In need of a Cyber-Hug!

December 10, 2004

Hi all,

I know you will understand this post and the feelings I am having.

Since Halle's diagnosis last month (at 7mos), yesterday was the

first day that I felt - well just so sad.

It was my daughter's Grade 1 Christmas concert. My mom and I had

gotten there early to get a good seat - front row! The concert was

so cute and I was enjoying myself so much and then 'it' happened.

Two kids sitting on benches up on stage started looking around. One

little boy pointed to Halle and just stared - then whispered

something to the little girl beside him and she looked down at

Halle - they stared at her and then started laughing. My heart

which had been beaming with pride at my older daughter's

performance, felt like it cracked and fell into the pit of my

stomach. I was so angry at how I was feeling - racting to two 6 year

olds. But it hurt so much. I know you all have dealt with this

probably more then any of you would have ever liked to.

How do I do it?? How do I harden myself so that these stares and

comments don't hurt? I just wanted to grab Halle and run as fast as

I could - home to where it is safe - where she is accepted for who

she is and what she looks like. It also gave me a scary look into

the future - to what lies ahead for her. I will take on all the

bullies but her?? How do I teach her when I don't know myself?

Thank you all for listening - it helps to get this out. My hubby is

just such an optimist by nature - unfortunately I'm the pessimist.

He just shrugged it off and said not to worry about what other

people think. If it were that easy, I would....

And after reading all the posts about different procedures,

different methods, different doctors, different everything!!! I just

feel overwhelmed. Where do I start? I talked to Dr. Jordan in Ottawa

who called me and told me he has done lots of bleph cases....he

wants to see us next summer for a consult and to send pics of Halle

in the meantime. He is confident that if the eye doc here says her

vision isn't impaired then we just wait. Should i be talking to

other docs? Sending pics to them? We are so far from ANYWHERE there

is no way we can afford to start travelling to meet these doctors.

HELP GIRLS, I FEEL LIKE I'M DROWNING WITH INFORMATION OR LACK

THEREOF!!

I'll sign off now - thanks to anyone who can help or guide me....I

feel like such a pitiful excuse for a person and/or mother. I'm

supposed to be in control, have a plan, like i usually do...not this

time...

December 10, 2004

Hi, your mail has made me cry!! please please dont feel bad for feeling what all of us have felt at one time or another (having children does this to you - not necessarily with BPES) You are a wonderful mother (if you werent you wouldnt be feeling what you are).

I have BPES and so does my daughter Emy, (9yrs old). I used to get teased a lot at school, especially because in those days we waited for the operation until we were 14!! I was the first person to have BPES in our family so noone knew what it was or how to deal with it. I found out for myself to just keep smiling. As simple as this is it really works. If someone makes a comment or looks just smile at them! This trick is great for adults. For kids the way we deal with them is by explaining. I have bought Emy up to understand that other children dont mean to be horrid, they just dont understand. She now knows to explain to anyone who says anything (actually I cant remember the last time any of us had to do this). She tells them what it is, what she has been through. It does really work (the more open you are with BPES the better equipped Halle will be to deal with children in school.

In your situation I would have smiled and thought poor things dont understand, waited until after the show, gone to them or there mum and explained why she looks slightly different - its hard to do it calmly when inside you just want to scream - but believe me the first time you do it, it feels good. Most kids wont respond to you but probably just walk off, but it will make them think the next time. Be as nice as possible and your daughter will learn from you what to do and how to deal with it.

Everything you are feeling is absolutely normal, I can guarantee you will get many responses saying this. You are loving caring mum who wants to protect your beautfiful daughter.

The other peace of advice I can give, is as she goes through the school system get your principle/teacher involved in helping you. My daughter had two boys 2 years older than her, calling her a name, she felt she couldnt deal with it so went to tell her teacher, the principle of the school happened to be in the room. She dealt with this straight away saying is was a racist comment and would be dealt as such, informed the boys parents and wrote it in the school book. I felt this, at the time, was too strong, as you just get used to dealing with it.

However, it worked, since then noone else has ever said anything. I did say If it happened again I would go into the school and explain it to all the children, what it was and the operations etc. This would again inform all kids so next time they might think - but there honestly hasnt been a next time.

These incidents have been few and far between, everyone that knows my daughter knows her to be Emy, a loving caring happy girl.

I hope this helps a little.

Clare xxxxx

newhavenmama <newhavenmama@...> wrote:

Hi all,I know you will understand this post and the feelings I am having.Since Halle's diagnosis last month (at 7mos), yesterday was the first day that I felt - well just so sad.It was my daughter's Grade 1 Christmas concert. My mom and I had gotten there early to get a good seat - front row! The concert was so cute and I was enjoying myself so much and then 'it' happened. Two kids sitting on benches up on stage started looking around. One little boy pointed to Halle and just stared - then whispered something to the little girl beside him and she looked down at Halle - they stared at her and then started laughing. My heart which had been beaming with pride at my older daughter's performance, felt like it cracked and fell into the pit of my stomach. I was so angry at how I was feeling - racting to two 6 year

olds. But it hurt so much. I know you all have dealt with this probably more then any of you would have ever liked to.How do I do it?? How do I harden myself so that these stares and comments don't hurt? I just wanted to grab Halle and run as fast as I could - home to where it is safe - where she is accepted for who she is and what she looks like. It also gave me a scary look into the future - to what lies ahead for her. I will take on all the bullies but her?? How do I teach her when I don't know myself?Thank you all for listening - it helps to get this out. My hubby is just such an optimist by nature - unfortunately I'm the pessimist. He just shrugged it off and said not to worry about what other people think. If it were that easy, I would....And after reading all the posts about different procedures, different methods, different doctors, different everything!!! I just feel overwhelmed. Where do I start?

I talked to Dr. Jordan in Ottawa who called me and told me he has done lots of bleph cases....he wants to see us next summer for a consult and to send pics of Halle in the meantime. He is confident that if the eye doc here says her vision isn't impaired then we just wait. Should i be talking to other docs? Sending pics to them? We are so far from ANYWHERE there is no way we can afford to start travelling to meet these doctors. HELP GIRLS, I FEEL LIKE I'M DROWNING WITH INFORMATION OR LACK THEREOF!! I'll sign off now - thanks to anyone who can help or guide me....I feel like such a pitiful excuse for a person and/or mother. I'm supposed to be in control, have a plan, like i usually do...not this time...

December 10, 2004

Hi Donna,

I have the same apprehensions and experiences that you

are having now. In addition, the stares, the teasing,

the pointing and the laughters were all experiences

that I personally dealt with since I have BPES. When

Jasmine was born, the first thought that came to my

mind was, " Oh, crap...she is going to go through hell

like how I did! " and I was so depressed for weeks. I

was guilty for passing on this damn gene to her. I

was devastaed for knowing how her future will hold and

all the teasing and laughter she will bear. It broke

my heart knowing that there is a 100% guarantee

hardship in her life.

I'll tell you my experience. When Jasmine was 3

months, a rude lady in the restroom asked me if my

daughter was blind...becuase she has small eyes. I

snapped back at her and asked her what the hell was

wrong with having small eyes (since it was obvious

that she had a small brain to even ask such stupid

question!) and this rude lady just started to

backpeddle her way out of an embarrassing situation.

I take my daughter out and I get the stares, the

pointing, the whispering. On top of all of this, I

myself STILL get those. How do I handle it? I handle

it with a smile. For each stares, whisper, I stare

right back at them and smile. For kids, well, kids

will be kids. Even if you had a " perfect " looking

child, she will get teased for something! Kids have a

way of finding some fault to tease about. You can go

up to the kids, and mention how you noticed they were

pointing and whispering about your Halle and advised

them that Halle is fine and if they have any

questions, to feel free to ask. Kids are curious.

Kids rae not educated as we are as adults. So educate

them. And for those rude adults, its the same

concept...they are not educated and so take the moment

to educate them.

Adults, when they see a child that is " different " they

are immediately concerned and they want to satisfy

their curiosity. Take a deep breath and take the

moment to educate.

plus, my husband is like yours. The optimist. He

finds every stares a moment to brag about how cute his

daughter is! It can get annoying sometimes! :-)

I wish that he sometimes have the anger and

frustrations and the worries that I do. But, he is

not like that. I guess we are lucky to have such

optimist husbands to keep us balanced!

Take a moment and draw out a plan of attack...as I

like to call it. One thing that I wished my parents

did for me, was to instill some confidence in me when

battling these curious people. That is part of my

plan of attack for Jasmine. In addition, I plan to

advise her that she has BPES and that doesn't mean she

is a freak of nature. Plus, I will teach her on

dealing with the teasing. You have to realize that

one reason kids tease is because it's fun. So knowing

that, I will teach Jasmine to take the fun out of it.

Yes, so what someone comes up to her and teases her

about her small eyes, take the fun out of it and say

" so what's wrong with that? "

I made a promise to Jasmine that I will become a

stronger person and a confident mother. I can't

instill confidence if I myself don't have it. In

addition, I made a promise to her that I will get over

my past teasing so that I can teach her methods in

dealing with it.

You will be fine. Yes, it is hard to cope with the

stares. But instead of running from them, embrace

them. And see that those moments are moments to show

off the beauty in Halle. And take a moment for

yourself. You are a good mother. You will be a

strong mother and you will teach confidence to Halle.

You have to believe in your strengths!

I hope that I gave you a BIG cyber-hug!

Min

--- newhavenmama <newhavenmama@...> wrote:

>

> Hi all,

> I know you will understand this post and the

> feelings I am having.

>

> Since Halle's diagnosis last month (at 7mos),

> yesterday was the

> first day that I felt - well just so sad.

>

> It was my daughter's Grade 1 Christmas concert. My

> mom and I had

> gotten there early to get a good seat - front row!

> The concert was

> so cute and I was enjoying myself so much and then

> 'it' happened.

> Two kids sitting on benches up on stage started

> looking around. One

> little boy pointed to Halle and just stared - then

> whispered

> something to the little girl beside him and she

> looked down at

> Halle - they stared at her and then started

> laughing. My heart

> which had been beaming with pride at my older

> daughter's

> performance, felt like it cracked and fell into the

> pit of my

> stomach. I was so angry at how I was feeling -

> racting to two 6 year

> olds. But it hurt so much. I know you all have

> dealt with this

> probably more then any of you would have ever liked

> to.

>

> How do I do it?? How do I harden myself so that

> these stares and

> comments don't hurt? I just wanted to grab Halle and

> run as fast as

> I could - home to where it is safe - where she is

> accepted for who

> she is and what she looks like. It also gave me a

> scary look into

> the future - to what lies ahead for her. I will take

> on all the

> bullies but her?? How do I teach her when I don't

> know myself?

>

> Thank you all for listening - it helps to get this

> out. My hubby is

> just such an optimist by nature - unfortunately I'm

> the pessimist.

> He just shrugged it off and said not to worry about

> what other

> people think. If it were that easy, I would....

>

> And after reading all the posts about different

> procedures,

> different methods, different doctors, different

> everything!!! I just

> feel overwhelmed. Where do I start? I talked to Dr.

> Jordan in Ottawa

> who called me and told me he has done lots of bleph

> cases....he

> wants to see us next summer for a consult and to

> send pics of Halle

> in the meantime. He is confident that if the eye doc

> here says her

> vision isn't impaired then we just wait. Should i

> be talking to

> other docs? Sending pics to them? We are so far

> from ANYWHERE there

> is no way we can afford to start travelling to meet

> these doctors.

> HELP GIRLS, I FEEL LIKE I'M DROWNING WITH

> INFORMATION OR LACK

> THEREOF!!

>

> I'll sign off now - thanks to anyone who can help or

> guide me....I

> feel like such a pitiful excuse for a person and/or

> mother. I'm

> supposed to be in control, have a plan, like i

> usually do...not this

> time...

>

__________________________________________________

December 10, 2004

Dear Newhavenmamma (sorry don't know your name)

This is to send you some really BIG CYBER HUGGGSSS and to say i really know how it feels, having experienced similar situations when Evie was baby - it's okay to feel angry and sad and hurt by people's reactions,even if they are only children - you are absolutely normal to feel the way you do so please don't give yourself a hard time about what you feel. Evie's Dad was similar to your husband but I think he did feel it too, he just had different way of coping with it.

It does get better with time (honestly!) and what I would say is that it's really important to get all the support you can for yourself so that you can support Halle as she makes her way in the world. Have you got someone you are close to that you can go and be with to express your sadness etc? I always felt it was important for Evie that I didn't show my anger and sadness while she was around because I wanted to remain positive and focus on everything else about her that is special and wonderful.

Just to illustrate a similar thing but for entirely different reasons I went to Evie's schoolplay yesterday and was very proud as she had one of the main roles - she was doing great but then.......her skirt fell down, not all the way but enough to show her knickers!! and what did everyone do? they laughed! Evie carrried on but looked visibly upset as she finished her piece. At the end of the play she eventually and reluctantly came on to take her bow but only for a couple of seconds because she took one look at the audience and fled in tears. At this point I wanted to stand up and shout at everyone for laughing I felt so angry but I just went back stage where she was sobbing her heart out and comforted her and joked with her and told her how great she is until she felt okay.

A couple of people made a point of coming to tell her how well she did and I bless them for that.

She had another performance to do today and she was brave enough to do it - she phoned me from her Dad's just now to tell me it all went okay - she made sure she was wearing tights and her shorts underneath the skirt, just in case!!

I'm sure that everyone who laughed at her realised how upsetting that was for an 8 year old and hopefully felt a bit ashamed too!!

I hope this helps

All the best

Shena

blepharophimosis In need of a "Cyber-Hug"!

Hi all,I know you will understand this post and the feelings I am having.Since Halle's diagnosis last month (at 7mos), yesterday was the first day that I felt - well just so sad.It was my daughter's Grade 1 Christmas concert. My mom and I had gotten there early to get a good seat - front row! The concert was so cute and I was enjoying myself so much and then 'it' happened. Two kids sitting on benches up on stage started looking around. One little boy pointed to Halle and just stared - then whispered something to the little girl beside him and she looked down at Halle - they stared at her and then started laughing. My heart which had been beaming with pride at my older daughter's performance, felt like it cracked and fell into the pit of my stomach. I was so angry at how I was feeling - racting to two 6 year olds. But it hurt so much. I know you all have dealt with this probably more then any of you would have ever liked to.How do I do it?? How do I harden myself so that these stares and comments don't hurt? I just wanted to grab Halle and run as fast as I could - home to where it is safe - where she is accepted for who she is and what she looks like. It also gave me a scary look into the future - to what lies ahead for her. I will take on all the bullies but her?? How do I teach her when I don't know myself?Thank you all for listening - it helps to get this out. My hubby is just such an optimist by nature - unfortunately I'm the pessimist. He just shrugged it off and said not to worry about what other people think. If it were that easy, I would....And after reading all the posts about different procedures, different methods, different doctors, different everything!!! I just feel overwhelmed. Where do I start? I talked to Dr. Jordan in Ottawa who called me and told me he has done lots of bleph cases....he wants to see us next summer for a consult and to send pics of Halle in the meantime. He is confident that if the eye doc here says her vision isn't impaired then we just wait. Should i be talking to other docs? Sending pics to them? We are so far from ANYWHERE there is no way we can afford to start travelling to meet these doctors. HELP GIRLS, I FEEL LIKE I'M DROWNING WITH INFORMATION OR LACK THEREOF!! I'll sign off now - thanks to anyone who can help or guide me....I feel like such a pitiful excuse for a person and/or mother. I'm supposed to be in control, have a plan, like i usually do...not this time...

December 10, 2004

Clare,

You gave me the same advice for Jasmine and the

smiling really DOES work! Thank you for the wonderful

technique!

Donna,

Clare is a blessing in disguise. She has personally

helped me to deal with all the emotions you are having

now. She is right about the smiling...it really

works. Sure it was hard for me to do at first...cuz

the first thing I wanted to do was smash peoples

heads! But once the smiling appears on my face...all

the negative emotions disappeared and it opened up a

window of opportunity for the folks to come up closer

and admire how cute Jasmine is. You will get through

this. Trust me! I had a very hard time and it was

due to people like Clare that helped me.

Another cyber-hug to you!

Min

--- Clare Teale <clareteale@...> wrote:

> Hi, your mail has made me cry!! please please dont

> feel bad for feeling what all of us have felt at one

> time or another (having children does this to you -

> not necessarily with BPES) You are a wonderful

> mother (if you werent you wouldnt be feeling what

> you are).

>

> I have BPES and so does my daughter Emy, (9yrs old).

> I used to get teased a lot at school, especially

> because in those days we waited for the operation

> until we were 14!! I was the first person to have

> BPES in our family so noone knew what it was or how

> to deal with it. I found out for myself to just

> keep smiling. As simple as this is it really works.

> If someone makes a comment or looks just smile at

> them! This trick is great for adults. For kids the

> way we deal with them is by explaining. I have

> bought Emy up to understand that other children dont

> mean to be horrid, they just dont understand. She

> now knows to explain to anyone who says anything

> (actually I cant remember the last time any of us

> had to do this). She tells them what it is, what

> she has been through. It does really work (the more

> open you are with BPES the better equipped Halle

> will be to deal with children in school.

>

> In your situation I would have smiled and thought

> poor things dont understand, waited until after the

> show, gone to them or there mum and explained why

> she looks slightly different - its hard to do it

> calmly when inside you just want to scream - but

> believe me the first time you do it, it feels good.

> Most kids wont respond to you but probably just walk

> off, but it will make them think the next time. Be

> as nice as possible and your daughter will learn

> from you what to do and how to deal with it.

>

> Everything you are feeling is absolutely normal, I

> can guarantee you will get many responses saying

> this. You are loving caring mum who wants to

> protect your beautfiful daughter.

>

> The other peace of advice I can give, is as she goes

> through the school system get your principle/teacher

> involved in helping you. My daughter had two boys 2

> years older than her, calling her a name, she felt

> she couldnt deal with it so went to tell her

> teacher, the principle of the school happened to be

> in the room. She dealt with this straight away

> saying is was a racist comment and would be dealt as

> such, informed the boys parents and wrote it in the

> school book. I felt this, at the time, was too

> strong, as you just get used to dealing with it.

>

> However, it worked, since then noone else has ever

> said anything. I did say If it happened again I

> would go into the school and explain it to all the

> children, what it was and the operations etc. This

> would again inform all kids so next time they might

> think - but there honestly hasnt been a next time.

>

> These incidents have been few and far between,

> everyone that knows my daughter knows her to be Emy,

> a loving caring happy girl.

>

> I hope this helps a little.

>

> Clare xxxxx

>

> newhavenmama <newhavenmama@...> wrote:

>

> Hi all,

> I know you will understand this post and the

> feelings I am having.

>

> Since Halle's diagnosis last month (at 7mos),

> yesterday was the

> first day that I felt - well just so sad.

>

> It was my daughter's Grade 1 Christmas concert. My

> mom and I had

> gotten there early to get a good seat - front row!

> The concert was

> so cute and I was enjoying myself so much and then

> 'it' happened.

> Two kids sitting on benches up on stage started

> looking around. One

> little boy pointed to Halle and just stared - then

> whispered

> something to the little girl beside him and she

> looked down at

> Halle - they stared at her and then started

> laughing. My heart

> which had been beaming with pride at my older

> daughter's

> performance, felt like it cracked and fell into the

> pit of my

> stomach. I was so angry at how I was feeling -

> racting to two 6 year

> olds. But it hurt so much. I know you all have

> dealt with this

> probably more then any of you would have ever liked

> to.

>

> How do I do it?? How do I harden myself so that

> these stares and

> comments don't hurt? I just wanted to grab Halle and

> run as fast as

> I could - home to where it is safe - where she is

> accepted for who

> she is and what she looks like. It also gave me a

> scary look into

> the future - to what lies ahead for her. I will take

> on all the

> bullies but her?? How do I teach her when I don't

> know myself?

>

> Thank you all for listening - it helps to get this

> out. My hubby is

> just such an optimist by nature - unfortunately I'm

> the pessimist.

> He just shrugged it off and said not to worry about

> what other

> people think. If it were that easy, I would....

>

> And after reading all the posts about different

> procedures,

> different methods, different doctors, different

> everything!!! I just

> feel overwhelmed. Where do I start? I talked to Dr.

> Jordan in Ottawa

> who called me and told me he has done lots of bleph

> cases....he

> wants to see us next summer for a consult and to

> send pics of Halle

> in the meantime. He is confident that if the eye doc

> here says her

> vision isn't impaired then we just wait. Should i

> be talking to

> other docs? Sending pics to them? We are so far

> from ANYWHERE there

> is no way we can afford to start travelling to meet

> these doctors.

> HELP GIRLS, I FEEL LIKE I'M DROWNING WITH

> INFORMATION OR LACK

> THEREOF!!

>

> I'll sign off now - thanks to anyone who can help or

> guide me....I

> feel like such a pitiful excuse for a person and/or

> mother. I'm

> supposed to be in control, have a plan, like i

> usually do...not this

> time...

>

December 10, 2004

Hi all,

I´m the father of ANA and I am the pesimist. Smiling is not so easy. When

kids stare my little girl and tease her or call her ugly I can not smile.

It hurts too much, moreover because she is the most beautiful girl in the

world to me. I don´t mind to suffer myself, the actual ordeal is her

suffering. Anyway yo have my cyber-hug I surely understand you.

>From: " newhavenmama " <newhavenmama@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis In need of a " Cyber-Hug " !

>Date: Fri, 10 Dec 2004 16:26:21 -0000

>

>Hi all,

>I know you will understand this post and the feelings I am having.

>

>Since Halle's diagnosis last month (at 7mos), yesterday was the

>first day that I felt - well just so sad.

>

>It was my daughter's Grade 1 Christmas concert. My mom and I had

>gotten there early to get a good seat - front row! The concert was

>so cute and I was enjoying myself so much and then 'it' happened.

>Two kids sitting on benches up on stage started looking around. One

>little boy pointed to Halle and just stared - then whispered

>something to the little girl beside him and she looked down at

>Halle - they stared at her and then started laughing. My heart

>which had been beaming with pride at my older daughter's

>performance, felt like it cracked and fell into the pit of my

>stomach. I was so angry at how I was feeling - racting to two 6 year

>olds. But it hurt so much. I know you all have dealt with this

>probably more then any of you would have ever liked to.

>

>How do I do it?? How do I harden myself so that these stares and

>comments don't hurt? I just wanted to grab Halle and run as fast as

>I could - home to where it is safe - where she is accepted for who

>she is and what she looks like. It also gave me a scary look into

>the future - to what lies ahead for her. I will take on all the

>bullies but her?? How do I teach her when I don't know myself?

>

>Thank you all for listening - it helps to get this out. My hubby is

>just such an optimist by nature - unfortunately I'm the pessimist.

>He just shrugged it off and said not to worry about what other

>people think. If it were that easy, I would....

>

>And after reading all the posts about different procedures,

>different methods, different doctors, different everything!!! I just

>feel overwhelmed. Where do I start? I talked to Dr. Jordan in Ottawa

>who called me and told me he has done lots of bleph cases....he

>wants to see us next summer for a consult and to send pics of Halle

>in the meantime. He is confident that if the eye doc here says her

>vision isn't impaired then we just wait. Should i be talking to

>other docs? Sending pics to them? We are so far from ANYWHERE there

>is no way we can afford to start travelling to meet these doctors.

>HELP GIRLS, I FEEL LIKE I'M DROWNING WITH INFORMATION OR LACK

>THEREOF!!

>

>I'll sign off now - thanks to anyone who can help or guide me....I

>feel like such a pitiful excuse for a person and/or mother. I'm

>supposed to be in control, have a plan, like i usually do...not this

>time...

>

December 10, 2004

Dear Newhavenmama,

Being a not native English speaker/writer it's very difficult to share my feelings, emotions and history, in proper english, with you. Our son René (32 now) has BPES and when he was young nobody even knew the word. When on april 2 this year his daughter was born we recognised immediately that something was wrong and by visiting the internet we learned about BPES. Now, after 32 years, we could tell our son and his wife the story.

We have had several situations as you discribed in your posting and I can assure you we know the feelings and anger. One time I could not control myself, when we were in the Amsterdam zoo, René 4 years old, a man looked at us from a distance, came to us kneeled down in front of René, looked him in the eyes and said thats not normal... What is wrong with his eyes, he looks like a chinese. I think René did not even realise what happened nor did the man because my left fist hit him on the nose and my right fist on the jaw. As both nose and jaw were broken the man had to be hospitalised. A police officer came to me and wanted to protocolise the incident when René said to him "that ugly man called me not normal and a chinese, thats why my daddy punched him." A wittnes confirmed the story and the policeman said to me, I have to fetch another pencil this one is empty, I'll be back in 20 minutes or so, winkt to us with his left eye and left the scene. So did we.

I learned from that incident and my wife and I discussed the matter with the four year old explaining him that he was the one-in-a-millon-birth with smaller eyes. We decided the best thing to do is react actively to others. When adults staring at him, my wife or I would ask politely, is there something wrong or is there something you would like to know? When children looking at him or laughing we asked what is so funny and mostly you get an honoust answer which gives the possibility to explain. When people asking us about him (believe me some people do..) we explained the matter and telling his eyesight capability is like an eagle. Et cetera..

Halle is going to have unpleasant confrontations you can count on that and I think the best way to support her is being honest with her and openly discuss things. With the neighbours and their children with the school management and teacher, with her class colleagues, with the people from the sportschool et cetera. Running away may look the best thing from time to time, but in my opinion it is far from that. It does not provide safety for Halle to hide her from the evil world. You dont have to be an optimist try to be a realist (can be very difficult sometimes).

When my wife and our daughter Tanja (28 and no BPES) discussed s syndrom, my wife started crying, she went imaginly through so many incidents that happened with René in the past and she was so sorry for . Tanja said but Mom, do you think René is an unhappy person? Do you think his character is deformed due to that? Do you believe he is unsuccesfull? Do you think he has an unhappy marriage? Well René is an openminded but tough and disciplined man. He has a management position in a very large merchant bank. He has many friends some of them from the basic school more then 20 years ago. He is 100% accepted by his family in law (very large family). He and his wife look very happy! 's Chinese name (the mother is ethnic Chinese) is Xiao-Chin which means Morning sunshine and that's what she is, one just have to look at her ans she smiles, with 8 months she loves to give people a high five. So why are you so unhappy about the future of your granddaughter?

Dear Newhavenmama, I hope my story helps a little bit. Give Halle a big hug from us here in Holland and enjoy life with her.

Regards,

Dolph

blepharophimosis In need of a "Cyber-Hug"!

Hi all,I know you will understand this post and the feelings I am having.Since Halle's diagnosis last month (at 7mos), yesterday was the first day that I felt - well just so sad.It was my daughter's Grade 1 Christmas concert. My mom and I had gotten there early to get a good seat - front row! The concert was so cute and I was enjoying myself so much and then 'it' happened. Two kids sitting on benches up on stage started looking around. One little boy pointed to Halle and just stared - then whispered something to the little girl beside him and she looked down at Halle - they stared at her and then started laughing. My heart which had been beaming with pride at my older daughter's performance, felt like it cracked and fell into the pit of my stomach. I was so angry at how I was feeling - racting to two 6 year olds. But it hurt so much. I know you all have dealt with this probably more then any of you would have ever liked to.How do I do it?? How do I harden myself so that these stares and comments don't hurt? I just wanted to grab Halle and run as fast as I could - home to where it is safe - where she is accepted for who she is and what she looks like. It also gave me a scary look into the future - to what lies ahead for her. I will take on all the bullies but her?? How do I teach her when I don't know myself?Thank you all for listening - it helps to get this out. My hubby is just such an optimist by nature - unfortunately I'm the pessimist. He just shrugged it off and said not to worry about what other people think. If it were that easy, I would....And after reading all the posts about different procedures, different methods, different doctors, different everything!!! I just feel overwhelmed. Where do I start? I talked to Dr. Jordan in Ottawa who called me and told me he has done lots of bleph cases....he wants to see us next summer for a consult and to send pics of Halle in the meantime. He is confident that if the eye doc here says her vision isn't impaired then we just wait. Should i be talking to other docs? Sending pics to them? We are so far from ANYWHERE there is no way we can afford to start travelling to meet these doctors. HELP GIRLS, I FEEL LIKE I'M DROWNING WITH INFORMATION OR LACK THEREOF!! I'll sign off now - thanks to anyone who can help or guide me....I feel like such a pitiful excuse for a person and/or mother. I'm supposed to be in control, have a plan, like i usually do...not this time...

December 12, 2004

Hi there,

Well your story was EXACTLY what happened to me the othe week!!! My older son, who is 5 just had his 1st school concert also, after the concert had started, of course Ethan did not feel like sitting down, so I got him out of his stroller, and then of course being a toddler, he wanted to run around...so I had to just follow him round, well he then headed for the stage where all the children were standing, 2 boys on the end started laughing and steering at Ethan, and I felt like I had the whole adult audience looking as well, because I know they were wondering about Ethans eyes!

You get this hot feeling inside, and just want to scream STOP STEERING AT MY BEAUTIFUL BABY! Kids are cruel...I have a couple bad incidences at my sons school, once an 8 year old girl turned to her friend and said *that baby looks hideous*! and just the other day a 5 year old boy in my sons class, was down in Ethans face and was waving his hand saying *hi weirdo*!!! (kids seem to think he is blind and aways get right in his face and wave there hands) Well you can imagine, I let them have it, in a civilised way, as it was at school! but yes, I think children are the worst and that is why I have held off on putting Ethan into preschool, I am SCARED for the way he may be teased, I will feel helpless and want to strangle the kids doing it to him! not literally:)

SO be sure to know your not the only one going through this, it SUX, to put it into words really! We look at my son and think how absolutely precious and adorable he is, and when we get comments from strangers that he is, it all outweighs the negative responces we recieve:)

Take care:)

Leanne and family (New-Zealand)

-- blepharophimosis In need of a "Cyber-Hug"!