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...
Tuesday, June 24, 2008
Tuesday, June 17, 2008
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...
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...
Saturday, June 14, 2008
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...
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...
Wednesday, June 4, 2008
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.
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.
Tuesday, June 3, 2008
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...
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...
Monday, June 2, 2008
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...
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...
Sunday, June 1, 2008
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...
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...
Subscribe to:
Posts (Atom)
Posts
