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.
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...
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...
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5 comments:
Oleg - I have been/still get ugly too. Good topic.
I was at a family wedding this weekend. Friend sof some of my relatives who hadn't seen me in years, came up to me and said, "Hey, you are the one with the two great kids!" (Meaning my healthy adopted ones) - I gulped. Of course, it's hard to talk about the one who is sick...all my family is terrific, but it is still hard I know for a few members.
I have learned that you will lose friends, findout who your true ones are, and I have to say, since I had Maia, my circle of friends has significantly improved - present blogger included :)
Yep, I have also been the ugly have experienced the ven UGLIER.
I was ashamed at first. I was embarrased. I was afraid and I too tried desparately to hide the skin tags on Makily's little face/ears. She had one on her right cheek and I almost always held her where that cheek was facing me so no one would see it.
Thankfully we have not really lost any friends. Some relationships are not what they were but for the most part I am closer to my family AND friends than I EVER have been.
You DO really learn who your true friends are when you have a sick child.
Wow, You are such a powerful writer. I find that I am constantly telling everyone my Daughter has ES because I feel they are thinking "why isnt she walking" or why does she look abit different. I find that if Im open and tell people right up front they are very empathetic with the situation, however, there is one friend who doesnt even call anymore or visit its so weird, I never did anything, I just think its harder for some people to know how to deal with a special needs situation, ticks me right off, but I dont need her anyway....there are 100 supportive people to the 1 person who isnt. My daughter always used to shake her head and it would embarrass me as she was the only baby doing the bee bop everywhere we went...I would laugh though at the situation. It was better when music was playing because people just thought she was dancing when in reality she had a self stim behavior which she has mostly out grown. Thankfully. I was afraid she would get woop lash...probably didnt spell that right...anyway, good for you and all of us for finally figuring stuff out and loving our children they way we do.
Thank you so much for this topic.
I have tears in my eyes because most people don't talk about the "ugliness." I still get angry sometimes because instead of "just playing," I feel I always have progression in gross motor skills as my main goal. My child has to work so hard to do basic skills. Our family, too, has lost friends, but we have met so many amazing people in the last 18 months because of Adlai's 22q11 deletion. Thank you for your blog!!
Thank you for sharing this. I have tried to be understanding when people are being "ugly". I can sometimes let things pass if someone is simply ignorant but I don't have tolerance for people that are just too busy to get involved with a family who might be complicated.
People who talk about their children's birthday party (that we were not invited to) right in front of us. How the girls loved the twinkle lights on the special tent or the costumes they wore. Allison has been invited to ONE birthday party EVER. I almost cried with tears of joy. We haven't had a group party since she turned five because very few people bothered to show. We only have the four of us now.
She is in 3rd grade this year. She loved reading class in Kindergarten. In 1st grade the new teacher was "getting to know the routine" so Allison went to ZERO reading classed. When I asked about it in 2nd I was told "She missed all of 1st grade reading so she is too far behind."
I have two brothers who do not give Allison birthday gifts. All of my other nieces, daughter and nephew get gifts for their birthdays from them but not Allison.
The good side is, I know who my real friends are. The family who invites us to Christmas Eve every year and made sure that Allison had a knitted hat and scarf like the rest of the girls.
Oops, didn't mean to use this as a vent. I just wanted to share that I understand and I appreciate your insight.
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