was that way and there was no reason or need to fix it at that time. It was just another symptom of the syndrome.

Thankfully, I have noticed in the last few months that the raspy breathing has somewhat decreased. He still has raspy breath when he gets very tired, but usually you cannot hear him breathing anymore. This is probably due to him getting older and his airway getting bigger with the rest of his body.

Let me get back to my original point. Due to the breathing noises the audiologist could not get any good results. The only way for us to find out what his hearing level was would be to have Dylan placed under anesthesia again.

Due to all of Dylan's other medical and mental issues, I did not think it was that important for us to find out what his hearing level was to justify another round of anesthesia. We were told that the most accurate results would not be available until he was older anyway. We decided to hold off on doing the test until later.

His ear tubes lasted nearly a year. Then like clockwork they both failed and he was back at New York Eye and Ear for another surgery to have new ear tubes implanted. We wanted to minimize his exposure to anaesthesia so we decided to kill 2 birds with one stone. We were hoping for 3 birds, but we were unable to schedule a hearing test at the same time as the ear tube surgery. We were however able to schedule another surgery at the same time. A surgery on his tear ducts.

Dylan would constantly have tears rolling down from eyes. We had taken him to an eye doctor who believed that his tear ducts might have been clogged or blocked. She would need to take a surgical look to find out what the issue was and to determine if he needed a tear tube. Fortunately, we were able to schedule both surgeries at the same time.

The result of the surgery was that Dylan had a new set of ear tubes and he also did not need tear tubes. His tear ducts had been sealed. The surgeon had opened them up and they appeared to be functioning normal. This was a minor relief for us. We would not need to replace tear tubes every year at least.

Finally when Dylan was around 18 months, we finally got the hearing test for him that would give us the results we needed. He was placed under anaesthesia and the test was run. The test showed that Dylan had pretty bad hearing loss. He had 50% hearing loss in his left ear and 80% hearing loss in his right ear. He was also unable to hear high pitch sounds.

We had hearing aids made for him so that he could hear better. He is currently on his second set of hearing aids as he had outgrown the first set.

The results from the hearing aids have been mixed. He doesn't hate wearing them, but due to the odd shape of his ears they tend to fall out easily. He doesn't seem to get much benefit from wearing them. We were hoping to see more responses to sound from his wearing the hearing aids. His responses to sound with and without the hearing aid do not really differ.

We were also hoping that as he wore them and heard more sounds, he would be more vocal as well. We were even a little bit blindly optimistic hoping that maybe he would be able to say a word like "mom". (This hope was probably just a fall back into the denial stage.) Sadly that has not come to pass. His vocalizations have barely changed since he was 1. He is now over 2 years, 8 months. Our hope is that as time goes on, he will pick up more sounds and try to mimic them. We can only wait and see...