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...

Why I Do This?

Why would I put myself out there like this and talk about my thoughts and feelings?

I'm a guy. Guys are supposed to be stoic and strong and not need to talk about this stuff. I guess that old definition of being a man has gone out the window. I still like to think of myself as a guys guy, but I fee like I needed an outlet to let out some of what is going on inside my head.

The most common route is going to see a shrink. Millions of people go see a person and tell them all their deepest darkest thoughts and desires. They have a regularly scheduled time each and every week (sometimes multiple times a week) where they take time out of their day for this.

My wife thought that maybe I could get some benefit from talking to a professional.

Maybe I'm crazy, but why the hell would I pay a total stranger thousands of dollars a year to hear me whine and complain. What good would that do me? When was the last time you heard of a person who benefited from seeing a shrink so that they no longer needed to see them.

Its a business. The psychologist, psychiatrist, social worker, therapist, bartender, etc. makes money from hearing us whine to them. If they truly fixed us and made us better, they make no more money. The goal of this profession is to get us addicted to the service. Everyone I know who is in therapy, has been in it for many years and they have no plans to stop anytime soon.

Does therapy help some people? Of course, those with very serious mental conditions can benefit greatly. For the vast majority of people, it is simply a huge waste of time. The only true benefit for some people that I can tell is the narcissistic benefits of having a person give you their undivided attention for 50 minutes.

The other option was to just stay quiet and keep it all bottled up deep inside me. I couldn't do that either. It would feel like I was a teapot on the stove and I was coming to a boil. This is why people go postal. The pressure just build up in them to such a point that they just snap and do crazy things (Maybe I did snap and this blog is how I went crazy).

I could have also just put everything on my wife. I could just let loose on her with everything I am thinking and feeling, but that would simply not be fair. No matter how bad things might seem for me. I know they are a thousand times worse for her. She is the mother. She is the one burdened by the pointless guilt. She needs someone to talk to let out all her thoughts and feelings. I am that person for her. Of course I tell my wife many things, but I couldn't just constantly push all my anger and sadness onto her. I still have to be the guy. I have to be her rock. I can show occasional emotion to her, but to be a blubbering idiot to her on a regular basis just seems wrong and greedy to me.

The dumbest option and the one too many other men resort to is to simply run away. Too many men out there just run away when confronted with a situation like mine. They leave their families and the situation, because they simply can't handle it. This is the cowards way out. This was never ever going to be an option for me. I love my wife and kids too much to ever do something that selfish and stupid.

Then it hit me. Why keep it bottled up? why just talk to one person? The perfect solution. I could talk to the entire planet. I could do it at my convenience, not at some shrinks time. I could do it when I felt like I had something to say, not just because I had a regularly scheduled appointment.

Writing this blog has been a cathartic experience for me. It has enabled me to get out my frustrations and feelings and I haven't had to pay anyone for this.

Blogging is the new therapy...

The First Surgery

Once Dylan was home, we began taking him on a whole series of doctors follow up visits.

Among many of the unknowns that we had with Dylan's medical condition was his hearing. We did not know if he could hear and if he could, we did not know how much he could hear. Dylan's pediatrician recommended that we see a Pediatric Otolaryngologist (otherwise known as an Ear Nose Throat Doctor or an ENT). He thought that there might be water behind the ear.

We looked for an ENT and Staten Island University Hospital recommended Dr. Robin Dyleski , who worked at New York Eye and Ear Hospital. I was shocked to discover that there were only a few Pediatric ENT's in the entire city of New York.

For a normal person fluid behind the ear drum drains into your sinuses. When the doctor examined Dylan she found that the fluid was not draining. She recommended some drops and a return visit in a few weeks to see if it would get better.

Upon our follow up visit, she determined that the fluid was stuck there and it was putting pressure on his eardrums and affecting his hearing. There was no other option but to operate on him and insert an ear tube in each ear. Ear tubes are tiny steel tubes that puncture the ear drum and allow the fluid behind them to drain. The hope was that his hearing might be normal after the ear tubes would be implanted. The only negative to the ear tubes is that they usually only last about a year and they need to be replaced over and over again.

I was made aware that this was a very minor surgery and that we should have no real concerns, but the father in me was in full panic mode. He was so medically fragile. What if something went wrong? What if he had a bad reaction to the anesthesia? The one good thing that was going to come of it was that Dr. Dyleski would also remove some of the ear tags that were so visible.

I was a nervous ball during the day of the surgery. Thankfully, it went very quickly. Dylan was great. He woke up so nicely from the anesthesia. His outer ears looked so much better. Unless you looked carefully, they looked nearly normal. Before there was no question that his ears were deformed.

Dylan had to stay in the hospital overnight for observation to make sure there were no negative side effects from the surgery or anesthesia.

The one thing you learn is that it is both a blessing and a curse to be unique at a hospital. It is a blessing because many more doctors are interested in your case and will pay attention to you and look in on you. When you have a common disease or affliction, the doctors barely notice you. They have a been there, done that attitude for the common stuff.

The curse comes from the fact that every nitwit intern and resident wants to come by and look at the "medical freak". They are not there to help you or assist you. They are simply there out of morbid curiosity. In the one day we were in the hospital at least a dozen different interns and residents came by to look at Dylan. The worst are the know it all interns and residents. They act like they are so superior and smart where in most cases they don't know anything at all.

One resident came to take a look at Dylan and asked what he had. We told him that Dylan had Emmanuel Syndrome. He tells us right away that he knows what it is and he has treated other Emanuel Syndrome patients. Right away we start quizzing him all about this. He starts hemming and hawing and is unable to answer any of our questions about this alleged past patients or even about his knowledge of Emanuel Syndrome. We had caught him in his lie. He had no idea what Emanuel Syndrome is. We knew for a fact that Dylan was the only Emanuel Syndrome child in the tri-state area.

A good experienced doctor will simply admit his ignorance and study up on the issue. We have run into several great doctors who have become semi-experts in Emanuel Syndrome after seeing Dylan. None of them lied and pretended they had all the answers upon meeting us.

Of course this particular resident couldn't simply do the right thing and admit he lied to us earlier. Instead he actually pretended that his pager went off and ran out of the room. My wife and I were incensed by this. We demanded to speak to the attending physician. We told the attending how unprofessional and dishonest that resident had been and we told him we did not want any other interns or residents coming within 50 feet of us.

The following morning Dr. Dyleski came by to take a look at Dylan. The tubes had done their job and drained his ears. Now it was only a matter of finding out if his hearing worked...

Pediatric War(d) is Hell

For the first 2-3 weeks that Dylan came home with us, he seemed to be doing okay. He was eating an appropriate amount. He was sleeping well. He was very lethargic, but that was due to his hypotonia (loose floppy muscles).

Then he suddenly stopped eating. Melissa was struggling to feed him even an ounce of formula. Then one day while I was at work, Melissa called me to tell me that Dylan wasn't eating at all, he was incredibly weak and she was really worried and wanted to take him to the hospital. I told her to go ahead and that I would meet her there.

I remember how wonderful the staff and doctors were in the NICU (Neo-Natal Intensive Care Unit). They stayed with Dylan round the clock. The were incredibly patient with us and did everything they could to make the experience as easy as possible on us. I was slightly comforted by the fact that our son would be seen by the same people who had already dealt with him.

What a shock I was in for.

The hospitals policy was that once your child left the hospital, they could not be readmitted into the NICU. Only newborns were allowed in the NICU. They told us that Dylan had to be brought to the PICU (Pediatric Intensive Care Unit). What a difference between the two wards.

The PICU was a large open room with beds lining the walls. There were only 2 patients in there when we came in. Dylan and a 15 year old boy who was expected to die within a day. Imagine the shock we experienced as we sat there worried about Dylan watching this other boy dying.

This was the first time I imagined what it would be like watching my son die, having to plan his funeral, burying him. It was a terrifying moment. That horrible thought of watching my son die and imagining what his funeral would be like resurfaces whenever we find out about a new medical problem.

We could go home at night from the NICU, leaving Dylan alone for even a minute was not an option in the PICU. The staff there simply did not give a damn. They were too busy gossiping amongst each other to bother looking after our son. That situation is another reason that I am grateful to be a man and not a woman. I hate hospitals. The idea of having to spend a night in one skeeved me out to no end. My wife though immediately stated that she would be spending the nights with him while he was in the hospital. Though I did not tell her, I was incredibly relieved. I would be with them as much as possible, but I desperately did not want to sleep in the hospital on the disgusting things they call parent beds (Chairs that fold flat).

Dylan was getting intravenous fluids and his condition was not worsening so the next day we were transferred to the Pediatric ward. Though I was incredibly happy to see Dylan leave the PICU as the doctors did not think his condition was life threatening, the pediatric ward made the PICU look like heaven. The rooms were dank and dirty. The paint was peeling. The bathrooms smelled horribly. The staff was downright rude to us. The doctors were nice people, but we rarely saw them. The nurses and other staff made it a horrible experience.

I am grateful that Dylan was incapable of realizing what was happening to him there. I cannot imagine what it must be like for a child who is aware of his/her surroundings to have to stay in such a horrible pediatric ward. My wife and I have since then tried to help the Joseph Maffeo Foundation with their fundraising efforts as one of their goals is the physical rehabilitation of the pediatric ward. A sick child should not have to be in that type of environment.

After 5 days of IV fluid, Dylan had regained enough strength to be able to feed himself. We were able to take him home again. I have never been so ecstatic to leave a place.

Unfortunately, it would not be the last time Dylan went to a hospital...

Acceptance

This is the stage that allows you to keep on going every day. This is what keeps you functioning as a human. Acceptance is what allows me to once again enjoy life. It allows me to plan for the future.

No human being could survive if they did not eventually reach acceptance. On the TV show "Monk", the character of Adrienne Monk is portrayed as a man who could never truly accept the death of his wife and it has turned him into a shell of a human being. Though the show is a comedy, I definitely can relate to some of the more poignant moments when we see how Adrienne simply cannot come to terms with the loss. He can never move on or continue to develop as a human being because he is never able to achieve acceptance.

Acceptance has allowed me to come to terms with what happened. Acceptance has allowed me to follow the Forest Gump school of thought; shit happens.

There is no point to denying the truth, no one to blame, no one to bargain with, no point to being depressed. There is just the truth and the facts as they exist.

Acceptance allows me to think of my sons long term needs. He has a very good chance now at a long life span. I will need to plan to be there for him for as long as possible. My wife and I need to watch out for our own health. I cant afford to drop dead at fifty. I have to live a long and healthy life so that I can take care of him. I also have to plan for his care after I am long dead and gone. I hope that Dylan's siblings, Ethan and Ava and maybe more in the future will be up to the job after we are no longer here.

Accepting of what has happened has made me a less judgemental person and a more patient person. It has also made me a little less understanding of other problems. No matter whether they are financial or personal, they can be overcome, and I should not allow them to get to me.

I have possibly lost some empathy for others when I hear them complain about nonsensical daily problems like missing the bus or having too wait too long for something. The way I look at things now that in the grand scheme of things those are just not problems that one should worry about or complain about anymore.

The only problem with acceptance is that it is not a permanent state. When I least expect it, denial, bargaining, anger, and sadness will rudely interrupt my state of acceptance. Fortunately, their stays are usually brief ones. I am happy to see them go when they leave me.

My son is my son. I love him with all of my heart. I will be there to care for him and will do all I can to protect him from any and all harm. I will do my utter best to keep him happy and content. I am his father. That is my job.

Sadness

This stage of grief is the hardest one to deal with.

The depression and self pity can overtake you. The feelings of "woe is me"

Why me? What did I do to deserve this? Didn't I live a good life? Didn't I do good things?

When Dylan was born, and I first entered the cycle of grief, this one lasted far longer than the rest. This stage probably lasted for months if not more than a year.

This stage puts some terrible thoughts in your mind. Horrible thoughts of suicide cross your mind. "My life is now so horrible, why should I continue?" Thankfully, these thoughts are dismissed within seconds. Still, the fact that thinking about suicide even for a second shocks me as a person who never even offhandedly considered it.

The sadness reveals itself in feelings of numbness, almost like you are in shock. I felt like I was just going through the motions of life and not actually living it. I didn't want to do anything or talk to anyone. I just wanted to be left alone. I would sit in front of the TV without actually paying attention to what was on it. They were just meaningless flickering images in front of me. I stopped making any plans for the future. I just lived day to day with barely a thought as to what would be coming the next day let alone the next weeek, month, or year.

This is also the stage that repeats most often. Sometimes it goes away for weeks at a time, but then suddenly it comes back to you. The good thing for my sanity is that the sadness now only lasts for a few minutes to at most a few hours. However, anything can set it off, and you never expect it.

We have friends who have a wonderful beautiful daughter who is just a few weeks older than Dylan. I hadn't seen their daughter in a while and then saw her again when Dylan was about 18 months old. She was running around and laughing and feeding herself and hugging her mom and dad. It did not hit me until I remembered that she was nearly the same age as Dylan. When I came home from their house I cried and and was in depressive funk for nearly a day.

After a while you tend to forget what you don't have with a disabled child. Seeing a child Dylan's age just being normal, brought back all that loss and grief. I was mourning for that child that I imagined having. I was mourning for the child that I did not have. I was mourning the child that Dylan could have been. The child who would run to me and give me a big hug. The child who would give me a goodnight kiss. The child who would say "I love you".

Since that incident, I have thankfully seen my friends daughter on plenty of occasions without the same spiral into depression.

Other events have thrown me into depressions though.

The day that I realized Ava, my youngest daughter, had surpassed Dylan in every physical, emotional, and cognitive facet made me incredibly sad. My daughter was now walking, talking, hugging, and feeding herself. I was so proud of Ava for her accomplishments and I love her so much, but I was at the same time so sad that Dylan could not do any of this. The thought that a person over a year younger was now more advanced than him reminded me how far Dylan was from normal.

The day my wife and I visited the first school that Dylan would be possibly attending brought me incredible sadness as well. We visited the United Cerebral Palsy (UCP) school near us. Seeing all these severely disabled kids a few years older than my son, depressed the hell out of me. One particular child we saw who was about 4 or 5 years old was suffering from CP, he was sitting in a chair motionless being fed. He looked at us when we walked into the room and smiled at us. The smile was so much like Dylan's. It broke my heart. I pictured Dylan sitting there in 2 or 3 years. My wife and I were both in tears during the tour, despite our best efforts to keep calm and collected.

Every few years there is a get together for Emanuel Syndrome families. We have never attended one as Dylan was born too recently. Melissa insists that we should attend the next one. I honestly dread going there. I am afraid that seeing all these children and adults afflicted with Emmanuel Syndrome will throw me into a deep depression. Just like the UCP visit, it will show me what I have to look forward to, but now on a much more long term basis. I don't think I will handle it very well. I am sure I will get over it, but it will be incredibly difficult to be there.

The one good thing about this stage is that it does not last as long as the previous time it occurred. The things that brought it on before do not continually bring it on again. I have seen many kids Dylan's age now and it no longer gets to me. I have seen plenty of disabled children on additional school visits and it no longer gets to me as badly.

There is always the dread in the back of my mind that something else will happen. Some other shoe will drop, that will bring me right back into this sadness stage.

After having gone through this maelstrom of denial, bargaining, anger, depression, the final and healthiest stage is...

Bargaining

This is a tricky one. Who do you bargain with when you have a disabled child?

It's not like I can go to the doctors and offer them something to make my son better. Though of course I looked into that possibility.

I looked into any potential studies and experimental treatments. I was going to use all of our resources into getting Dylan help that the general public was not aware of or that they did not have access too. If I had to fly him to Switzerland or South Korea, I did not care. I was going to find the miracle cure for him out there somewhere.

That lasted for about a week.

I soon realized that no matter what contacts I had, no matter my ability to negotiate something for my son, no matter what bargains I could make, it would not make a difference. This was not a disease that could be cured. Every single cell in Dylan's body was damaged. There was no pill or shot or elixir or surgery that could fix him.

Modern science could do nothing for Dylan. He would need a miracle.

Like many other people, I turned to prayer.

I have never been a very religious person. Though my great-grandfather was an orthodox cantor in a shul in Odessa, Ukraine, 60 years of communism had eliminated most aspects of religion from my family. When we immigrated to the United States my family became a little more religious. We weren't exactly orthodox Jews, but I did go to a yeshiva for a year, I had a barmitzvah and went to Temple on the high holy days.

As I got older, I grew more distant from religion, but I had not yet abandoned it. I had not prayed in quite a few years, but at some point after Dylan's birth I said a prayer to god that if he could fix my child, I would become the most devout man on Earth. I would pray everyday, I would keep a kosher home and live an ultra-orthodox lifestyle. I would become a hasidic Jew if only god helped Dylan.

A few days of this obviously led nowhere. I gave up hope that this would help. I began to have private conversations with whatever higher deity or prophet would help him. I spoke to Jesus, Mohamed, John Smith, Buddha, L. Ron Hubbard, Zeus, Vishnu, Odin, Ra and any others I could think of.

I thought that whichever of them could help Dylan, I would become their most devout follower. I would renounce all other faiths, I would renounce all worldly possessions, I would make the rest of my life based around the worship of them. This once again was a pointless exercise in bargaining.

I was so desperate at that point to find something to help Dylan that I stated out loud that if Satan himself came before me and asked me to sign over my soul to him for all eternity in exchange for making my son normal, I would do it in a heartbeat.

After a few seconds of nothing happening, I came to the realization of how ridiculous all this bargaining was. There was no one man, god, or devil that could make Dylan normal. All my bargaining attempts just seemed incredibly silly and foolish to me in hindsight.

The bargaining stage is the only one of the 5 that has not recurred on a regular basis.

Of course, after bargaining, comes the hardest stage of all...

Anger

In many ways this one hits me the most.

Whenever I watch the news and hear a story about how some parent abused or killed their child, I get so angry. How could they. Don't they realize how lucky they are. They have healthy children who could walk, talk, have bright and promising futures. Instead of doing everything possible they could to insure a bright future for their children, they did unspeakable horrible things to them.

I feel such rage at these people. They took the most wonderful cherished thing in their life and they destroyed it. They did the worst thing that a human being can possibly do. We are genetically programmed to love and protect our children. The things that these people have done are monstrous.

People like Joel Steinberg, Susan Smith, Andrea Yates, Cesar Rodriguez , Josef Fritzl, and many others can only be looked at as monsters. The recent case of Josef Fritzl enraged the entire world. In my mind I would have loved to be in a room with this man and slowly break every bone in his body, let him heal and then rebreak him all over again for the next 24 years along with other horrible unspeakable acts of violence. Still, it wouldn't be enough. The evil that he and the others listed above had done has no possible level of pain or punishment that could compare.

What shocks me is how often I hear these stories. It seems that not a week goes by that I don't hear a story on the news about another child that has been beaten to death or sexually abused. What the hell is wrong with these people?

I get angry every time. Fortunately, now the anger only lasts for a few minutes. Afterwards, all I want to do is give my children a hug and a kiss. In a crazy way these stories make me so grateful to have my children and make me want to be a better parent. Never in my most psychotic fantasies could I even imagine doing what those people did.

But what about the anger that I felt at having a child like Dylan. Of the 5 emotions, this one lasted the least. My anger at my wife lasted less than a second. My anger at the world and the unfairness of the entire situation probably lasted for a few days. I have felt anger at some people in my life (who shall remain nameless) for making comments that they thought were appropriate but were absolutely stupid and insensitive comments to make. I did not angerly respond to those people as I did not see the point. I just ignored their comments and I have since mentally forgiven them for what they said.

There is one anger that has lasted much longer. I will discuss that particular anger in a future posting, as this particular anger occurred after what I experienced in the next stage.

The next stage is...

Lorenzo's Oil

I was going to write about this later, but after hearing the news today about the death of Lorenzo Odone, I felt I needed to write this now. Below is the story from today's news.

WASHINGTON (AP) -- The man whose parents' battle to save him from a nerve disease was told in the movie "Lorenzo's Oil" died Friday at his home in Virginia, having lived more than 20 years longer than doctors predicted.
Lorenzo Odone, who doctors said would die in childhood, died one day after his 30th birthday, said his father, Augusto Odone.
Lorenzo Odone had come down with aspiration pneumonia recently after getting food stuck in his lungs, his father said. He began bleeding heavily, and before an ambulance reached their home, his son was dead, Odone said.
"He could not see or communicate, but he was still with us," Odone said Friday. "He did not suffer. ... That's the important thing."
Odone was found at age 6 to have adrenoleukodystrophy, or ALD. His doctors told his parents that the disease, brought about by a genetic mutation that causes the neurological system to break down, would lead to death in two years.
The disease leads to the accumulation of substances called very long chain fatty acids in cells, damaging the material that coats nerve fibers in the brain.
Susan Sarandon and Nick Nolte starred as Michaela and Augusto Odone in 1992's "Lorenzo's Oil," which recounted their efforts to formulate the oil they said helped their son fight the neurological disease, despite lacking scientific backgrounds.
Sarandon earned an Academy Award nomination for her performance.
A study published in 2005, based on research with 84 boys, showed that a treatment made from olive and rapeseed oils -- patented by Augusto Odone -- can prevent onset of the disease's symptoms for most boys who receive an ALD diagnosis.
Odone plans to take his son's ashes to New York to mix them with those of his wife, who died in 2000. Then, Odone said, he will sell his home in Fairfax, Virginia, and move back to his native Italy.
Odone also plans to write a book memorializing his son, "to tell the story of Lorenzo as a way to make him live on."

A few months after Dylan was born, I rented the movie "Lorenzo's Oil" on DVD. I felt like I needed to see what Melissa and I were going through. The movie was excellent and had me in tears throughout most of it. For those of you who have never seen it and are living with a disabled child, this movie is a must see.

One of the things the movie pushed me to do was to seek out other families who are dealing with a similar situation to ours, just as the Adone's did. Melissa and I became active in the Emanuel Syndrome Yahoo Forum Group. Melissa got involved with many different organizations dealing with children's issues and I joined a local fathers support group.

As horrifying as what happened to Lorenzo was, I was somewhat comforted that the family had managed to survive it and they never gave up on their child and did everything possible to save his life. The ending where they showed how many children's lives had been saved by this family and how they would continue to look for a cure for their sons condition inspired and uplifted me.

Despite the overwhelming odds against them, I believed that this family could perform a miracle and bring their son back to what he used to be.

When I read that he had died today and that he had not been cured, it nearly brought me to tears. As part of that never ending cycle of grief, this news put me into a joint denial and depression stage for a few hours. If this amazing family couldn't save their son, how could we?

The depression and denial goes away with the realization that I was not going to "save" my son. I was going to raise him. There was no cure. There was just the reality, and we would have to face the reality to the best of our abilities.

For more information on what Lorenzo Odone was facing please see: http://www.myelin.org/

R.I.P. Lorenzo Odone. You were an inspiration to millions of people.

Denial

Before I had any children, I used to think that the worst possible thing that could ever happen to me was to have a disabled child. I could simply not imagine what it was like to have to care for a child that could never grow up to be an independent adult. The thought that I would have to change my adult child's diaper and feed my adult child terrified me.

That is one of the reasons that Melissa and I were so careful during her pregnancies. We both wanted to be sure that we had healthy children.

When Dylan was born I was clearly in denial. I refused to accept the diagnosis. I looked into every possibility. I found everything I could on possible cures. I believed that the diagnosis was wrong. There must have been an error in the testing. The lab screwed it up. The geneticist was wrong. The doctors were wrong. Everyone was wrong. This couldn't be happening.

Accepting the truth simply terrified me and I was simply unprepared to face the reality of the future that my family would face. It took me some time at the beginning but with the truth in your face constantly the denial eventually goes away.

But the denial doesn't disappear for good. Every once in a blue moon when he shows a little bit of progress, the denial will hit me again.

Dylan will take a few steps in his walker. "Maybe he will walk."

Dylan babbles a a syllable. "Maybe he will talk."

You hear about how much worse off another child with Emanuel Syndrome is. "Maybe he will be different than all of the other Emanuel Syndrome children."

Then you get those unrelated to anything moments of denial. "Melissa and I have high IQ's. That has got to make a difference right?"

Fortunately for my mental health, these moments of denial usually are momentary ones.

Once denial goes away, it is often followed by...

The Never Ending Cycle of Grief

In my psych 101 class back in college I learned about the 5 stages of grieving.


1. Denial "It can't be happening."

2. Anger "Why me? It's not fair."

3. Bargaining "I'll do anything to make this better."

4. Sadness "I'm so sad, why bother with anything?"

5. Acceptance "It's going to be OK."


You learn that people don't go through all of them when they experience a tragedy but they do go through some of them with the eventual hopeful goal to be able to achieve acceptance.

With the death of a loved one it may take time but most people do eventually achieve acceptance.

With the birth of a disabled child, you do achieve acceptance as well, but the difference is that it doesn't end there. The loss confronts you on a daily basis. So just when you think you have finally accepted the situation, something happens that gets the whole mourning cycle going again.

The cycle began with...

Guilt

It was Melissa's DNA. Not mine.

The Geneticist told us that Melissa had a balanced translocation. Her DNA was out of order but all the pieces were still there. It has not and would not affect her life. It's only effect was to make her much more likely to have a child with an unbalanced translocation. That is exactly what happened to Dylan.

"Thank god its not me". That was the the first thought that ran through my mind. I had been worried that somehow my DNA had done this to Dylan. I had been having speculative feelings of guilt on the off chance that it was from me.

Immediately following this relief were feelings of guilt, for being grateful not to have caused this.
I could only imagine how Melissa must be feeling having heard Dylan's diagnosis and the news that it was her DNA. She later told me about the intense feelings of guilt that she felt.

My mind began to race as to what I should be thinking and feeling. Should I blame her, yell at her, lash out at her? It took me less than a second to banish those thoughts from my mind. Those thoughts were idiotic and pointless. What happened to Dylan was not her fault. She should not feel guilt over this. It was just a random occurrence that just happened to us. No different than if we had won the lottery. The fact that us having a child like Dylan was a 1 in 15 million chance made me compare it to winning the reverse lottery.

I can only imagine how many marriages have fallen apart when a couple faces this situation. You hear the stories about the mother who completely obsesses about the disabled child and ignores the rest of the world, including her husband. You hear the stories about the fathers who cannot deal with the situation at home and therefore throw themselves into their jobs and spend less and less time at home eventually getting to the point where they become very distant from their family. In both cases, the stories usually end in divorce.

I was determined that would never happen to us. I would not abandon my family. Melissa would not turn into an obsessed parent who ignored everything else in life. We were great together. We could survive this. We would survive this. We have survived this...

The Answer

A few weeks after Dylan came home we visited the Institute of Basic Research (IBR) and met with a very nice Geneticist and Genetics Counselor. They were incredibly professional and compassionate and listened to all of our concerns and tried to answer our many questions as best as they could. They asked for an entire biological family history from my wife and I. They asked for any history of genetic disability in our families. I had a distant cousin with Aspergers' Syndrome and Melissa had an aunt who had mysteriously died at 3 years of age in the late 1940's (more on this relative in a future post).

They took Dylan's blood as well as our own. They were going to perform a Fluorescence In Situ Hybridization exam (abbreviated as FISH test). They were going to examine his chromosomal structure to see if there were any possible defects.

It would take quite few days before we got an answer as to what could be wrong with Dylan. In the meanwhile, my entire family was busy looking online for a possible answer. Nothing that we found really matched what Dylan had.

There were some close ones like DiGeorge Syndrome which held out a possibility of a semi-normal life and then there were others like Spinal Muscular Atrophy (SMA) which would have led to a horrible death within a few years. When I read up on SMA, there were some similarities to what Dylan had and the thought of that happening to him terrified me. I broke down and cried for a few minutes after I finished reading about SMA. Thankfully I was alone when that happened.

About ten days after they took our blood IBR called us to come back in. I remember sitting there happy to know that we were finally going to get an answer to this mystery. Then the Genetics Counselor and Geneticist walked in and right away I knew it was not going to be good news.

They were trying to be stoic and professional, but they were human beings and they couldn't keep from having such looks of pity for us on their faces.

They told us he had Emanuel Syndrome. Obviously neither Melissa nor I had ever heard of it. In all the dozens of hours of online research, I had never come across any mention of Emanuel Syndrome (otherwise known as a 22q11 partial translocation). They told us that genetically his 11th strand of his 22nd chromosome had been damaged and parts of it had broken off to form a 47th chromosome.

They told us his outlook was bleak, he would in all likely hood never walk or talk. He would be classified as either severely or profoundly mentally retarded. I found out later that this would put his possible maximum IQ at 34. He showed us a rare syndromes textbook that had some information on Emanuel Syndrome including photographs. Unfortunately, the description of the syndrome mirrored much of what Dylan had. This fit what he had much more than anything else that I had found online.

The child pictured had some definite facial similarities to Dylan. The adult pictured there looked horrible. Was the geneticist telling me that my son would look like that when her grew up?

I was sitting there with a blank look on my face. My wife had tears in her eyes. What they were telling us was simply not sinking in for me. This couldn't possibly be happening to me, to us, to my family.

I asked them if there were any other Emanuel Syndrome kids who had surpassed the diagnosis, who could walk and talk?

The Geneticist told us no, from all of his research all of them were severely or profoundly disabled. I then sat there in stunned silence.

He then told us that Emanuel Syndrome was inherited from a parent.

Either mine or Melissa's DNA had done this to Dylan. Which of us was it....

The Good and the Bad

The doctors continued to run tests on Dylan. The more they looked at him, the more they found.

He had an atrial septal defect in his heart. This is also referred to as a hole in his heart. They told us that it was a small hole and they would not recommend surgery as it might close up on its own later in life (it didn't).

After they gave him an MRI they told us that he had hydrocephalus. This is also referred to as water on the brain. They told us that it could be nothing, but he would need follow up tests to make sure that the level of hydrocephalus did not increase. For now there was nothing that should be done for it.

The prognosis for his future was just getting worse and worse.

We really needed to get some good news.

We finally started to get some of it.

Dylan's jaundice was going away after a few days under the Bili lights.

Though his kidneys were definitely going to be of great concern to us down the road, at this moment they had enough functionality at about 30-50% of normal that dialysis or a transplant were not immediately necessary.

Dylan was taking in formula well through the feeding tube in his nose and had regained some strength so the doctor's decided to take out the feeding tube and try to bottle feed him to see if he could take to it. It was very slow going for him, but he managed to take in a few ounces at a time.

Based upon his successful eating, the doctors told us that if he could continue to successfully bottle feed we could take him home in a few days.

With this mix of good news and bad news, Melissa and I wanted to know what exactly was wrong with Dylan. What was his diagnosis?

Dr. Roth, the head of pediatrics began researching it, while Melissa and I put on our junior medical investigator hats and went to work on the Internet to find a disease or syndrome that fit in with Dylan's symptoms.

Neither Dr. Roth nor we were able to find something that matched Dylan's issues. Dr. Roth asked for a genetics test of Dylan. Unfortunately, there were no geneticists on staff at the hospital, so we made an appointment to visit the Institute of Basic Research (IBR) with Dylan when he would be discharged for a genetics test.

Finally after nearly a week in the hospital, the doctors told us that despite Dylan's many issues, he was healthy enough to go home. I was ecstatic.

I was finally taking my son home...

It Finally Hits Me

I like to think of myself as a guy's guy. I was always raised with the belief that men don't cry, women cry. Men have to be stoic and in control of their feelings.

Up until this point, I had only cried once in front of my wife. That occurred right after my mother called to tell me that my grandfather, Ilya (a man who had been like a surrogate father to me), had just died. He had been sick for a long time and we all expected it to happen, but it still hit me like a ton of bricks. This happened a year before Dylan's birth. As per Jewish tradition, Dylan was named for Ilya.

Dylan had been in the NICU for a few days. I was sitting in the hospital cafeteria with my wife, taking a break from being in the NICU with Dylan. We were talking about everything the doctors were telling us and what Dylan's latest prognosis was.

That was when it finally hit me.

Until this point I had believed that in the end everything would be all right. I truly thought that that doctors would fix any issues that Dylan had and we could take him home and he would grow up to be a happy healthy normal child.

I just started telling my wife that we needed to face reality. We could no longer live in this fantasy world that everything was going to be eventually okay. We needed to be prepared for a reality that our son could very well die, he may require a kidney transplant to survive, and that I was going to give him my kidney if that is what it took. We also needed to be prepared for the very real possibility that if Dylan survived all that, he was very likely to be deaf.

As I finished telling her this, I just started uncontrollably sobbing. It embarrassed me. I covered my face with my hands as I didn't want anyone to see me like this. I tried to stop, but I couldn't. All the bad news of the last few days, all the tension, all the anguish and worry, I just couldn't keep it bottled up any longer. I just let it out in this sobbing cry that lasted for what felt like an eternity but in reality was probably more like a minute.

After it was over, I have to admit I felt better letting it out. My wife was amazing. She sat there and cried with me. She understood how difficult it must have been for me to have to let out my emotions like that in front of her.

We held hands silently for a few minutes and then we went back upstairs to the NICU to be with Dylan.

We really needed to hear some positive news because up until this point all we had heard was bad.

What came next was a mix of both...

NICU & More Bad News

We were a few hours away from going home. Melissa believed that Dylan was not thriving as he should be. I was still in complete denial and tried to convince her that he was fine and we should take him home as soon as possible. Thank God Melissa did not listen to me then. She asked one of the attending pediatricians to take a look at him.

The attending doctor took a look at Dylan and did not like what she saw. She saw that he was too floppy for a newborn. She also noticed that he was starting to get jaundiced. She told us that she wanted to take Dylan to the NICU (Neo-Natal Intensive Care Unit). We followed them to the NICU and watched as Dylan was placed in an incubator. They right away began testing him and the bad news started coming at us.

He was jaundiced so they placed him under the blue lights to improve that.

He was hypotonic, which means that his muscles were too loose and weak. They tested him for this by placing him on his stomach. A normal healthy newborn will turn their head left or right so they can breath. Dylan just lay there even though he couldn't breath that way.

Over the next few days, the news kept coming at us.

He was not breast feeding, so we tried bottle feeding. We were ecstatic if he could manage an ounce of formula at a time. A normal healthy baby would be drinking at least 4 ounces. It got to the point that the doctors were so concerned over his inability to eat that they inserted a feeding tube through his nose into his stomach that they could insert formula through.

If the attending doctor had not taken Dylan to the NICU and instead we had taken him home, we very well could have starved him to death as we tried to continue to fruitlessly breastfeed him.

They pointed out to us that he didn't just have tags on his ears, he also had tags in his ear canal as well as pits on his ears.

Finally, the worst news so far hit us. He had extremely small kidneys. They were not capable of working at the level that his body required. They figured this out by doing a test of his creatanine level. If your numbers are too high, it means that your kidneys are not properly filtering out the impurities in your blood stream.

We were looking at the distinct possibility that my son who was not even a week old could be in kidney failure and he may require a kidney transplant or he could die....

Failing His First Test and Breastfeeding

Dylan was taken to the maternity floor and placed in the general ward, since Prince Charming MD had declared that he was fine.

Melissa soon joined him there. We had previously gone through the procedure of birth and the hospital stay with our first son, Ethan, so everything seemed normal. It made me feel better to see Dylan in the maternity ward with all those other newborn kids. After all they would only place him there if he was fine.

The following morning the next shock hit. As is standard, all newborn babies get a hearing test. Dylan had failed his hearing test in one ear. The audio technician told us that it could be nothing, plenty of kids fail the test on their first try and then pass when they get retested. It could be fluid buildup, a false negative, or any number of reasons to not pass the test. She told us that he would be retested the next day.

In my mind, a small little panicky voice started to say that this could be more than just a false negative. Combine the ear tags and the failure of the hearing test and there could be something seriously wrong here. I just had no idea how seriously wrong it was going to be.

Melissa then tried to breastfeed Dylan. Our older son, Ethan had been very successfully breastfed until he was 6 months old and we both hoped that Melissa could do the same for Ethan. (You save a ton of money on formula). For those of you who don't know, there really is no way to tell if breastfeeding is successful other than weighing the baby after each feeding. Dylan had some difficulties latching onto the nipple but he could occasionally manage it. We knew that babies can take few days to successfully latch onto a nipple, so his first 2 days of difficulty didn't worry us too much at that point. Melissa would continue to try for him to latch on for the next few days with very little success. She was beginning to get a little frustrated.

Dylan once again had his hearing tested and once again he failed the test. The tech once again told us that it didn't mean anything and that we should have him retested in a few weeks to get a definitive answer. That panicky little voice inside me got a little more panicky.

As is standard now for a natural birth, 48 hours later, Melissa and Dylan were going to be released and sent home. I hate hospitals, so this was an incredible relief for me to be able to take them home.

Little did I realize that this could have led to my sons death....

Dylan's Birth

When Dylan emerged, he had these very large tags on his ears. I had never before seen that on a child.


He was crying, which was a good sign. After all a healthy baby should cry right?


The pediatric nurse took Dylan and started working on him. I asked her what the ear tags were, and she did not know. She asked me if I wanted a doctor to come down to take a look at him.


Of course I do, I responded. She called someone and five minutes later staggered in some 1st or 2nd year resident looking like he just woke up. He took one look at Dylan and yelled at the nurse, "This is what you called me in here for?".


It seems Prince Charming MD hadn't yet gotten his beauty rest. I wanted to punch him in the face right then and there. This was my son he was talking about. Something wasn't right, so damn right we were going to wake your ass up and make you do your job.


He did a perfunctory exam and pronounced that nothing was wrong with him and the resident shuffled off to go back to sleep.


This was my first lesson in the fact that medical residents know absolutely nothing and you should never listen to them. This is when I finally began to learn something, residents are not real doctors, they are still students in the apprenticeship phase of their education. Relying on a resident is like hiring a law student to defend you on a murder conviction. You have to be nuts to do that.


The thoughts running through my mind at this point were that, OK, Dylan had a weird ear thing but that's all it was. He was perfectly normal otherwise. Just like you hear about kids born with tails or sixth fingers. It was just one of those weird things that would never really affect his life. Some plastic surgery when he got older and he would be fine just like any other kid.


I had no idea what was coming.....

Introduction

My name is Oleg Rabinovich. I'm a 32 year old lawyer. I'm very happily married to Melissa, a television news executive producer. We have been together for over 10 years. We have 3 kids:


Ethan: 5 years old

Dylan: 2 years old

Ava: 1 years old


Ethan and Ava are happy smart kids who I have very high hopes for and they are my pride and joy.

The above photo was taken during Ava's first birthday.

This blog will not really be focusing on Melissa, Ethan, or Ava though I will occasionally talk about them.


The purpose of this blog is for me to discuss what it is like being the father of a severely disabled child.


Dylan was born December 9, 2005. He has been diagnosed with Emanuel Syndrome, otherwise known as an 11/22 Unbalanced Translocation. That second one is a mouthful so I will stick to using Emanuel Syndrome.


When Melissa got pregnant for the second time, we were both so excited. She wanted a girl, I wanted a second boy. She did everything that a pregnant woman is supposed to do. She took her prenatal vitamins, she didn't eat sushi, or drink caffeine or alcohol. All the medical checkups went great. It was a great pregnancy.


Then on December 9, she went into labor and had a very good natural birth. Dylan came out and right away we knew something was very wrong.......