Re: How to build self confidence?

[Guest guest]

I love it, how candid!

Emalee Barrow

USA

From: claire.haun <claire.haun>Subject: blepharophimosis Re: How to build self confidence?blepharophimosisDate: Wednesday, August 26, 2009, 12:58 AM

Hi Kids really can be cruel can't they! I'm 32 and have Bleph and so do my 2 daughters. I had two surgeries in my early teens. Yes I got picked on because of my eyes but for some reason it never bothered me. I really don't think I was aware I looked different till about 7 or 8 years of age. I think that is due to the fact that my parents (neither have Bleph) never talked about it, not because they didn't want to but because they didn't see the need to as they saw me as no different to anyone else. I remember telling my dad one day that the kids at school said I have funny eyes, he told me "Yes they're a bit different but we don't think they're funny" I asked him what I should say when they said it and he told me to reply, in a very matter of fact sort of way, "Yes I do" So that's what I did and it I guess it worked because usually nothing more would be said about it. I was never

diagnosed with anything and the doctors told my parents I was a 'one-off' with my eyes, so I never had a name for what was different about them. I am a very open and talkative person so if the kids ever persisted with talking about my eyes I explained that my eyes were just smaller and upside down. We called them 'Upside Down Eyes' when I was growing up, I guess the doctors called it Inverted Epicanthic Folds!!I hope you grandson finds a way to not let his eyes effect him. I truly believe my eyes have made me the person I am today and I am so grateful for them. I also believe things like Bleph only happen to the people who can handle it!Take care(Australia)>> Hello all,> I am , a 62 year old mother of 2 grown daughters, now aged 40 and 34.

I was born with ptosis, and have no idea to this day where it may have originated in our family, if it had. As far as I was concerned as I was growing up, there was nobody else on the earth with ptosis. My parents, bless them, were not a lot of help in giving me the tools to deal with the torment other children, and yes, adults are capable of. I guess I grew up fairly aggressive and confrontational at times.> > We have 2 daughters, both born with ptosis, both have had surgeries. I feel that both of them have suffered from a great lack of self-confidence as they were growing up and went through the same torments and stupid questions by strangers. I think they've both been emotionally scarred and I don't think my advice and support helped them enough.> > My oldest daughter has a 4 year old son with blepharophimosis and a 6 year old son without. We had all hoped and believed he would be

treated differently in this more "tolerant" age, but he is not. > > How can we help him to be a confident, assertive (not aggressive :-)) child? What have you other parents done to make that happen?>------------ --------- --------- ------

[Guest guest]

Hello All,

I realize that this may be

some as a bit strange, but I truly don’t believe that BPES is that

critical a factor when it comes to self esteem. Most everyone has a

flaw of some description – a nose just a touch too big, an inability to

do simple math, hair that is too curly, or too straight. Even the people

we tend to think of as gorgeous see aspects of themselves that they fervently

wish they could change. The point here for all of us is that part of life

is learning to deal with the parts of ourselves that aren’t perfect and

accepting ourselves for who we are. BPES, in the grand scheme of things,

really isn’t much of much. Basically, we are talking about drooping

eyelids here.

Think about all the truly

difficult things that the average person comes up against in a lifetime –

the loss of loved ones, the failure of a marriage, economic difficulties –

the list can be added to ad infinitum. The point here is that drooping

eyelids, in the grand scheme of things, are not going to be even close to the

toughest thing that happens to us in our lives.

So back to self esteem.

All of us suffer sometimes, and those who manage to love themselves in

spite of the occasional low blow life deals them tend to fare best in this

world. Drooping eyelids are a drop in the bucket compared to some of the

really hard stuff that can happen. My point here is that self esteem is

built upon a foundation of self love and acceptance that the world will

sometimes give great things, and at other times rain down 20 flavors of

unadulterated misery upon us. And there will always be things that

shake our ability to love ourselves – our girlfriend (or boyfriend)

leaves us, the child we believed blessed and kept safe by god does not return

home from a war, we lose a job that we loved and kept us financially secure,

and, yes, the fact that some of us were born with eyes that are smaller than

most other people’s.

A sense of perspective is

warranted here. We are going to fight our whole lives to love ourselves,

and to find a secure place in this world. BPES will play but a tiny part

in this process.

All the best, Micah (my

father, myself, and my 6 year old daughter all have bleph)

From:

blepharophimosis [mailto:blepharophimosis ] On Behalf Of emalee

Sent: Saturday, August 29, 2009

1:28 AM

To:

blepharophimosis

Subject: Re: blepharophimosis

Re: How to build self confidence?

I love it, how candid!

Emalee Barrow

USA

--- On Wed, 8/26/09, Debra

Fehl <debrayusko@...>

wrote:

From: Debra Fehl <debrayusko@...>

Subject: Re: blepharophimosis Re: How to build self confidence?

blepharophimosis

Date: Wednesday, August 26, 2009, 6:41 PM

Dear All,

After 5 years of constant wondering about how our son with BPES would react

when asked about his eyes, we were so relieved that he had his own answer,

and so, we followed his lead:

Two young innocent boys said to Andy, " What is the matter with your

eyes? " Andy answered, " Nothing. That's just how they

are. "

We left it at that....He was 4 1/2 years old whe he came up with that on

his own. I hope he continues t be as frank and confident for his

whole life. Thanks for addressing this issue.

BEST, Debbie Fehl, NJ, USA

--- On Wed, 8/26/09, claire.haun <claire.haun>

wrote:

From: claire.haun <claire.haun>

Subject: blepharophimosis Re: How to build self confidence?

blepharophimosis

Date: Wednesday, August 26, 2009, 12:58 AM

Hi

Kids really can be cruel can't they! I'm 32 and have Bleph and so do

my 2 daughters. I had two surgeries in my early teens. Yes I

got picked on because of my eyes but for some reason it never bothered

me. I really don't think I was aware I looked different till about 7

or 8 years of age. I think that is due to the fact that my parents

(neither have Bleph) never talked about it, not because they didn't want to

but because they didn't see the need to as they saw me as no different to

anyone else. I remember telling my dad one day that the kids at

school said I have funny eyes, he told me " Yes they're a bit different

but we don't think they're funny " I asked him what I should say when

they said it and he told me to reply, in a very matter of fact sort of way,

" Yes I do " So that's what I did and it I guess it worked because

usually nothing more would be said about it. I was never diagnosed

with anything and the doctors told my parents I was a 'one-off' with my

eyes, so I never had a name for what was different about them. I am a

very open and talkative person so if the kids ever persisted with talking

about my eyes I explained that my eyes were just smaller and upside

down. We called them 'Upside Down Eyes' when I was growing up, I

guess the doctors called it Inverted Epicanthic Folds!!

I hope you grandson finds a way to not let his eyes effect him. I truly

believe my eyes have made me the person I am today and I am so grateful for

them. I also believe things like Bleph only happen to the people who

can handle it!

Take care

(Australia)

>

> Hello all,

> I am , a 62 year old mother of 2 grown daughters, now aged 40 and

34. I was born with ptosis, and have no idea to this day where it may

have originated in our family, if it had. As far as I was concerned

as I was growing up, there was nobody else on the earth with ptosis.

My parents, bless them, were not a lot of help in giving me the tools to

deal with the torment other children, and yes, adults are capable of.

I guess I grew up fairly aggressive and confrontational at times.

>

> We have 2 daughters, both born with ptosis, both have had

surgeries. I feel that both of them have suffered from a great lack

of self-confidence as they were growing up and went through the same

torments and stupid questions by strangers. I think they've both been

emotionally scarred and I don't think my advice and support helped them

enough.

>

> My oldest daughter has a 4 year old son with blepharophimosis and a 6

year old son without. We had all hoped and believed he would be

treated differently in this more " tolerant " age, but he is not.

>

> How can we help him to be a confident, assertive (not aggressive :-))

child? What have you other parents done to make that happen?

>

------------ --------- --------- ------

[Guest guest]

Sometimes I think with little kids, it's best to not attribute something to

bleph (or any other condition)

Like " she's shy because of her different looking eyes " or " did kids tease you in

school because your eyes are like that " It makes you start atributing things to

BPES. Better if you can just not go there.

Haven't we all been amazed by a friend or coworker who appears " perfect " and

fortunate in every way and yet constantly doubts herself?

> >

> > Hello all,

> > I am , a 62 year old mother of 2 grown daughters, now aged 40 and 34.

> I was born with ptosis, and have no idea to this day where it may have

> originated in our family, if it had. As far as I was concerned as I was

> growing up, there was nobody else on the earth with ptosis. My parents,

> bless them, were not a lot of help in giving me the tools to deal with the

> torment other children, and yes, adults are capable of. I guess I grew up

> fairly aggressive and confrontational at times.

> >

> > We have 2 daughters, both born with ptosis, both have had surgeries. I

> feel that both of them have suffered from a great lack of self-confidence as

> they were growing up and went through the same torments and stupid questions

> by strangers. I think they've both been emotionally scarred and I don't

> think my advice and support helped them enough.

> >

> > My oldest daughter has a 4 year old son with blepharophimosis and a 6 year

> old son without. We had all hoped and believed he would be treated

> differently in this more " tolerant " age, but he is not.

> >

> > How can we help him to be a confident, assertive (not aggressive :-))

> child? What have you other parents done to make that happen?

> >

>

>

>

>

> ------------ --------- --------- ------

>

>

[Guest guest]

I used to get flamed here because i was so anti surgery. Im 21. And im going to

get surgery. Im just done with this.

It doesnt bother your self esteem? Let me tell you this, you would never be able

to fathom the pain.

And i agree that its better not to attribute something to bleph.

Because then you would have to open yourself to your childrens pain and it might

make you sick.

Everything i have just said sounds very harsh.

But take it from me, as someone who has fought for myself til the bitter end:

the fight never ends. As long as your children are different they will be marked

this way. Its a stigma.

You dont even want to know how men treat me.

Ive been treated as less than human. Its not that im not strong, Its that im

TIRED of fighting the fight.

Im a bitter person now. I have more confidence and awareness of myself moreson

than most people because my life has been a war. Everything from having a seat

on the bus in kindergarten. AND YES, I REMEMBER THAT DAY, NOT HAVING A SEAT TO

SIT IN BECAUSE OF MY WEIRD EYES. THE RIDICULE OF KIDS.

SO NO ITS NOT JUST WITH ALL LITTLE KIDS. I had the capacity then to understand i

was being treated differently because of my eyes. IN KINDERGARTEN.

Heres my opinion. Take it or leave it. Many of you have kids too young to

understand whats ahead of them.

My face says to people WIPE YOUR MOUTH ON ME.

i had a 4.0, went to college, great job, yadda yadda, but people treat me like

im less than, and im marked as a freak. im forever seperated from people.

Im well liked, popular, im known as like, a funny person, because i love to

laugh and cut up with people. I run the arts and crafts and photography program

at a teen center for the US Government.

But im done with this difference. ONE INCH OF SKIN ON MY EYES HAS CAUSED ME THE

PAIN OF ENDLESS LIFETIMES.

Dont feel bad for me. Dont get mad at me for saying these things. This is what

has happened to me. No matter how much great support, love, friends, confidence

you can build, PEOPLE SENSE THE DIFFERENCE IN YOU. Its an instinct, people see

it as weakness. Just like with animals, the WEAK AND MUTATED are left behind.

Im getting surgery.

Im moving on.

Some days i cant even breathe because it hurts so bad.

And honestly, im a realistic, logical well adjusted person.

Im going to erase this stigma from me. Im tired, tired so so so tired, too tired

to fight the fight. too tired to be stared at, mocked, ridiculed, treated like a

whore, treated like a deformity. its too much.

you might think im crazy but im at a turning point. and for you guys sake i hope

youre kids are as happy with BPES as you think and as they could be. Because

once they are in a relationship one day you wont be able to shield them anymore.

let me put it this way, my aunt with BPES, has two kids, one with the eyes, one

without. Which one do you think her husband, with normal eyes, favors more?

Thats a true story.

THIS ISNT A FAIRYTALE, its a effed up world, a world of hate and divorce and

cruelty and general shittyness. Im not saying have a bad outlook. But im telling

you parents. Theres only so much you can do to help your children.

They are going to have to fight their whole lives.

Im telling you from the bottom of my heart what i feel now, this group just

tries to help us feel better about being different.

but i dont want to feel better about being mutated.

i want to reconstruct my mutation so people leave me alone to a certain extent

and i can enjoy my friends, life, and relationships to the fullest.

This is a barrier to the experiences of " normal " life.

This is my experience. Take it or leave it. Dont bother flaming me, ive been

more truthful with yall then many people. You might be too horrified to believe

me, for the sake of your loved ones.

But i know there are others with BPES that feel just as estranged as i do. And

no amount of happy shiny self help self esteem mumbo jumbo will erase the fact

that WE ARE MARKED FOR LIFE (unless we decide we want to change it.)

I dont know how this thread got started. But here is my truth. You might think

your family is different, maybe it is. You may think youre kids are different,

maybe they are.

But you have read this today and now you cant ignore the FACT that building self

confidence is only a buffer to the true pain and reality of being " marked. "

Thank for listening, you have all my respect,

melissah

> > >

> > > Hello all,

> > > I am , a 62 year old mother of 2 grown daughters, now aged 40 and 34.

> > I was born with ptosis, and have no idea to this day where it may have

> > originated in our family, if it had. As far as I was concerned as I was

> > growing up, there was nobody else on the earth with ptosis. My parents,

> > bless them, were not a lot of help in giving me the tools to deal with the

> > torment other children, and yes, adults are capable of. I guess I grew up

> > fairly aggressive and confrontational at times.

> > >

> > > We have 2 daughters, both born with ptosis, both have had surgeries. I

> > feel that both of them have suffered from a great lack of self-confidence as

> > they were growing up and went through the same torments and stupid questions

> > by strangers. I think they've both been emotionally scarred and I don't

> > think my advice and support helped them enough.

> > >

> > > My oldest daughter has a 4 year old son with blepharophimosis and a 6 year

> > old son without. We had all hoped and believed he would be treated

> > differently in this more " tolerant " age, but he is not.

> > >

> > > How can we help him to be a confident, assertive (not aggressive :-))

> > child? What have you other parents done to make that happen?

> > >

> >

> >

> >

> >

> > ------------ --------- --------- ------

> >

> >

[Guest guest]

h

I have bpes and so does my daughter. I had lots of surgeries when I was a little

kid, because otherwise I would have never been able to see anything at all. Same

with my little girl. She just had a ptosis repair using fascia lata and I am

overjoyed with the results, and she is so happy to be able to see better.

It doesn't bother me the things that you said, because you were being very

honest about how you feel right now. I don't look at the pics much here but I

was curious and i looked at yours, and your pictures look good to me, honestly

my eyes are much smaller and unusual than yours and I have had surgeries, I also

have to wear glasses. I would never be outside on a sunny day without

sunglasses, either.

I think it must be hard that you have to make these decisions yourself, that

they were not made for you like in my case and my daughter's, but at the same

time, it's exciting that you can do something about bpes, where in my case, drs

do not think they could make any improvements. If you decide to have surgery, it

will be your choice and that's empowering.

Everyone is different, even those with bpes are different from each other. Like

you, when I was a little child I was very aware of it, my daughter, not so much.

I wish you all the best.

> > > >

> > > > Hello all,

> > > > I am , a 62 year old mother of 2 grown daughters, now aged 40 and

34.

> > > I was born with ptosis, and have no idea to this day where it may have

> > > originated in our family, if it had. As far as I was concerned as I was

> > > growing up, there was nobody else on the earth with ptosis. My parents,

> > > bless them, were not a lot of help in giving me the tools to deal with the

> > > torment other children, and yes, adults are capable of. I guess I grew up

> > > fairly aggressive and confrontational at times.

> > > >

> > > > We have 2 daughters, both born with ptosis, both have had surgeries. I

> > > feel that both of them have suffered from a great lack of self-confidence

as

> > > they were growing up and went through the same torments and stupid

questions

> > > by strangers. I think they've both been emotionally scarred and I don't

> > > think my advice and support helped them enough.

> > > >

> > > > My oldest daughter has a 4 year old son with blepharophimosis and a 6

year

> > > old son without. We had all hoped and believed he would be treated

> > > differently in this more " tolerant " age, but he is not.

> > > >

> > > > How can we help him to be a confident, assertive (not aggressive :-))

> > > child? What have you other parents done to make that happen?

> > > >

> > >

> > >

> > >

> > >

> > > ------------ --------- --------- ------

> > >

> > >

[Guest guest]

Hi h

Thank you for being so honest, you are obviously really angry and that is ok. I have BPES, and my daughter.

BPES has never effected me in adulthood, as I have never let it. I dont fight anymore, I smile, I have done so much work on me as a person, it has pailed into insignificance.

I am not putting down anything you said, because its how you feel, and that is ok. Elenor Roosavelt once said, "people can only make you feel inferior if you allow them to".

Please know you are a strong and beautiful, it is really important that we all know this.

I really hope you find what you need.

Love to all

Clare Teale

From: bethgordon03 <bethgordon03@...>Subject: blepharophimosis Re: How to build self confidence?blepharophimosis Date: Saturday, 5 September, 2009, 1:51 AM

hI have bpes and so does my daughter. I had lots of surgeries when I was a little kid, because otherwise I would have never been able to see anything at all. Same with my little girl. She just had a ptosis repair using fascia lata and I am overjoyed with the results, and she is so happy to be able to see better. It doesn't bother me the things that you said, because you were being very honest about how you feel right now. I don't look at the pics much here but I was curious and i looked at yours, and your pictures look good to me, honestly my eyes are much smaller and unusual than yours and I have had surgeries, I also have to wear glasses. I would never be outside on a sunny day without sunglasses, either.I think it must be hard that you have to make these decisions yourself, that they were not made for you like in my case and my daughter's, but at the same time, it's exciting that you can do something about bpes,

where in my case, drs do not think they could make any improvements. If you decide to have surgery, it will be your choice and that's empowering.Everyone is different, even those with bpes are different from each other. Like you, when I was a little child I was very aware of it, my daughter, not so much. I wish you all the best. > > > >> > > > Hello all,> > > > I am , a 62 year old mother of 2 grown daughters, now aged 40 and 34.> > > I was born with ptosis, and have no idea to this day where it may have> > > originated in our family, if it had. As far as I was concerned as I was> > > growing up, there was nobody else on the earth with ptosis. My parents,> > > bless them, were not a lot of help in giving me the tools to deal with the> > > torment other children, and yes, adults are capable of. I guess I grew up> > > fairly aggressive and confrontational at times.> > > > > > > > We have 2 daughters, both born with ptosis, both have had surgeries. I> > > feel that both of them have suffered from a great lack of self-confidence as> > > they were growing up

and went through the same torments and stupid questions> > > by strangers. I think they've both been emotionally scarred and I don't> > > think my advice and support helped them enough.> > > > > > > > My oldest daughter has a 4 year old son with blepharophimosis and a 6 year> > > old son without. We had all hoped and believed he would be treated> > > differently in this more "tolerant" age, but he is not. > > > > > > > > How can we help him to be a confident, assertive (not aggressive :-))> > > child? What have you other parents done to make that happen?> > > >> > > > > > > > > > > > > > > ------------ --------- --------- ------> > > > > >

[Guest guest]

You are a beautiful girl (quite exotic looking)! My heart goes out to you as a mother of a child with BPES(Ethan 14). We are all exposed to different circumstances in life and each one of us reacts differently to those. Bravo for you if you do choose surgery, there is nothing wrong with that choice(the results can be remarkable looking at all of the pictures in this group). I hope that you will come to a place in life that allows you to deflect some of the negativity that has been pushed on you. Each one of us has something that is different about us and everyone sees different things as beautiful. I believe everyone has a right to their own opinion but "we" don't have to see eye to eye. Don't put so much stock in what people say about you unless they are people who have earned your respect first.

Some people are cruel simply because of the cruelty in their own lives and they lash out at others.

I hope all goes well with you, never let anyone make you feel less just because of your eyes!

Best wishes,

Emalee Barrow(Ethan's mom)

USA

From: the_original_kureeji <kureeji@...>Subject: blepharophimosis Re: How to build self confidence?blepharophimosis Date: Friday, September 4, 2009, 2:21 PM

I used to get flamed here because i was so anti surgery. Im 21. And im going to get surgery. Im just done with this.It doesnt bother your self esteem? Let me tell you this, you would never be able to fathom the pain.And i agree that its better not to attribute something to bleph.Because then you would have to open yourself to your childrens pain and it might make you sick.Everything i have just said sounds very harsh.But take it from me, as someone who has fought for myself til the bitter end: the fight never ends. As long as your children are different they will be marked this way. Its a stigma. You dont even want to know how men treat me. Ive been treated as less than human. Its not that im not strong, Its that im TIRED of fighting the fight. Im a bitter person now. I have more confidence and awareness of myself moreson than most people because my life has been a war. Everything from

having a seat on the bus in kindergarten. AND YES, I REMEMBER THAT DAY, NOT HAVING A SEAT TO SIT IN BECAUSE OF MY WEIRD EYES. THE RIDICULE OF KIDS. SO NO ITS NOT JUST WITH ALL LITTLE KIDS. I had the capacity then to understand i was being treated differently because of my eyes. IN KINDERGARTEN. Heres my opinion. Take it or leave it. Many of you have kids too young to understand whats ahead of them. My face says to people WIPE YOUR MOUTH ON ME. i had a 4.0, went to college, great job, yadda yadda, but people treat me like im less than, and im marked as a freak. im forever seperated from people. Im well liked, popular, im known as like, a funny person, because i love to laugh and cut up with people. I run the arts and crafts and photography program at a teen center for the US Government.But im done with this difference. ONE INCH OF SKIN ON MY EYES HAS CAUSED ME THE PAIN OF ENDLESS LIFETIMES.Dont feel

bad for me. Dont get mad at me for saying these things. This is what has happened to me. No matter how much great support, love, friends, confidence you can build, PEOPLE SENSE THE DIFFERENCE IN YOU. Its an instinct, people see it as weakness. Just like with animals, the WEAK AND MUTATED are left behind. Im getting surgery. Im moving on.Some days i cant even breathe because it hurts so bad.And honestly, im a realistic, logical well adjusted person.Im going to erase this stigma from me. Im tired, tired so so so tired, too tired to fight the fight. too tired to be stared at, mocked, ridiculed, treated like a whore, treated like a deformity. its too much.you might think im crazy but im at a turning point. and for you guys sake i hope youre kids are as happy with BPES as you think and as they could be. Because once they are in a relationship one day you wont be able to shield them anymore.let me put it

this way, my aunt with BPES, has two kids, one with the eyes, one without. Which one do you think her husband, with normal eyes, favors more? Thats a true story. THIS ISNT A FAIRYTALE, its a effed up world, a world of hate and divorce and cruelty and general shittyness. Im not saying have a bad outlook. But im telling you parents. Theres only so much you can do to help your children.They are going to have to fight their whole lives. Im telling you from the bottom of my heart what i feel now, this group just tries to help us feel better about being different.but i dont want to feel better about being mutated. i want to reconstruct my mutation so people leave me alone to a certain extent and i can enjoy my friends, life, and relationships to the fullest.This is a barrier to the experiences of "normal" life. This is my experience. Take it or leave it. Dont bother flaming me, ive been more truthful

with yall then many people. You might be too horrified to believe me, for the sake of your loved ones.But i know there are others with BPES that feel just as estranged as i do. And no amount of happy shiny self help self esteem mumbo jumbo will erase the fact that WE ARE MARKED FOR LIFE (unless we decide we want to change it.)I dont know how this thread got started. But here is my truth. You might think your family is different, maybe it is. You may think youre kids are different, maybe they are. But you have read this today and now you cant ignore the FACT that building self confidence is only a buffer to the true pain and reality of being "marked."Thank for listening, you have all my respect,melissah> > >> > > Hello all,> > > I am , a 62 year old mother of 2 grown daughters, now aged 40 and 34.> > I was born with ptosis, and have no idea to this day where it may have> > originated in our family, if it had. As far as I was concerned as I was> > growing up, there was nobody else on the earth with ptosis. My parents,> > bless them, were not a lot of help in giving me the tools to deal with the> > torment other children, and yes, adults are capable of. I guess I grew up> > fairly aggressive and confrontational at times.> > > > > > We have 2 daughters, both born with ptosis, both have had surgeries. I> > feel that both of them have suffered from a great lack of self-confidence as> > they were growing up and went through the same

torments and stupid questions> > by strangers. I think they've both been emotionally scarred and I don't> > think my advice and support helped them enough.> > > > > > My oldest daughter has a 4 year old son with blepharophimosis and a 6 year> > old son without. We had all hoped and believed he would be treated> > differently in this more "tolerant" age, but he is not. > > > > > > How can we help him to be a confident, assertive (not aggressive :-))> > child? What have you other parents done to make that happen?> > >> > > > > > > > > > ------------ --------- --------- ------> > > >

[Guest guest]

Hiya h Darl,

You're going through a rough time. I don't blame you for being angry.

People/ children are cruel.

My parents divorced when I was 7. Mum (no BPES) and I left my home town and

moved 5 hours south. I would have been fine in my home town. All my family

members with BPES were beloved members of the community. Instead I had to learn

how to educate people who had never seen someone so 'exotic' as me.

It took no time at all to realise who my real friends would be.. (the other

people who were picked on)

As I moved schools and started fresh regularly, it was quite soul shaking to

have to go through the process of ignoring the idiots, educating those who were

willing to ask questions, and fighting to be treated equally by teachers.

I'll never forget how angry my Mum got when one school I was at decided to ban

sunglasses. Then the flack I got from the other kids when I was the only person

allowed to wear them.

It wasn't until I got to grade 11 that I found a brilliant group of friends.

They saw me for my abilities, rather than my disabilities.

It wasn't until I left school that I coined my personal catch phrase. 'I may

look different, but I see the same as you. "

I still have bad days. But on those days I decide I'm going to be grateful for

the people who love me for me. The people who can look beyond the eyes, and see

someone who is just as human as the rest of them.

You are not marked. You have been given a tool that will help you sort the men

from the boys, the genuine people from the fools.

Self confidence gives you the ability to turn the other cheek and let their

insults wash over you without a care in the world.

It gives you the strength to get up each morning and put on eyeliner to define

your beauty.

It gives you the ability to laugh loudly in a public place and know people are

taking second glances because they want to remember your unique appearance.

It is what helps you tell the nasty people to go away and leave you alone.

It is what lets you not be insulted when you're asked questions.

It is what drives you to be a better person.

I think the best thing any parent can do, is tell their children they love them.

When kids know that someone loves them the rest of the world just melts away.

*Big Hugs to all*

Be good

Belinda in Brisbane Australia

[Guest guest]

ok so Im crying now!!

Fantstically (if there is a word) said.

Clare

x

From: misssg <shewhomustbekept@...>Subject: blepharophimosis Re: How to build self confidence?blepharophimosis Date: Sunday, 6 September, 2009, 12:15 AM

Hiya h Darl,You're going through a rough time. I don't blame you for being angry. People/ children are cruel.My parents divorced when I was 7. Mum (no BPES) and I left my home town and moved 5 hours south. I would have been fine in my home town. All my family members with BPES were beloved members of the community. Instead I had to learn how to educate people who had never seen someone so 'exotic' as me. It took no time at all to realise who my real friends would be.. (the other people who were picked on)As I moved schools and started fresh regularly, it was quite soul shaking to have to go through the process of ignoring the idiots, educating those who were willing to ask questions, and fighting to be treated equally by teachers.I'll never forget how angry my Mum got when one school I was at decided to ban sunglasses. Then the flack I got from the other kids when I was the only person allowed to wear them.

It wasn't until I got to grade 11 that I found a brilliant group of friends. They saw me for my abilities, rather than my disabilities.It wasn't until I left school that I coined my personal catch phrase. 'I may look different, but I see the same as you."I still have bad days. But on those days I decide I'm going to be grateful for the people who love me for me. The people who can look beyond the eyes, and see someone who is just as human as the rest of them.You are not marked. You have been given a tool that will help you sort the men from the boys, the genuine people from the fools. Self confidence gives you the ability to turn the other cheek and let their insults wash over you without a care in the world.It gives you the strength to get up each morning and put on eyeliner to define your beauty. It gives you the ability to laugh loudly in a public place and know people are taking second glances

because they want to remember your unique appearance.It is what helps you tell the nasty people to go away and leave you alone.It is what lets you not be insulted when you're asked questions.It is what drives you to be a better person.I think the best thing any parent can do, is tell their children they love them. When kids know that someone loves them the rest of the world just melts away.*Big Hugs to all*Be goodBelinda in Brisbane Australia

[Guest guest]

HI MELISSAH,

THANK YOU FOR SHARING YOUR EXPERIENCES. IT TAKES A LOT OF COURAGE TO OPEN UP

AND I THANK YOU FROM THE BOTTOM OF MY HEART FOR YOUR WORDS OF WISDOM.

PEACE,

DEBBIE

> > > >

> > > > Hello all,

> > > > I am , a 62 year old mother of 2 grown daughters, now aged 40 and

34.

> > > I was born with ptosis, and have no idea to this day where it may have

> > > originated in our family, if it had. As far as I was concerned as I was

> > > growing up, there was nobody else on the earth with ptosis. My parents,

> > > bless them, were not a lot of help in giving me the tools to deal with the

> > > torment other children, and yes, adults are capable of. I guess I grew up

> > > fairly aggressive and confrontational at times.

> > > >

> > > > We have 2 daughters, both born with ptosis, both have had surgeries. I

> > > feel that both of them have suffered from a great lack of self-confidence

as

> > > they were growing up and went through the same torments and stupid

questions

> > > by strangers. I think they've both been emotionally scarred and I don't

> > > think my advice and support helped them enough.

> > > >

> > > > My oldest daughter has a 4 year old son with blepharophimosis and a 6

year

> > > old son without. We had all hoped and believed he would be treated

> > > differently in this more " tolerant " age, but he is not.

> > > >

> > > > How can we help him to be a confident, assertive (not aggressive :-))

> > > child? What have you other parents done to make that happen?

> > > >

> > >

> > >

> > >

> > >

> > > ------------ --------- --------- ------

> > >

> > >

[Guest guest]

Hi h,

Haven't ever seen your pictures before, but just took a look. Am I missing

something here? You look beautiful. And by that, I don't mean

look-she-has-bleph-but-isn't-she-cute-anyway. I mean you look absolutely

beautiful.

Btw, the surgery is a side issue - I am sure you'll come out great if you

ultimately decide to do it. I would have assumed you had an extra nose

after reading your last post.

In any case, take it from me (and you know I am as blunt as they come) - you

look fantastic. Surgery won't change that one iota. Walk tall.

All the best, Micah

blepharophimosis Re: How to build self confidence?

I used to get flamed here because i was so anti surgery. Im 21. And im going

to get surgery. Im just done with this.

It doesnt bother your self esteem? Let me tell you this, you would never be

able to fathom the pain.

And i agree that its better not to attribute something to bleph.

Because then you would have to open yourself to your childrens pain and it

might make you sick.

Everything i have just said sounds very harsh.

But take it from me, as someone who has fought for myself til the bitter

end: the fight never ends. As long as your children are different they will

be marked this way. Its a stigma.

You dont even want to know how men treat me.

Ive been treated as less than human. Its not that im not strong, Its that im

TIRED of fighting the fight.

Im a bitter person now. I have more confidence and awareness of myself

moreson than most people because my life has been a war. Everything from

having a seat on the bus in kindergarten. AND YES, I REMEMBER THAT DAY, NOT

HAVING A SEAT TO SIT IN BECAUSE OF MY WEIRD EYES. THE RIDICULE OF KIDS.

SO NO ITS NOT JUST WITH ALL LITTLE KIDS. I had the capacity then to

understand i was being treated differently because of my eyes. IN

KINDERGARTEN.

Heres my opinion. Take it or leave it. Many of you have kids too young to

understand whats ahead of them.

My face says to people WIPE YOUR MOUTH ON ME.

i had a 4.0, went to college, great job, yadda yadda, but people treat me

like im less than, and im marked as a freak. im forever seperated from

people.

Im well liked, popular, im known as like, a funny person, because i love to

laugh and cut up with people. I run the arts and crafts and photography

program at a teen center for the US Government.

But im done with this difference. ONE INCH OF SKIN ON MY EYES HAS CAUSED ME

THE PAIN OF ENDLESS LIFETIMES.

Dont feel bad for me. Dont get mad at me for saying these things. This is

what has happened to me. No matter how much great support, love, friends,

confidence you can build, PEOPLE SENSE THE DIFFERENCE IN YOU. Its an

instinct, people see it as weakness. Just like with animals, the WEAK AND

MUTATED are left behind.

Im getting surgery.

Im moving on.

Some days i cant even breathe because it hurts so bad.

And honestly, im a realistic, logical well adjusted person.

Im going to erase this stigma from me. Im tired, tired so so so tired, too

tired to fight the fight. too tired to be stared at, mocked, ridiculed,

treated like a whore, treated like a deformity. its too much.

you might think im crazy but im at a turning point. and for you guys sake i

hope youre kids are as happy with BPES as you think and as they could be.

Because once they are in a relationship one day you wont be able to shield

them anymore.

let me put it this way, my aunt with BPES, has two kids, one with the eyes,

one without. Which one do you think her husband, with normal eyes, favors

more? Thats a true story.

THIS ISNT A FAIRYTALE, its a effed up world, a world of hate and divorce and

cruelty and general shittyness. Im not saying have a bad outlook. But im

telling you parents. Theres only so much you can do to help your children.

They are going to have to fight their whole lives.

Im telling you from the bottom of my heart what i feel now, this group just

tries to help us feel better about being different.

but i dont want to feel better about being mutated.

i want to reconstruct my mutation so people leave me alone to a certain

extent and i can enjoy my friends, life, and relationships to the fullest.

This is a barrier to the experiences of " normal " life.

This is my experience. Take it or leave it. Dont bother flaming me, ive been

more truthful with yall then many people. You might be too horrified to

believe me, for the sake of your loved ones.

But i know there are others with BPES that feel just as estranged as i do.

And no amount of happy shiny self help self esteem mumbo jumbo will erase

the fact that WE ARE MARKED FOR LIFE (unless we decide we want to change

it.)

I dont know how this thread got started. But here is my truth. You might

think your family is different, maybe it is. You may think youre kids are

different, maybe they are.

But you have read this today and now you cant ignore the FACT that building

self confidence is only a buffer to the true pain and reality of being

" marked. "

Thank for listening, you have all my respect,

melissah

> > >

> > > Hello all,

> > > I am , a 62 year old mother of 2 grown daughters, now aged 40 and

34.

> > I was born with ptosis, and have no idea to this day where it may have

> > originated in our family, if it had. As far as I was concerned as I was

> > growing up, there was nobody else on the earth with ptosis. My parents,

> > bless them, were not a lot of help in giving me the tools to deal with

the

> > torment other children, and yes, adults are capable of. I guess I grew

up

> > fairly aggressive and confrontational at times.

> > >

> > > We have 2 daughters, both born with ptosis, both have had surgeries.

I

> > feel that both of them have suffered from a great lack of

self-confidence as

> > they were growing up and went through the same torments and stupid

questions

> > by strangers. I think they've both been emotionally scarred and I don't

> > think my advice and support helped them enough.

> > >

> > > My oldest daughter has a 4 year old son with blepharophimosis and a 6

year

> > old son without. We had all hoped and believed he would be treated

> > differently in this more " tolerant " age, but he is not.

> > >

> > > How can we help him to be a confident, assertive (not aggressive :-))

> > child? What have you other parents done to make that happen?

> > >

> >

> >

> >

> >

> > ------------ --------- --------- ------

> >

> >

[Guest guest]

Hello ,

One of lifes hardest roads is when we see our childern or grandchildren being teased or having no self esteem. My son who is now 21 has BPES and is the only one in the family, he has undergone 18 operations and we empowered him with as much information as we could ( even though that was very little until we found this site) He was happy to talk about his eyes to others. He is now a pre school teacher and even today the kids will sit on his knees and ask why he looks different and still some make jokes.

We have found that by allowing him to be able to tell the kids he grew up with what he had and why he couldn't do some things the same as them helped him to be part of the school group. Yes his self esteem was smashed at times but it is one of lifes lessons we have to accept and deal with. Love and support from his family carried him through. Empower you children to know as much about BPES as you can.

Hope this helps

Leanne

Australia

From: bbinroth <bbinroth@...>blepharophimosis Sent: Wednesday, August 26, 2009 1:19:34 AMSubject: blepharophimosis How to build self confidence?

Hello all,I am , a 62 year old mother of 2 grown daughters, now aged 40 and 34.. I was born with ptosis, and have no idea to this day where it may have originated in our family, if it had. As far as I was concerned as I was growing up, there was nobody else on the earth with ptosis. My parents, bless them, were not a lot of help in giving me the tools to deal with the torment other children, and yes, adults are capable of. I guess I grew up fairly aggressive and confrontational at times.We have 2 daughters, both born with ptosis, both have had surgeries. I feel that both of them have suffered from a great lack of self-confidence as they were growing up and went through the same torments and stupid questions by strangers. I think they've both been emotionally scarred and I don't think my advice and support helped them enough.My oldest daughter has a 4 year old son with blepharophimosis and a 6 year old son without. We had all

hoped and believed he would be treated differently in this more "tolerant" age, but he is not. How can we help him to be a confident, assertive (not aggressive :-)) child? What have you other parents done to make that happen?