New York 1 Story

New York 1 is a 24 hour news channel in New York City. It covers local news for the New York City area. For those of you who have never heard of it, it is very similar in nature to CNN Headline News but only covering New York stories. NY1 is part of Time Warner. If you are a fan of the show "How I Met Your Mother" the character of Robin works at a NY1 like station that the show loves to make fun of.

My wife works there as an Executive Producer and has been there for over 10 years. The people who work there have been amazing. They have been so incredibly supportive of my wife. I have stopped by her office enough times to say that it is a wonderful place to work and Melissa loves working there. I have to admit that I am a little jealous that she has such a wonderful work environment. These are the same people who are now running the fundraiser this Sunday (DON'T FORGET TO SUPPORT IT).

They decided that they would do a story on Dylan and his unique issues. Below I have copied the text of the story. I highly recommend that you go to their website to see the video of the story at: http://www.ny1.com/content/ny1_living/health/86511/parents-of-child-with-rare-genetic-disease-find-comfort-in-support-group/Default.aspx

"What would you do if someone in your family was faced with a medical condition that doctors had never seen before? For a member of the NY1 family, this was more than a hypothetical. NY1's Kafi Drexel filed the following report on the discovery by a NY1 employee that her son had a rare genetic disorder.

Usually by the age of three, most kids are walking, talking, and feeding themselves. Dylan Rabinovich cannot do any of those things.

Six weeks after he was born, his parents were told he has a medical condition, the likes that most people on this planet have never seen before.

"We first noticed different physical characteristics on him," said Dylan's mother, Melissa Rabinovich, an executive producer at NY1. "He has a depressed nasal bridge, a small chin, huge balls of extra skin on his ears and ear tags. He was also failure to thrive. He couldn't eat, so the Neonatal Intensive Care Unit team sent us to a geneticist right away."

The geneticist discovered that Dylan has a rare chromosome disorder called Emanuel Syndrome. In addition to not being able to walk or talk on his own, Emanuel Syndrome causes mental retardation, along with a myriad of unique medical challenges. So far, there are only about 200 cases documented worldwide.

"As a geneticist I am used to seeing rare conditions, but this is one of the exceedingly rare conditions," said Dr. Milen Velinov, a geneticist at the Institute for Basic Research in Developmental Disabilities. "And I can tell you, I haven't seen other case with this syndrome."
Because Dylan's condition is so rare, it makes getting the best care a challenge.

"Different health issues come up with Dylan everyday. He has water on the brain, a hole in his heart, hearing problems, vision problems, small kidneys and other gastrointestinal problems," said Rabinovich. "On top of that, we've had to navigate the system with this really disabled child that no one has ever heard of his condition."

The Rabinovichs were told Dylan would never live to see his first birthday, which they refused to accept. That led them to seek solace from the handful of other affected families they met on the internet.

"We found a mother from Canada online who was told more than a decade ago that her child was the only one living with this syndrome," Rabinovich said. "Refusing to believe that, she started an internet group to help support families. Thanks to her, we've survived the last almost three years."

"You have to have a team mentality in terms of supporting a kid who is very chronically ill with a lot of issues," explained pediatrician Dr. Janet Shen. "And, as a parent, I think having a parent support group can help alleviate a lot of stress from a lot of the unknown that might face you."One of the next goals for these families is to try to meet face-to-face, bringing together children and parents who share the common bond of raising children with virtually unknown diseases.

For more information on Emanuel Syndrome, go to http://www.c22c.org. "

The Ugly People

I've discussed the good and the bad, so I thought it was only appropriate to discuss the ugly. When I say ugly, it has nothing to do with appearance, it has to do with behavior. Behavior that I today find to have been quite ugly. Behavior that was wrong and inappropriate. I am basically going to talk about good people who did ugly things.

The first people I will talk about is my family, Melissa and I. When Dylan was born, we acted ugly. Maybe we were still in shock, maybe we were simply in denial, but when Dylan was born we tried to hide his issues from everyone we knew. No one outside of our immediate family knew what had happened. When people called us to congratulate us on the new baby, we acted as if everything was fine, as if there were no issues. People would call us and ask us how the baby was and we would say that everything was fine. This was usually followed up by a comment from them that so long as the baby was healthy everything else was good. I would usually respond with a thank you and change the topic of conversation.

This behavior continued though Dylan was sent to the NICU. We simply told people who asked that he was jaundiced and needed some time under the lights and then he could go home (a half truth since he really was jaundiced).

Once Dylan was allowed to go home we arranged to have a bris for him. A bris, for those of you who don't know, is a Jewish ritual circumcision usually performed on the 8th day of life. This is of course a major occasion for a Jewish family involving many members of our extended family and friends. We made the decision to keep Dylan out of sight as much as possible and to put a hat on him that went over his ears so that his ear tags would not be seen. We even tried to hide it from the mohel. He of course saw them and asked us about it and we told him that it was simply excess skin that would be removed as he got older.

When I went back to work, people congratulated me on the birth of my son and asked for pictures and asked if everything was well. I of course responded that everything was fine. I kept up the illusion that my son was normal.

Even when we finally got the diagnosis of Emanuel Syndrome, we did not tell most people. In fact for the first year of his life, only one person at my office ever knew that I had a sick child. I just never brought up the subject.

My wife was much better than me at this. She started people much sooner than I could but yet in the beginning she too tried to keep it as quiet as possible.

Our parents had a much more difficult time acknowledging it than we did. They did not tell many of their friends or distant relatives. Part of this is due to the fact that they are just from a different generation. A generation where a child like Dylan would be hidden away from the public and probably institutionalized. Today they clearly love and adore Dylan but I feel that it took them longer to accept Dylan than it did our other kids.

In fact, at my sister in laws recent wedding we had distant relatives come up to us to tell us how sorry they were to hear about Dylan, and they were surprised that no one had ever told them. Mind you this was more than 2 and a half years after Dylan was born.

I like to think to this was mainly due to their still being in a state of denial but some of that ugly behavior that Melissa and I were exhibiting, they were showing just as well.

Today almost everyone in the circle that we interact with whether friends, family, acquaintances, or co-workers knows that we have a son with Emanuel Syndrome. I no longer try to hide that fact. I let the word get out there as much as possible. I want to people to be aware. I am not ashamed of my son. I love my son.

I am ashamed of my earlier behavior however. Though most of that behavior was probably denial, not all of it was. Part of it was shame. Shame that I could have anything other than a normal healthy child. Damn that was a stupid way to think.

If anyone is reading this who has just been told that you have a disabled child, do not try to hide that fact. Don't be ashamed. There is no reason for you to feel that way. There are so many other people in the same situation as you. Its amazing how many people once they found out about Dylan told me about their own families with disabled kids. The longer you try to keep it quiet and hide the fact the longer it will take you to get help. Some of the best help that you can get is the emotional support from your friends and family. Let them in and tell them what you are going through and you will be surprised at how good most of them can be.

I said "most" in the previous sentence, because we did have some friends who we are no longer friends with whose behavior epitomized ugly.

Nearly all all of our friends upon finding out about Dylan were incredibly supportive, but we had one set of friends who upon learning of Dylan, shunned us. They simply disappeared from our lives. They never called us, they never returned our calls or emails, they used whatever excuse they could come up with to not see us. We found out from another friend that they did not know how to respond to Dylan, so therefore they just wanted nothing to do with us. 2 years later one of them emailed my wife, upset at my wife's behavior towards her. She claimed that it was my wife's fault that they stopped being friends and she had always been a good friend to us. My wife and I could not believe the nerve of some people. I saw no point in responding to her beyond ridiculous points.

My response to these "friends"? To hell with them. If this is how they would behave, what kind of friends were they ever in the first place. I wont name them, but I assume that if for some reason they ever do read this, they will know who they are.

Unfortunately, as Dylan gets older, I am sure that I will have to deal with ugly people again. I'll be able to handle it. I just need to make sure that I never act ugly again...

The Bad People

I have spoken about the good people that have made a difference. So I thought it only fair that I also talk about some of the bad people in my life. I am not going to use a blog entry per person like I did before, I will simply mention them here.

I am not going to embarrass anyone so no names will be used, but I will give general descriptions so if they do happen to read this blog, they will know who they are.

One of our first lessons when we started finding out what assistance was available for us after having Dylan was learning how to deal with the bureaucracy. There are plenty of services out there for people who need them, but it can be very difficult finding out what is available to you especially when the people who are supposed to give you this information intentionally don't do so.

Now most of the people we dealt with were incredibly informative and were absolute lifesavers for us, but some of the key people we dealt with intentionally tried to sabotage our efforts with Dylan.

We got help for Dylan as early as possible and began receiving therapy from 6 weeks on through the New York State Early Intervention program with a local provider. As far as we knew Dylan was receiving all the services that he was entitled to. Unbeknown to us, there was one key service that Dylan did not receive until 2 years later that would have been vital to him. Feeding Therapy.

Today, Dylan can only eat pureed foods. He has not moved beyond baby food and the occasional cheerio or fruit loop. The reason is that he never learned how to chew properly. He basically allows food to sit in his mouth and then swallows it. Dylan should have been receiving feeding therapy since he was 1 year old.

Unfortunately, he did not receive it until after he was 2 years old. It was only when a doctor asked us about feeding therapy did we realize that such a therapy was possible for Dylan. When we discussed this with Dylan's social worker, she stated that she did not think he needed it and thus she never mentioned it to us. We right away demanded that Dylan be provided with the feeding therapy that he was legally entitled to. After much arguing, she finally relented and agreed to provide it. We had already lost over a year of therapy time with him due to this persons callousness. Dylan wound up only receiving a few months of feeding therapy before he aged out of early intervention. I still think about where Dylan's ability to eat would be today but for their negligence in providing this vitally needed therapy to him.

A few months later as Dylan was getting close to aging out of the Early Intervention program, we requested that Dylan be provided with 3 things that he was entitled to under the program. A special needs chair, a special needs high chair, and a special needs stroller. This same person along with a few other bureaucrats decided that we did not need these items. We could make due with just one. What was their reasoning for this? They gave none.

What was the real reason for their attempt to keep Dylan from receiving items that he was legally entitled to? They wanted to save money and they had the attitude that we should buy it on our own even though they are legally required to provide it to him. They saw that we had a house and a car. It seems that many of the people they work with are poor uneducated families. They acted as if they resented providing us the services because we were educated and employed.

It required my wife going over their heads and going to the top personnel and embarrassing them for their behavior for them to finally relent and give Dylan those 3 things.

The great majority of therapists who came to my house to work with Dylan did wonderful work with him. We are eternally grateful for their efforts. Dylan would not have achieved many of the things he can do today without their tireless work with him.

There were some who clearly did not give a damn about our child. They would come late. They would leave early. They would spend their entire time with him doing their paperwork. They would regularly cancel appointments and never make them up even though by regulation they were supposed to.

We have heard horror stories about therapists showing up at the beginning of the month for 15 minutes getting the parents to sign off on the paper work for the whole month and not coming back until the next month. I would like to think that they could get away with this with less educated parents. Melissa and I would not allow such a thing to happen to us. We tried our best to monitor the therapists work with Dylan, despite the fact that both Melissa and I work.

We entered the Early Intervention program on Staten Island with incredible thanks and gratitude and we left it in disgust. Though most of the people we worked with were wonderful individuals who truly cared about Dylan, the rotten people there completely ruined our early enthusiasm. The rotten people in this particular program truly epitomized the concept of an uncaring bureaucrat.

I wont name the program that Dylan received early intervention from here, but for any parent of a disabled child on Staten Island who is about to begin Early Intervention, please contact me and I will be more than happy to advise you on which program to avoid and which one to give a try.

I also need to discuss those uncaring bad people in the medical profession. Today Dylan has a great team of doctors taking care of him. But boy oh boy did we have to go through some horrible people before we got his team.

There were the doctors who did not want to deal with a baby with a rare chromosomal disorder.

There were the doctors who callously told us he would be dead before he would turn one and that we should simply forget about him and move on (Damn did I want to hit those people).

There were the doctors who lied about what they really knew.

There was the nurse who nearly killed Dylan when she was about to inject him with 10 times the medication that the doctor had prescribed on one of the occasions when we had to bring him to the hospital. (I am glad that Melissa was keeping an eye on her that day).

There were the doctor with the bedside manor of an idiot who couldn't be bothered to give us test results.

The doctor who placed my 3 week old son in the same room as a 15 year old dying boy. My wife who was already in shock with everything else had to sit there and watch this poor boy dying before her eyes.

The list goes on and on.

It sometimes gets to you. It can get you down. Its easy to get very jaded by people like this.

Thankfully, there are those good people who I have written about earlier who help me return to my cheery optimistic self.

I have discussed the good people and the bad people. There is one final group of people left for me to discuss...

C22C Benefit Video

Please watch this amazing video that comes to us courtesy of the amazing never sleeping Stephanie St. Pierre.

You can also see a bigger version of this video at:

http://video.google.com/videoplay?docid=-1580048634747523326

Other Good People

There are plenty of other good people that deserve mention, but I decided that writing a blog entry about each of them individually would be a little silly and look like one giant shout out (besides I want to get back to the complaining, all this being nice is getting to me ;>).

I want to talk about Dylan's therapists. Not all of them, but most of them were truly amazing remarkable people who worked their butts of to get him to where he is today. They were in constant communication with us and let us know what we needed to do with him to help him progress. Thanks to their efforts, today Dylan is beginning to feed himself with a spoon, he is walking with a walker, he is butt crawling, and doing many other things that we were not sure we would see from him. Thanks to all of their efforts we continue to hope that someday in the future he will be able to fully feed himself and maybe even walk on his own. The few other therapists who were not so helpful I will talk about in a future post.

I want to talk about the family members who have helped us out by watching and playing with and spending time with Dylan. Melissa and I occasionally need a mental health break and to get away from our kids and just be together. That would not be possible without our families assistance and for that we are incredibly grateful.

I want to thank all of our friends who have helped us out by providing us with their support. Whether it was something as simple as calling me after Dylan was born and letting me know that they were there for me and that I all I needed to do was ask whenever I needed help; or just understanding that early on Melissa and I were not very good to our friends as we were lost in our own world; or simply not acting differently with us though our situation had changed. That normalcy that our friends provide us can be a wonderful thing.

Finally, I want to thank all the people who have read this blog and who have left comments on here and who have talked about it with me in person. When I started writing this, I did not tell anyone. Not even my wife. I wasn't sure if anyone would ever see it. It was just a way for me to be able to get my thoughts out. I was shocked when someone actually left a comment on here. Wow, someone did read this. Then the comments kept coming. Then people I knew started talking to me about it. Wow. It was amazing that people were interested in what I was writing. The best part was when a fellow Emanuel Syndrome father commented on here. I actually felt like I might be of some help. For that, I am incredibly grateful to everyone who reads this blog. It gets me incredibly energized and keeps me writing here.

Ill keep on writing it, you just keep on reading it...

Randy Pausch

I have never met this man. Unfortunately, I will never get to meet this man. He died on July 25, 2008. Despite this fact, this complete stranger had a positive impact on my life.

He showed me that no matter how hard life can be, no matter what is thrown at you, you still need to have fun. You still need to smile. You still need to work to achieve your dreams.

He did this for me through the magic of Youtube. Randy had learned that he was dying of pancreatic cancer. He was given the honor of performing "The Last Lecture" at Carnegie-Mellon University where he was a professor. This is an annual tradition where a retiring professor gives his final lecture as if he was going to die. For Randy Pausch this was the real thing.

The lecture was put on Youtube and as of this writing has probably been viewed between 10-20 million times. The lecture is quite long at an hour and a half, but it is well worth watching.

If you have watched the lecture, you probably know what I mean by finding it inspiring. If you haven't watched the lecture, stop reading this right now and go to http://www.youtube.com/watch?v=ji5_MqicxSo

After you watch the lecture I strongly recommend that you also watch the ABC News piece on him at http://abcnews.go.com/gma/lastlecture

If you don't have tears in your eyes after watching the ABC News piece, there has to be something wrong with you.

What Randy showed me is that if he can smile though he knows he is dying, I can still smile though I have to deal with the difficult issues of raising a disabled child.

For a very long time after having Dylan, I was just living on a day to day basis. I was incapable of making any real concrete long term plans. After watching the Last Lecture, I realized that I have to keep on living, I have to continue trying to achieve my life's dreams. I have to plan ahead.

Here's just a few of the items I want to do:

-When I moved into my current house, it had a nice sized empty basement. The perfect space for me to build a home theater, something that I have dreamed about for a very long time. A few weeks after we moved Dylan was born, and that dream just stopped. I am now in the process of building that home theater and hope to have it finished in a few months. I am going to throw one heck of a Superbowl party this year.

-I am going to snowboard this winter. Ive never tried it, but have always wanted to. I'm going to fall on my butt quite a few times and I am sure that I will love every minute of it.

-I am going to run a half marathon in 2009. I know this sounds funny from a man who is way over weight, but the funny thing is that despite my obesity, I love to run. I used to run quite a lot when I was in law school. I just allow to many other things to keep me from doing it. I have always dreamed of running a marathon. I don't think I will be ready to run a marathon next year, but if I put my mind to it, I could run a half marathon in 2009 and maybe a full marathon in 2010. I am simply not going to let this dream stall anymore like it has for the last few years.

These are just a few of the dreams that I want to accomplish in the next year thanks in part to Randy Pausch and his unwavering spirit. From watching the Youtube video and the ABC News special, I get the feeling that Randy would have been a heck of a fun guy to hang out with.

Having a disabled child is not the end. Death is the end. Randy Pausch showed me that even when the end is coming, you still need to have a smile on your face and you still need to live your dreams...