I just wanted to wish Dylan an awesome 3rd birthday. Though I am working all of today and will not be able to celebrate his birthday until this weekend, I am constantly thinking about him. He is my pride and joy. I love him with all of my heart.
I am so grateful that today he is more or less healthy; he is surrounded by people who care for him and love him; he loves going to school; that he continues to show physical and mental progress; and most of all that he is happy. He is constantly smiling. My wife likes to say that he is on "happy pills" and she wonders where she could get some.
For everyone out there who pities him and his life, I wish that you could be half as happy in your life as he is in his.
For all of those who said he wouldn't live to see his 1st birthday, you can suck it. To paraphrase the saying "living life is the best revenge".
I just want to congratulate Jessica Abo for completing the NYC Marathon this past Sunday, November 2, 2008. She was running in support of Team Dylan and Chromosome 22 Central. She is an amazing person and I and everyone else in the Emanuel Syndrome family are incredibly proud of her and very thankful to have her be a part of our community.
I know in an earlier post I said that I wanted to run a half marathon next year, but boy-o-boy does it look tough. Heck 2 people died running the race this year. I really need to start preparing soon (or I will wind up being one of the casualties).
Once again congratulations Jessica. We all love you and are incredibly proud of this huge accomplishment.
I have very sad news to report. Reese Kostjuk died yesterday on the day of her first birthday. Like Dylan, Reese was born with Emanuel Syndrome. Unlike Dylan, she had much more severe medical issues. Those medical issues have kept her in the hospital for most of her short life.
The world wide Emanuel Syndrome community is tiny. Those who talk about Emanuel Syndrome in a public way like a blog are few and far in between. The Kostjuk family was one of those who blogged about what it was like living with an Emanuel Syndrome child. I had been following their story on http://kostjuk5.blogspot.com/ for a few months now.
I had been hoping that Reese's medical issues might improve in the next year and we might possibly see Reese in Niagara Falls in 2009. Sadly, that will never happen now.
I have never spoken to them. The only communication I have had with them is an occasional comment I left on their blog. We have next to nothing in common. As you can see from our 2 blogs we have very different views on religion. Despite this fact, we had something in common that very few people on this planet have. Our children with Emanuel Syndrome.
This commonality in some way connected me to this distant family. I regularly followed their blog to see how Reese was doing. I was happy for them when she was able to leave the hospital for a while. I was worried for them when her condition worsened. It broke my heart to hear of her death. It brought tears to my eyes. I am truly sad for their loss. They are experiencing the worst thing that can happen to anyone in this life. The death of a child. A parent is never supposed to bury their child. It is our child's job to someday bury us, not vice versa.
An event like this of course makes me think about the possiblity of the death of my own child. The thought terrifies me. I am not sure that I could survive if something like that happened to me.
The one fact that does console me is the families faith. It does seem to provide them with comfort and will help them get through this horrendous event.
The Emanuel Syndrome family has lost another member. This sucks...
Once again just another thanks to everyone who attended, donated, and helped out. It is amazing that checks are still coming in. People have seen the stories on NY1 and the Today show and on all the various websites and they continue to respond.
If you read this blog and haven't yet given anything, I would kindly ask you to give what you can to this organization. It does not have to be a big donation. If $10 is all you can send that would be wonderful. Thanks in advance for your generosity...
Last night was absolutely amazing. I was so nervous about the event. Would it happen? Would be people show up? Would it be successful?
It blew all my expectations out of the water. It happened. Over 400 people showed up. It was an incredibly successful night.
I was incredibly emotional this weekend as I finally got a chance to meet Stephanie St. Pierre, the founder of c22c, who flew in from Canada for the fundraiser as well as Murney Rinholm and her 15 year old son Atle who flew in from North Carolina, the only other child besides Dylan I have met with Emanuel Syndrome. He was an amazing kid. He absolutely raised my expectations of what might be possible for Dylan in his lifetime. Adle walks. Watching him walk, nealy brought tears to my eyes. It was a truly beautiful sight for someone who had resigned himself to the expectation that his child would never walk. He may not walk like you or me, but he walks. Watching Adle and all he has accomplished inspired me to continue working my butt off with Dylan so that he too might someday also walk.
Meeting complete strangers who absolutely understood what you were going through was like meeting a long lost member of your family. There was just this instant connection . In a matter of a few hours, we became the best of friends.
None of them had ever been to New York before and it was my pleasure to act as their tourguide while they were in town. We took them to Rockefeller Center, Time Square, the World Trade Center, and Chelsea Market. Thanks to a wonderful friend , they got to be on the NBC Sunday Today Show.
After all the touring, Sunday evening was the big event. I have to continue to repeat what an amazing event it was. Thanks to all the wonderful people at NY1 who volunteered their time to make this thing happen. They went so far above and beyond the call of duty it is beyond belief.
I would name each of them, but I am so afraid that I will leave someone out, and I dare not do that, that I would like to just thank them all as a whole. You are an amazing wonderful group of people and I must say that I am quite jealosu that my wife gets to work with such amazing people. You all have a friend for life in Melissa and me. I would definitly have your backs in a bar fight. ;>
Though special thanks do have to go to Jessica Abo who ran the whole show (We will definitely be out there cheering for you when you run the marathon). My wife walked up to Jessica's parents at the beginning of the event and told them that they need to write a book on parenting if they could produce a child that was this good and generous to people that she had only recently met. I could not have said it better myself.
The party itself was amazing. The location of the Chelsea Art Museum was beautiful. The food was delicious. The drinks flowed freely. The band was amazing. People danced their butts off. We raised a bunch more money in the silent auction , thanks to the generosity of all the people who came.
The fact that 400 people would come for this event just boggles my mind. Most of them had never even heard of Emanuel Syndrome. Many of them were family, friends or co-workers of Melissa and I. Then there were the people who we had not spoken to in years who came. It was so wonderful to see them again at such an event. Then there were the complete strangers, who came because it was for a good cause.
In the future, whenever I have to deal with bad or uncaring people (and I am sure I will), I will not let it get me down, I will not become pessimistic from it. All I will have to do is think of all the people who worked on this event, came to the event, and gave for this event. It will let me know that there are some damn good people out there.
Unfortunately, there were a few people who we were hoping to see who did not come, but since it was such a wonderful evening, I can only look at it as being their loss.
I was incredibly emotional all weekend but I kept it together pretty well throughout the event. That is until I came up to speak and thank everyone who was there. As I started to thank everyone, my eyes just filled up with tears and my voice cracked. I barely got out the following sentence. "When you are told that you have a disabled child you feel so alone in this world. Watching everyone who came here tonight to support this event, I don't feel alone anymore."
To top of the evening, we met another family with a child with Emanuel Syndrome. We had no idea that they would come. They heard about the event and came and introduced themselves to us. They have a 12 year old boy with Emanuel Syndrome and they are from Long Island. I was stunned. After nearly 3 years of searching for another local family we had finally located them. Emanuel Syndrome might affect only 1 in 10 million kids, but there are 18 million people in the tri-state area. Based on the numbers, I knew they had to be out there somewhere. We will definitely be getting together with them in the near future.
To continue on how amazing and wonderful NY1 has been, they had a camera crew at the event and they have posted a story about it. You can see the video from the event at: http://www.ny1.com/Default.aspx?ArID=86766
Once again thank you to everyone who participated in this event. You have truly made a difference in the lives of people who are dealing with an incredibly difficult situation.
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).
"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.
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...
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...
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...
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...
I have never met Jessica or even spoken with her. Yet here I am listing her as one of the good people. Jessica works with my wife, Melissa, at NY1.
One day Jessica heard about Dylan and told Melissa that she wanted to help.
Jessica told Melissa that she was going to do a fundraiser for C22C to help support the 2009 Niagara Falls Meeting.
We have been hoping for a 2009 Niagara Falls C22C meeting but had no idea how we would plan for it or how we could help people get to it.
We had missed the 2006 meeting as Dylan was just born when that event happened and we were not in any shape mentally to attend at that time. Now we of course regret not having attended in 2006.
A 2009 meeting would allow us to meet with other families with Emanuel Syndrome children as well as other chromosome 22 syndromes. We would able to discuss the issues that we deal with on a daily basis with other people who understand what we are going through.
We know that it can be financially difficult for many of these families to make it to the event and we wanted as many people as possible to come to the next one.
Melissa tells me that one of her co-workers was going to do a fundraiser for Emanuel Syndrome and my first reaction was a cynical one. What is she getting out of it? Does she have a family member with it? Do we have to pay her for it?
The answer to those questions was Nothing, No and No. Jessica created, planned, and coordinated the fundraiser completely on her own.
Why would she do such an amazing thing for people who she barely knew for a syndrome she had never even heard of before. She did it because it was the right thing to do.
My next reaction was thanks for the kind thoughts, but what are you really going to do?
Boy were we about to be surprised.
She decided that she was going to create a fundraiser for c22c. She found a location for the event. She got other people to volunteer for the event. She joined the c22c board of directors. She got people to donate items for silent auctions and goodie bags. She got people to attend the event. She took the ball and ran with it. She has coordinated information with Dr. Emanuel and talked to Stephanie St. Pierre on how the funds should be spent.
She has inspired me to want to help out as well. Melissa and I are doing everything possible to support the fundraiser. I have gotten most of my family and friends involved in one way or another.
Thanks to Jessica's efforts with the fundraiser, we will be able to help a lot of people attend the 2009 C22C conference event next year. We are currently expecting 200- 300 people to attend the event. I am hopeful that we can even get more that that.
Anyone who is reading this, I would kindly ask you for your help with the event. The fundraiser will be on October 5, 2008.
Below I have listed the press release for it. Anything you can do to support it would be incredibly appreciated. We would love to see as many people as possible there. If you can make it, that would be wonderful. If you can't attend, any other kind of support that you can provide would be amazing.
Thank you to everyone in advance for their support and especially thank you to Jessica for making all of this possible...
The “Don’t Stop Believin’ Benefit”
About
About Emanuel Syndrome and Dylan
On December 9, 2005, Melissa and Oleg Rabinovich went to the hospital ready to welcome their second child into the world. But as soon as Dylan was born, they knew something was wrong. Dylan had very large extra pieces of skin around his ears and suffered from something doctors called “failure to thrive.” It was not long before Melissa and Oleg learned their son had a very rare and severe genetic disorder called Emanuel Syndrome. Instead of having the 46 normal chromosomes most of us are born with, Dylan was born with 47. The extra chromosome, comprised of small parts of Chromosomes 11 and 22, prevents Dylan from walking or talking. Children with Emanuel Syndrome often endure hours and hours of therapy a day including: physical, occupational, speech, feeding and special instruction.
Emanuel Syndrome is a rare disorder. It is unknown how many children have it, but since the establishment of the support group Chromosome 22 Central, Inc., at least 200 families worldwide have identified themselves as having children with the disorder. Children living Emanuel Syndrome have severe developmental delays and countless medical issues. Many who are born with the disorder die within the first few months. Those who don’t are expected to have shortened life-spans.
But 2-year-old Dylan is defying all odds.
NY1 News Anchor Jessica Abo first learned about Dylan after she started working with his mom Melissa, an executive producer at the station. Jessica had been planning on running the 2008 ING New York City Marathon for several months; and after learning about Dylan, she decided to run the race in his honor, and to organize a benefit to help families around the world living with the devastating diagnosis.
The “Don’t Stop Believin’ Benefit”
Ben
Benefit Details
The benefit will take place on Sunday, October 5th at the Chelsea Art Museum in New York City. NY1 News will be covering the event. The evening will include a V.I.P. reception featuring TV personalities from NY1 News and “America’s Most Wanted” correspondent Jon Lieberman. Tickets for the event will start at $125 for general admission and $175 for V.I.P. Guests will have an opportunity to enjoy an open bar, fabulous food and desserts, live music and a silent auction.
Who We’re Helping
Stephanie St-Pierre created C22C 12 years ago, when her daughter was born with Emanuel Syndrome. Living in Canada, she was told that there was no other child in the country like her daughter Maia. Refusing to believe that, she set out to find other families and as much research as possible. Over the years, Stephanie has gathered family surveys and countless journal articles. Today, Stephanie’s charity is the primary source for parents trying to understand their child’s diagnosis. To help Stephanie with her efforts, Murney Rinholm started Chromosome 22 Central, Inc., a 501(c)(3), which is based in North Carolina. Currently, Stephanie, Murney and Melissa are working on C22C’s 7th annual conference, which will take place in the summer of 2009. The retreat will be the first and only opportunity some families will have to come face-to-face with people living with Emanuel Syndrome and other chromosome disorders. We hope the money we raise will defray the costs of the conference so that more families from around the world can come together to share their resources, knowledge and support.
Get
Get Involved
Our list of sponsors/partners currently includes:
· Arthur Ashe Youth Tennis and Education
· Chelsea Art Museum
· Crayola
· Estee Lauder
· Marc Dorfman Photography
· Poof-Slinky
· Warren Levi Karate
· NY1 News
- Running Center
We are very fortunate to have generous organizations on board that are providing a space, gifts for a silent auction, food and monetary contributions, so we may give all of our proceeds to C22C, Inc.
The “Don’t Stop Believin’ Benefit”
Sponsorship
$100
- Business Card included in event journal, which will be distributed to 500 guests
$500
- Corporate logo included on invitation
- 1/4 page ad in event journal
$1,000
- Corporate logo included on invitation
- Two tickets to V.I.P. reception
- 1/2 page ad in event journal
$2,500
- Corporate logo included on web invitation and souvenir T-shirt
- Four tickets to V.I.P reception
- Full page ad in event journal
$5,000 or more
- Corporate logo and link included on web invitation
- Corporate logo included on souvenir T-shirt
- Eight tickets to the V.I.P reception
- Full Page ad in the event journal
- Logo printed on “Step and Repeat” banner
(This banner will serve as the backdrop for formal photographs when people arrive at the event)
Donations to Chromosome 22 Central Inc., are tax deductible.
The “Don’t Stop Believin’ Benefit”
If you would like to help please contact us teamdylannyc@yahoo.com. Thank you for your consideration and for believing that we can help children like Dylan live to see a better tomorrow.
Sincerely,
Team Dylan
Alyssa Abo, MD
Jessica Abo
Justin Baer
Shira Blumenthal
Lauren Gelman
Tara Gordon
Rachel Hayon
Jason Hill
Sari Lisch
Jonathan Levy
Eli Lunzer
Amy Metzger
Jeffrey Milhalakis
Jill Scott
Heather Shaw
Alana Shultz
Joshua Sigmon
Adam Spoont
Kirk Wagenbach
Josh Zeichner, MD
What do you say about the woman who brought you out of the abyss of abject ignorance and provided you with the shining light of knowledge and information. That is what Stephanie did for Melissa and I.
When we learned that Dylan had Emanuel Syndrome, we had no knowledge to go on other than a copy of a page from a genetics guide that Dylan's geneticist gave us. It did not have much information at all. We had no idea where to turn to. Nobody we spoke with had heard of Emanuel Syndrome let alone give us any advice on what we needed to do.
Then we found http://www.c22c.org. We could not believe that we were finally getting some accurate information on what Dylan had. We were finally able to talk to people who knew what we were going through. We were finally able to provide information to doctors and caregivers. Melissa was able to provide a packet of information to every doctor that we bring Dylan to thanks to the info on C22C. We could not believe how lucky we were to get this information.
My wife emailed the creator of the website, who turned out to be Stephanie St-Pierre. She was this amazingly informed person who would try her best to explain everything she could to us. She would answer all of our questions, no matter how many times she must have answered those same questions from dozens of people before. It wasn't just short yes or no answers to our questions. She would give us these great in depth answers that really helped us at a time when we had no clue what to expect. She was incredibly patient. She never seemed angry or bitter (which was amazing to me as I was very angry and bitter at the time we met her).
It wasn't just us that she helped. We quickly joined the Yahoo Groups dedicated to Emanuel Syndrome and C22C syndromes and we saw that she was constantly on there. She was answering questions from people, congratulating others on their accomplishments, consoling others on their losses. It seemed to us that she never took a break.
While running the C22C website and running the Yahoo Groups, she was also posting to 2 blogs, running a Facebook page for C22C, and running conferences and gatherings for families dealing with C22C issues.
She managed to do all of this unbelievable work while at the same being the parent of Maia, her daughter with Emanuel Syndrome. She also managed to adopt 2 children from China, Jaida and Jaxon. She also works and goes to school.
When the hell does this woman sleep?
She told us how when she had Maia, there was nothing out there. There was no information or groups to help her deal with raising an Emanuel Syndrome child. Most of us having to deal with such a situation would fall into a permanent state of depression or denial. Not Stephanie. She found all the information. She gathered it all together. She used her situation to help others like us.
Stephanie St-Pierre is the heart and soul of the Emanuel Syndrome and C22C community.
Everything she has done for the Emanuel Syndrome and C22C community has made me want to get involved and to help other families dealing with similar situations.
The only bad thing I can say about her is that I couldn't possibly keep up with all of the wonderful things that she does. I just don't think I am capable of doing as much good as her, so she does kind of make me look bad compared to her. ;)
The funny thing is that I am writing so effusively about a person who I have never met in real life. I have only emailed or talked on the phone with her. I am very eager to actually finally meet with Stephanie in real life in a few months.
She is a truly amazing and remarkable woman who I am incredibly grateful for having in our lives. As hard as it may be to raise a child with Emanuel Syndrome, Stephanie and everything that she does has made it a little bit easier...
Where do I begin to discuss what a wonderful woman my wife is. She is quite simply an awe inspiring mother. She has done an amazing job raising our three children.
From the moment we learned that Dylan would have issues, she has taken the lead in caring for him and arranging for all of his needs. She has dealt with the dozens of doctors that Dylan has required. She has navigated the maze of bureaucracy to get Dylan the services that he needs whether from Early Intervention, CPSE, or Medicaid. She has fought to get Dylan the equipment he will require to better service his needs.
She has dealt with all the therapists that Dylan sees on a daily basis, keeping up on what they are all doing with him. She has lavished praise on the therapists who do wonders with Dylan and gotten rid of the ones who did not know what they were doing.
She has spent countless hours working with Dylan to improve his physical and mental potential. She has insisted along with me that Dylan will not be shunned or hidden from sight. She has agreed with me that if people want to accept us, they have to accept our son.
Despite the intense time drain that having a child like Dylan entails, she has still managed to be a wonderful parent to Ethan and Ava. She tries to spend as much time as possible with all of our children. She tries her best to share her time equally among all of them so that none of them ever feel like they are ever being neglected.
She also somehow manages to fit in a full time job where she has an incredible amount of responsibility. Fortunately for her, she truly loves her job, otherwise I cannot imagine how she could maintain such a schedule.
With all this on her plate, she still manages to be a phenomenal wife as well. She is the love of my life. She still manages to devote time to our marriage. Compared to most other people, I truly feel we have a strong excellent marriage. We don't have to "work" at our marriage. It just comes to us. Much of the credit for that belongs to Melissa. Though I think I deserve a little bit of the credit as well for our great marriage (Pat myself on the back).
You hear so many stories about women who throw themselves into their disabled children and ignore the rest of the world. Melissa is not one of those women. She has somehow managed to maintain her all her responsibilities as a mother to a disabled child, a mother to 2 healthy children, a wife, and as a television news producer.
Despite everything she has done, she still feels that she does not devote enough attention to each part of her life. That is of course absolutely ridiculous. I guess this guilt she feels keeps her on her toes maintaining this balance.
Melissa is like the worlds best juggler. What she does is incredibly challenging and yet to the rest of the world she makes it look like a walk in the park.
If I did not have someone like Melissa to share the burden of raising a child like Dylan, I do not know what I would have done. Everything she does as a mother makes me want to be a better father and husband.
For all of the above reasons and for many many more, Melissa is the most important "good person" in my life...
I have been writing this blog now for a while and upon reviewing it, I have realized that the tone of it can be pretty dark to an outside reader.
My writing makes it look like I am a bitter angry person who has an axe to grind with everyone. It appears that I hate everyone and everything. It looks like I am a total pessimist, who only expects the worst.
Nothing could be further from the truth.
What I have been writing about the negative attitudes in my head account for probably 5-10% of my thoughts. If you met me in real life, you would see that I have a pretty happy go lucky type of personality. I like to think of myself as a fairly optimistic person. I have great difficulties in holding a grudge against anyone. It doesn't take much to get me to laugh and I quite often have a smile on my face.
I have been using this blog to exercise those 5-10% demons out of my head, so they don't drive me nuts. Thus the blog has taken on a very dark tone. I would like to lighten up that tone now.
One of the reasons that I have been able to maintain my happy go lucky nature since the birth of Dylan is that I have received the support and help from some truly great people.
Some of these people have given me direct help, some have helped indirectly, and some have inspired me by the way they have lived their lives.
Over the next few postings, I want to talk about some of those people. This will not be an all encompassing list covering all of the good people in my life. It will be a list of some people that I just felt I needed to talk about.
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...
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 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.
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...
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...
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