Re: BPES will not define who you are...

[Guest guest]

Hello , Just this year I have been talking with Aedan more about his eyes, ive showed him pictures of little cuties from this site. We just recently went to see the surgeon who did his first and only so far ptosis surgery because one of his lids seemed to drop a stitch. Aedan was very much a part of the office visit, we talked about the other operations ( transnasal) to make his eyes look bigger, he informed me he is not interested in that. It seems he has reached a maturation level that he is ready to talk a bit more. He even discusses it at school. So I guess he is approaching his different eyes with the same outlook as others, giving info to the curious.

In a message dated 6/4/2009 10:58:55 A.M. Eastern Daylight Time, thomas_far@... writes:

Thanks very much for this beautfiul and inspiring e-mail. I have a folder where I keep these particular ones where I know I will need to use them for the future.

My daughter a is 5 years old and I have only on several occasions thus far had to address her eyes with her directly. She once asked me, "Mommy, why are my eyes smaller than your "big" eyes. To which I replied, "no two people are alike (unless they are identical twins). Some people are taller than others or have brown hair vs. black hair, long face vs. round face". I do wonder what I will say going forward as she becomes more aware and what is the best way for me to teach her how to deal with what she has.

These posts really help me to know how to help her. If any others have any other suggestions/tips for coping as she gets older, those would sooo helpful.

Thanks again to all of you who provide your stories of inspiration and suggestions on how to deal with this. They are of enormous help!

(Toronto-Canada)

From: <michelle888_99 >blepharophimosis Sent: Wednesday, June 3, 2009 10:12:47 AMSubject: blepharophimosis BPES will not define who you are...

Hi group,Let me first say finding this group has been the greatest discovery on the internet I have found. I have spoke to wonderful people and have found great comfort in knowing that I am not the only one who battles with BPES. This is for everyone, wheather you are affected with BPES or have children affected or family. Growing up is the HARDEST part of BPES. The surgeries, the teasing, the explaining when asked "what's wrong with your eyes?" I felt gorwing up, very isolated, however, I never was alone. I ended up top of my class, and voted most popular in my high school year book. That goes to show that BPES will not impact your studies or friendships. I had many friends, I had a steady boyfriends. Not once did BPES ever define me, because I wouldn't let it. I have found, in my 30 years of life, kids can be cruel, no matter what you are ailed with, short, fat, tall, skinny, BPES ... children will find anything to pick on you for. I have found that adults, are curious, they just want to know what is so different about the eyes. Knowledge is power. I now explain it whenever I am asked, or get those looks of curiousity. I have been blessed with a wonderful life, despite my BPES. I am a smart, happy, beautiful soul and my outer apperance should have no effect on that. I have gone on in school to get my Master's Degree in Business and before becoming a stay at home mother (we adopted), I was running a legal department in a fortune 500 company, overseeing 155 employees. BPES never once impacted my career goals. This post is not to boast, it is merely to give people hope. I know many people are struggling with the obsticles their children or themselves will or have faced. Take comfort in knowing that BPES is a part of what makes us individuals and unique. I wear my eyes proudly. I know I stick out in a crowd, but that is because of the person I am, not because of BPES. God bless.USA - Massachusetts3 surgeries (2 at Boston's Children's Hospital and one at Boston's Mass Eye and Ear)

All new - Get a sneak peak at messages with a handy reading pane.

[Guest guest]

Thanks very much for this beautfiul and inspiring e-mail. I have a folder where I keep these particular ones where I know I will need to use them for the future.

My daughter a is 5 years old and I have only on several occasions thus far had to address her eyes with her directly. She once asked me, "Mommy, why are my eyes smaller than your "big" eyes. To which I replied, "no two people are alike (unless they are identical twins). Some people are taller than others or have brown hair vs. black hair, long face vs. round face". I do wonder what I will say going forward as she becomes more aware and what is the best way for me to teach her how to deal with what she has.

These posts really help me to know how to help her. If any others have any other suggestions/tips for coping as she gets older, those would sooo helpful.

Thanks again to all of you who provide your stories of inspiration and suggestions on how to deal with this. They are of enormous help!

(Toronto-Canada)

From: <michelle888_99@...>blepharophimosis Sent: Wednesday, June 3, 2009 10:12:47 AMSubject: blepharophimosis BPES will not define who you are...

Hi group,Let me first say finding this group has been the greatest discovery on the internet I have found. I have spoke to wonderful people and have found great comfort in knowing that I am not the only one who battles with BPES. This is for everyone, wheather you are affected with BPES or have children affected or family. Growing up is the HARDEST part of BPES. The surgeries, the teasing, the explaining when asked "what's wrong with your eyes?" I felt gorwing up, very isolated, however, I never was alone. I ended up top of my class, and voted most popular in my high school year book. That goes to show that BPES will not impact your studies or friendships. I had many friends, I had a steady boyfriends. Not once did BPES ever define me, because I wouldn't let it. I have found, in my 30 years of life, kids can be cruel, no matter what you are ailed with, short, fat, tall, skinny, BPES ... children will find anything to pick on

you for. I have found that adults, are curious, they just want to know what is so different about the eyes. Knowledge is power. I now explain it whenever I am asked, or get those looks of curiousity. I have been blessed with a wonderful life, despite my BPES. I am a smart, happy, beautiful soul and my outer apperance should have no effect on that. I have gone on in school to get my Master's Degree in Business and before becoming a stay at home mother (we adopted), I was running a legal department in a fortune 500 company, overseeing 155 employees. BPES never once impacted my career goals. This post is not to boast, it is merely to give people hope. I know many people are struggling with the obsticles their children or themselves will or have faced. Take comfort in knowing that BPES is a part of what makes us individuals and unique. I wear my eyes proudly. I know I stick out in a crowd, but that is because of the person I am, not

because of BPES. God bless.USA - Massachusetts3 surgeries (2 at Boston's Children's Hospital and one at Boston's Mass Eye and Ear)

All new - Get a sneak peak at messages with a handy reading pane.

[Guest guest]

Aedan is adorable!! Jun 4, 2009 05:22:12 PM, blepharophimosis wrote:===========================================Hello , Just this year I have been talking with Aedan more about his eyes, ive showed him pictures of little cuties from this site. We just recently went to see the surgeon who did his first and only so far ptosis surgery because one of his lids seemed to drop a stitch. Aedan was very much a part of the office visit, we talked about the other operations ( transnasal) to make his eyes look bigger, he informed me he is not interested in that. It seems he has reached a maturation level that he is ready to talk a bit more. He even discusses it at school. So I guess he is approaching his different eyes with the same outlook as others, giving info to the curious. In a message dated 6/4/2009 10:58:55 A.M. Eastern Daylight Time, thomas_far@... writes: Thanks very much for this beautfiul and inspiring e-mail. I have a folder where I keep these particular ones where I know I will need to use them for the future. My daughter a is 5 years old and I have only on several occasions thus far had to address her eyes with her directly. She once asked me, "Mommy, why are my eyes smaller than your "big" eyes. To which I replied, "no two people are alike (unless they are identical twins). Some people are taller than others or have brown hair vs. black hair, long face vs. round face". I do wonder what I will say going forward as she becomes more aware and what is the best way for me to teach her how to deal with what she has. These posts really help me to know how to help her. If any others have any other suggestions/tips for coping as she gets older, those would sooo helpful. Thanks again to all of you who provide your stories of inspiration and suggestions on how to deal with this. They are of enormous help! (Toronto-Canada) From: michelle888_99@...>blepharophimosis Sent: Wednesday, June 3, 2009 10:12:47 AMSubject: blepharophimosis BPES will not define who you are...Hi group,Let me first say finding this group has been the greatest discovery on the internet I have found. I have spoke to wonderful people and have found great comfort in knowing that I am not the only one who battles with BPES. This is for everyone, wheather you are affected with BPES or have children affected or family. Growing up is the HARDEST part of BPES. The surgeries, the teasing, the explaining when asked "what's wrong with your eyes?" I felt gorwing up, very isolated, however, I never was alone. I ended up top of my class, and voted most popular in my high school year book. That goes to show that BPES will not impact your studies or friendships. I had many friends, I had a steady boyfriends. Not once did BPES ever define me, because I wouldn't let it. I have found, in my 30 years of life, kids can be cruel, no matter what you are ailed with, short, fat, tall, skinny, BPES ... children will find anything to pick on you for. I have found that adults, are curious, they just want to know what is so different about the eyes. Knowledge is power. I now explain it whenever I am asked, or get those looks of curiousity. I have been blessed with a wonderful life, despite my BPES. I am a smart, happy, beautiful soul and my outer apperance should have no effect on that. I have gone on in school to get my Master's Degree in Business and before becoming a stay at home mother (we adopted), I was running a legal department in a fortune 500 company, overseeing 155 employees. BPES never once impacted my career goals. This post is not to boast, it is merely to give people hope. I know many people are struggling with the obsticles their children or themselves will or have faced. Take comfort in knowing that BPES is a part of what makes us individuals and unique. I wear my eyes proudly. I know I stick out in a crowd, but that is because of the person I am, not because of BPES. God bless.USA - Massachusetts3 surgeries (2 at Boston's Children's Hospital and one at Boston's Mass Eye and Ear) All new - Get a sneak peak at messages with a handy reading pane.

[Guest guest]

Thanks very much for much sending his pic. I'm so glad that he is happy and is able to talk openly about it. I do agree that talking about what you have is better in the short and long-term and doesn't leave people guessing or assuming things, giving them more reason to talk.

Take care and all the best!

mary

From: "pradding@..." <pradding@...>blepharophimosis Sent: Thursday, June 4, 2009 2:19:10 PMSubject: Re: Re: blepharophimosis BPES will not define who you are...

Aedan is adorable!! Jun 4, 2009 05:22:12 PM, blepharophimosis wrote:============ ========= ========= ========= ====Hello , Just this year I have been talking with Aedan more about his eyes, ive showed him pictures of little cuties from this site. We just recently went to see the surgeon who did his first and only so far ptosis surgery because one of his lids seemed to drop a stitch. Aedan was very much a part of the office visit, we talked about the other operations ( transnasal) to make his eyes look bigger, he informed me he is not interested in that. It seems he has reached a maturation level that he is ready to talk a bit more. He even discusses it at school. So I guess he is approaching his different eyes with the same outlook as others, giving info to the curious. In a message dated 6/4/2009 10:58:55 A.M. Eastern Daylight Time, thomas_far (DOT) ca writes: Thanks very

much for this beautfiul and inspiring e-mail. I have a folder where I keep these particular ones where I know I will need to use them for the future. My daughter a is 5 years old and I have only on several occasions thus far had to address her eyes with her directly. She once asked me, "Mommy, why are my eyes smaller than your "big" eyes. To which I replied, "no two people are alike (unless they are identical twins). Some people are taller than others or have brown hair vs. black hair, long face vs. round face". I do wonder what I will say going forward as she becomes more aware and what is the best way for me to teach her how to deal with what she has. These posts really help me to know how to help her. If any others have any other suggestions/ tips for coping as she gets older, those would sooo helpful. Thanks again to all of you who provide your stories of inspiration and suggestions on how to deal with this. They are of enormous help!

(Toronto-Canada) From: michelle888_ 99 (DOT) com>blepharophimosisSent: Wednesday, June 3, 2009 10:12:47 AMSubject: blepharophimosis BPES will not define who you are...Hi group,Let me first say finding this group has been the greatest discovery on the internet I have found. I have spoke to wonderful people and have found great comfort in knowing that I am not the only one who battles with BPES. This is for everyone, wheather you are affected with BPES or have children affected or family. Growing up is the HARDEST part of BPES. The surgeries, the teasing, the explaining when asked "what's wrong with your eyes?" I felt gorwing up, very isolated, however, I never was alone. I ended up top of my class, and voted most popular in my high school year book. That goes to show that BPES will not impact your studies or friendships. I had many friends, I had a steady boyfriends. Not

once did BPES ever define me, because I wouldn't let it. I have found, in my 30 years of life, kids can be cruel, no matter what you are ailed with, short, fat, tall, skinny, BPES ... children will find anything to pick on you for. I have found that adults, are curious, they just want to know what is so different about the eyes. Knowledge is power. I now explain it whenever I am asked, or get those looks of curiousity. I have been blessed with a wonderful life, despite my BPES. I am a smart, happy, beautiful soul and my outer apperance should have no effect on that. I have gone on in school to get my Master's Degree in Business and before becoming a stay at home mother (we adopted), I was running a legal department in a fortune 500 company, overseeing 155 employees. BPES never once impacted my career goals. This post is not to boast, it is merely to give people hope. I know many people are struggling with the obsticles

their children or themselves will or have faced. Take comfort in knowing that BPES is a part of what makes us individuals and unique. I wear my eyes proudly. I know I stick out in a crowd, but that is because of the person I am, not because of BPES. God bless.USA - Massachusetts3 surgeries (2 at Boston's Children's Hospital and one at Boston's Mass Eye and Ear)All new - Get a sneak peak at messages with a handy reading pane.

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[Guest guest]

Thank you for your encouraging email. It was rather timely as today I experienced a painful reminder of how cruel people (even adults) can be. My daughter, Paige (5), has BPES as do I, while my younger daughter (19 months), is unaffected. Today the three of us were out for lunch and I saw a women from another table look over at my daughter and then say to the woman sitting beside her, "look at that girl...something is wrong with her face." Needless to say, I was crushed and I couldn't help but just stare at the lady out of complete disbelief. The fact that an adult would say that about a 5 year old is crazy! And to top it all off, Paige has had 2 surgeries and does not need any additional surgery and I was sitting right

beside her, with the same BPES eyes! Sorry for the rant - I just had to get it out.

But as I read your email today , it also reminded me that there are a lot more people who have never noticed or cared what my eyes looked like. They just wanted to be my friend and my daughter will experience the same thing in her own life. I used to think about what I would have looked like without BPES, if I only had "normal eyes". But especially after having my daughter, I realized that this is exactly who I am supposed to be - the original blue-print, not a smudged copy. Everyone deals with BPES in their own way and I have simply shared a small way that I have come to terms with it. But I too will keep this email to share with my daughter and add it to my collection of encouragement!

From: <michelle888_99@...>blepharophimosis Sent: Wednesday, June 3, 2009 10:12:47 AMSubject: blepharophimosis BPES will not define who you are...

Hi group,Let me first say finding this group has been the greatest discovery on the internet I have found. I have spoke to wonderful people and have found great comfort in knowing that I am not the only one who battles with BPES. This is for everyone, wheather you are affected with BPES or have children affected or family. Growing up is the HARDEST part of BPES. The surgeries, the teasing, the explaining when asked "what's wrong with your eyes?" I felt gorwing up, very isolated, however, I never was alone. I ended up top of my class, and voted most popular in my high school year book. That goes to show that BPES will not impact your studies or friendships. I had many friends, I had a steady boyfriends. Not once did BPES ever define me, because I wouldn't let it. I have found, in my 30 years of life, kids can be cruel, no matter what you are ailed with, short, fat, tall, skinny, BPES ... children will find anything to pick on

you for. I have found that adults, are curious, they just want to know what is so different about the eyes. Knowledge is power. I now explain it whenever I am asked, or get those looks of curiousity. I have been blessed with a wonderful life, despite my BPES. I am a smart, happy, beautiful soul and my outer apperance should have no effect on that. I have gone on in school to get my Master's Degree in Business and before becoming a stay at home mother (we adopted), I was running a legal department in a fortune 500 company, overseeing 155 employees. BPES never once impacted my career goals. This post is not to boast, it is merely to give people hope. I know many people are struggling with the obsticles their children or themselves will or have faced. Take comfort in knowing that BPES is a part of what makes us individuals and unique. I wear my eyes proudly. I know I stick out in a crowd, but that is because of the person I am, not

because of BPES. God bless.USA - Massachusetts3 surgeries (2 at Boston's Children's Hospital and one at Boston's Mass Eye and Ear)

[Guest guest]

I have an 18 year old son named . He is the first in my family to have BPES. He has a brother that is 18 months younger. He does not have it. Their Dad left before was 2.

In my opinion there was never a more beautiful baby born than . When he was 1 and a half I took him out for ice cream in his stroller a women asked me if he was a mongoloid. I just cried.

I write this today for a reason... has well above average intelligence and a personality like no other. Last night he was awarded a scholarship towards University which he will attending in the fall. I couldn't be prouder. I admit there are now days that go by that I do not even think about his BPES. Although he has had nasal and eyelid surgery BPES is still quite noticeable. His intelligence and personality make it invisible within moments of meeting him.

I will always believe when God gave him his BPES he was extra special to him in many other ways. I've always told him everyone has something that is not perfect yours is visible but with most people it is not.

From: Harvey <happyappykd@...>blepharophimosis Sent: Thursday, June 4, 2009 7:36:00 PMSubject: Re: blepharophimosis BPES will not define who you are...

Thank you for your encouraging email. It was rather timely as today I experienced a painful reminder of how cruel people (even adults) can be. My daughter, Paige (5), has BPES as do I, while my younger daughter (19 months), is unaffected. Today the three of us were out for lunch and I saw a women from another table look over at my daughter and then say to the woman sitting beside her, "look at that girl...something is wrong with her face." Needless to say, I was crushed and I couldn't help but just stare at the lady out of complete disbelief. The fact that an adult would say that about a 5 year old is crazy! And to top it all off, Paige has had 2 surgeries and does not need any additional surgery and I was sitting right beside her, with the same BPES eyes! Sorry for the rant - I just had to get it out.

But as I read your email today , it also reminded me that there are a lot more people who have never noticed or cared what my eyes looked like. They just wanted to be my friend and my daughter will experience the same thing in her own life. I used to think about what I would have looked like without BPES, if I only had "normal eyes". But especially after having my daughter, I realized that this is exactly who I am supposed to be - the original blue-print, not a smudged copy. Everyone deals with BPES in their own way and I have simply shared a small way that I have come to terms with it. But I too will keep this email to share with my daughter and add it to my collection of encouragement!

From: <michelle888_ 99 (DOT) com>blepharophimosisSent: Wednesday, June 3, 2009 10:12:47 AMSubject: blepharophimosis BPES will not define who you are...

Hi group,Let me first say finding this group has been the greatest discovery on the internet I have found. I have spoke to wonderful people and have found great comfort in knowing that I am not the only one who battles with BPES. This is for everyone, wheather you are affected with BPES or have children affected or family. Growing up is the HARDEST part of BPES. The surgeries, the teasing, the explaining when asked "what's wrong with your eyes?" I felt gorwing up, very isolated, however, I never was alone. I ended up top of my class, and voted most popular in my high school year book. That goes to show that BPES will not impact your studies or friendships. I had many friends, I had a steady boyfriends. Not once did BPES ever define me, because I wouldn't let it. I have found, in my 30 years of life, kids can be cruel, no matter what you are ailed with, short, fat, tall, skinny, BPES ... children will find anything to pick on

you for. I have found that adults, are curious, they just want to know what is so different about the eyes. Knowledge is power. I now explain it whenever I am asked, or get those looks of curiousity. I have been blessed with a wonderful life, despite my BPES. I am a smart, happy, beautiful soul and my outer apperance should have no effect on that. I have gone on in school to get my Master's Degree in Business and before becoming a stay at home mother (we adopted), I was running a legal department in a fortune 500 company, overseeing 155 employees. BPES never once impacted my career goals. This post is not to boast, it is merely to give people hope. I know many people are struggling with the obsticles their children or themselves will or have faced. Take comfort in knowing that BPES is a part of what makes us individuals and unique. I wear my eyes proudly. I know I stick out in a crowd, but that is because of the person I am, not

because of BPES. God bless.USA - Massachusetts3 surgeries (2 at Boston's Children's Hospital and one at Boston's Mass Eye and Ear)