Re: Surgery? Its sickening

[Guest guest]

Im sorry if i have offended you with my personal opinions.

Not everything in life should be dictated by a medical encyclopedia,

donna.

I choose not to use language with negative connotations to describe

my family.

Though it is a congenital defect, my family would never use the

word " defect " to refer to each other, or describe our condition.

I would never go to my grandmother and tell her that her eyes are a

defect.

I am glad that your daughter is confident and happy, and that the use

of the word doesn't upset her.

Once again, im sorry that i have offended you by describing my

opinions and telling my story.

h

> > Im struggling right now to write this

> post with some sort of tact. I

> > thought this was a support group for people

> with " blepharophimosis "

> > but to me it seems like surgery is what is being supported....

> >

> > I would never dream of having surgery. What would i tell my

child,

> > when it was born, with eyes like me? How could i justify it,

and

> tell

> > him or her that she is beautiful, except one thing, which

surgery

> > could " fix " ? How could i make him face the world alone, if i

had

> went

> > through surgery to get 'normal' eyes? The child would come out

> with a

> > perception innately that something was wrong with him. Why else

> would

> > mom have changed herself, if there wasnt a problem?

> >

> > I hear of kids going through 3 or 4 surgeries. I dont know if

non

> > affected parents have a complete understanding of just

> > how...disturbing this is.

> >

> > In my family, people have had eyes like mine since before my

great

> > grandmother. I cant imagine what it would be like for two

parents

> > without the eyes to have a kid with the eyes. They must feel

> > estranged, upset, scared, i dont know.

> >

> > But out of the bottom of my heart i would urge every single

parent

> > who ever has a child with the eyes to think about what they are

> > doing.

> >

> > I grew up with family, constantly telling me i was beautiful,

that

> > there was nothing wrong with me and i had as much right to be

on

> the

> > earth as anyone else. I dont know what it would be like to be

> alone,

> > never seeing a family member with eyes like yours, and then to

> have

> > your parents show you in the direction of surgery.

> >

> > My eyes dont give me a huge vision problem, i dont even have

ANY

> > vision problems. So for an unaffected parent to give their

child

> > surgery at the age of 3 or 5 or something just really really

> upsets

> > me. I was taught love and acceptance of peoples differences.

> >

> > I have been mocked, ridiculed and degraded my entire life by

> people

> > who dont understand because of my eyes. But at the same time, i

> would

> > never get surgery to fix my outside appearance. It wont change

my

> > genes.

> >

> > Fuck being normal. Seriously. The people who hold my company

love

> and

> > accept me for who I am. Ive waded through the callous assholes,

> and

> > the friends i have now are true friends. A little bit of extra

> skin

> > around my eyes doesnt change the way they feel about me.

Sometimes

> i

> > thank god i was born this way. Now i know people love me for me

> > instead of strictly my appearance.

> >

> > This post is huge and rather unorganized...but we aren't

diseased,

> > people. We have extra skin on our eyelids, and some of us have

> vision

> > restrictions. We have all of our limbs. We can talk, be

> articulate,

> > create things...Any time i feel bad about my eyes i just think

> about

> > people confined to wheel chairs, people who cant take care of

> > themselves or who have mental disabilities.

> >

> > Do people put their children through surgery saying they want

to

> make

> > their children feel better about themselves???

> >

> > I didnt even know my eyes were any different than anyone elses

> till i

> > was about 5, and even then it was a tentative understanding

that i

> > was different.

> >

> > I think maybe its the parents who feel uncomfortable. Maybe

they

> want

> > to make themselves feel better about the way their child looks,

> and

> > not vice versa.

> >

> > Im not trying to attack anyone personally, and if you want to

call

> me

> > an asshole, or hate my words, please feel free. But i will tell

> you

> > that i live this everyday.

> >

> > My cousin went to go have corrective surgery on her eyes. The

only

> > one in our entire family out of three generations. The doctors

> messed

> > up the operation and now she has limited function of one eye.

You

> > tell me what is better.

> >

> > Im really upset about this 'support' group. Im upset that i

even

> > found it. I thought i would be able to share experiences with

> people

> > like me. I didnt know that i would find people like me, going

> through

> > surgery, so they wouldnt be like me.

> >

> >

> >

> >

> >

> >

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

> > Be a better sports nut! Let your teams follow you with

> Mobile. Try it now.

> >

> >

> >

> >

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

> > Never miss a thing. Make your homepage.

> >

>

>

>

>

>

>

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

> Get easy, one-click access to your favorites. Make your

homepage.

>

[Guest guest]

Wow! Take a chill pill!

> > > Im struggling right now to write

this

> > post with some sort of tact. I

> > > thought this was a support group for people

> > with " blepharophimosis "

> > > but to me it seems like surgery is what is being

supported....

> > >

> > > I would never dream of having surgery. What would i tell my

> child,

> > > when it was born, with eyes like me? How could i justify it,

> and

> > tell

> > > him or her that she is beautiful, except one thing, which

> surgery

> > > could " fix " ? How could i make him face the world alone, if i

> had

> > went

> > > through surgery to get 'normal' eyes? The child would come

out

> > with a

> > > perception innately that something was wrong with him. Why

else

> > would

> > > mom have changed herself, if there wasnt a problem?

> > >

> > > I hear of kids going through 3 or 4 surgeries. I dont know

if

> non

> > > affected parents have a complete understanding of just

> > > how...disturbing this is.

> > >

> > > In my family, people have had eyes like mine since before my

> great

> > > grandmother. I cant imagine what it would be like for two

> parents

> > > without the eyes to have a kid with the eyes. They must feel

> > > estranged, upset, scared, i dont know.

> > >

> > > But out of the bottom of my heart i would urge every single

> parent

> > > who ever has a child with the eyes to think about what they

are

> > > doing.

> > >

> > > I grew up with family, constantly telling me i was

beautiful,

> that

> > > there was nothing wrong with me and i had as much right to

be

> on

> > the

> > > earth as anyone else. I dont know what it would be like to

be

> > alone,

> > > never seeing a family member with eyes like yours, and then

to

> > have

> > > your parents show you in the direction of surgery.

> > >

> > > My eyes dont give me a huge vision problem, i dont even have

> ANY

> > > vision problems. So for an unaffected parent to give their

> child

> > > surgery at the age of 3 or 5 or something just really really

> > upsets

> > > me. I was taught love and acceptance of peoples differences.

> > >

> > > I have been mocked, ridiculed and degraded my entire life

by

> > people

> > > who dont understand because of my eyes. But at the same

time, i

> > would

> > > never get surgery to fix my outside appearance. It wont

change

> my

> > > genes.

> > >

> > > Fuck being normal. Seriously. The people who hold my company

> love

> > and

> > > accept me for who I am. Ive waded through the callous

assholes,

> > and

> > > the friends i have now are true friends. A little bit of

extra

> > skin

> > > around my eyes doesnt change the way they feel about me.

> Sometimes

> > i

> > > thank god i was born this way. Now i know people love me for

me

> > > instead of strictly my appearance.

> > >

> > > This post is huge and rather unorganized...but we aren't

> diseased,

> > > people. We have extra skin on our eyelids, and some of us

have

> > vision

> > > restrictions. We have all of our limbs. We can talk, be

> > articulate,

> > > create things...Any time i feel bad about my eyes i just

think

> > about

> > > people confined to wheel chairs, people who cant take care

of

> > > themselves or who have mental disabilities.

> > >

> > > Do people put their children through surgery saying they

want

> to

> > make

> > > their children feel better about themselves???

> > >

> > > I didnt even know my eyes were any different than anyone

elses

> > till i

> > > was about 5, and even then it was a tentative understanding

> that i

> > > was different.

> > >

> > > I think maybe its the parents who feel uncomfortable. Maybe

> they

> > want

> > > to make themselves feel better about the way their child

looks,

> > and

> > > not vice versa.

> > >

> > > Im not trying to attack anyone personally, and if you want

to

> call

> > me

> > > an asshole, or hate my words, please feel free. But i will

tell

> > you

> > > that i live this everyday.

> > >

> > > My cousin went to go have corrective surgery on her eyes.

The

> only

> > > one in our entire family out of three generations. The

doctors

> > messed

> > > up the operation and now she has limited function of one

eye.

> You

> > > tell me what is better.

> > >

> > > Im really upset about this 'support' group. Im upset that i

> even

> > > found it. I thought i would be able to share experiences

with

> > people

> > > like me. I didnt know that i would find people like me,

going

> > through

> > > surgery, so they wouldnt be like me.

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Be a better sports nut! Let your teams follow you with

> > Mobile. Try it now.

> > >

> > >

> > >

> > >

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

> > > Never miss a thing. Make your homepage.

> > >

> >

> >

> >

> >

> >

> >

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

> > Get easy, one-click access to your favorites. Make your

> homepage.

> >

>

[Guest guest]

Hi All,

I would just like to add a perspective. I was a Mom at the age of 20

and had this baby girl who had eyes that were different, she is

extremely beautiful I must say. We went to see a cosmetic surgeon in

Boston and he said my daughter needed to have surgery. I was young

didn't understand what was wrong with her and thought that the doctor

knew best. So, I agreed with the surgery. I don't know what she

would be like if she didn't have the surgery but I do know that she

has worn glasses since she was 3 years old and that she doesn't have

20/20 vision with them on. Should I have waited, I don't know. But,

I feel that I made the right decision for her.

--- In blepharophimosis , Colson <kureeji@...>

wrote:

>

>

> I understand where you are coming from whole heartedly. I was

referring to surgery strictly for cosmetic purposes, when the child

is too young to be aware of whats happening to them.

>

> I saw a post in another group where a mother who was unaffected had

a child with it. She asked what development problems were associated

with the condition.

>

> It really shook me to the core and scared me, about how uneducated

people are. And the possibility of people like that who are ill

informed, putting their children through surgery, really really

scared me.

>

> My youngest cousin may have to go through surgery, her eyes are

smaller than mine and she has to tilt her head. Im not judging

anyone who goes through surgery to improve their vision. At the same

time, i wonder what unaffected parents see as a vision problem? I had

to tilt my head when i was younger. People still come up to me and

ask me " Can you see? "

>

> I have the same range of vision as anyone else. Most of my family

does, except my youngest cousin, being the only one who may *need*

> surgery.

>

> The only way a parent will know if their child is having a vision

problem is to give it some time. All children with it will tilt their

head. They are short, and paired with the eyes, you get the tilt. But

my mother says that as i grew taller the habit was completely

eliminated.

>

> I can understand how that would scare parents, seeing their

children tilt their head like that. What else can be assumed, but

that there is a vision problem?

>

>

> My point is the only way a parent will know what the world looks

like through their childrens eyes is to WAIT TILL THEY CAN TELL YOU.

I understand that epiblepharon agitated the situation and i

understand that you wanted the best for her. I understand.

>

> But as a person who has blepharophimosis with no other conditions,

im very lucky that my mother didnt take me to have surgery when i was

young. Even though i tilted my head, and my eyes may seem like i have

a vision problem, i dont. And you know what? Until this group, not

one doctor has ever given me any information about this. Doctors dont

always have the answers, they are just people like me and you.

>

> Psychologically and socially, i have no idea how different my life

would be if i had been operated on at a young age.

>

> Thats where im coming from, and i didnt mean to upset anyone...it

has enriched my life to read everyones stories.

>

> I put a picture of me in the gallery if anyone wants to know what

my eyes look like. I can put up ones of me as a child as well.

>

>

>

> blepharophimosis@...: donnat65@...: Mon, 19 Nov 2007 00:38:09

+0000Subject: blepharophimosis Re: Surgery? Its sickening

>

>

>

>

> I can assure you that I did not subject my 22-month-old daughter to

surgery just because I am vain. In fact, I consulted 2 pediatric

ophthalmologists before I decided to go through with it. If your

vision isn't affected by your condition, you are very lucky. My

daughter, on the other hand, was barely able to see at all. She had

to tilt her head so far back in order to see that the doctors worried

that she would have life-long problems with her neck if we waited any

longer. Plus, she had congenital epiblepharon (her bottom lashes

rolled in and rubbed against her eyes). The constant rubbing was

starting to cause scaring on her eyes. Because the surgery was

preformed by an ophthalmic plastic surgeon my insurance company

wouldn't agree to pay for it unless it was determined to

be " medically necessary " . It was. Personally, I loved my

daughter's " little eyes " . See, she was adopted at 19 months old, and

I feel in love with the pictures of those little eyes even before I

met the child. I actually made it a point to take her in and have

professional portraits done before the surgery so that we would

always be able to see the beautiful face she was born with. If the

surgery was purely cosmetic, it would never have happened. My

daughter had surgery to save her sight, not because I was embarrassed

or uncomfortable with her looks. She was, is, and always will be

absolutely beautiful.And surgery or not, my daughter still has

blepharophimosis. Surgery can help her vision, but it is never going

to change her chromosomes. Donna

>

>

>

>

>

>

> _________________________________________________________________

> Connect and share in new ways with Windows Live.

> http://www.windowslive.com/connect.html?

ocid=TXT_TAGLM_Wave2_newways_112007

>

[Guest guest]

WOWEE i am quite suprised, i have been gone for 5 days and this is quite a

conversation i

came back too!!

here are 2 poems for you guys....

There's A Reason

I was always taught, there's a reason

That people do the things they do,

Though you may not always like them.

Their heart hides a secret from you.

If they're quick to get angry

Or constantly brag and boast,

Remember, the people we like the least

May need our love the most.

Could it be they had been unhappy

Or even ridiculed all their lives?

These are the type of hurtful things

That make sure their heart survives.

But, the heart that survives is hardened

And, on the seas of life, they coast.

Remember, the people we like the least

May need our love the most.

Different

by Vincen Tabatha

How are we so " different " ?

If " different " is just a thing.

If we all have certain features,

What does " different " bring?

People filled with hatred,

Can't possibly see,

That there's not really " differences "

Between you and me.

Looks can't show " difference " ,

If they're just there to be seen.

If you don't look like someone else,

Why are they so mean?

If being " different " is what is wrong,

I'd rather not be right.

And I'd want to finish living,

Doing the " different " fight.

this is a poem my son read to his school (not related to BPES) but i thought it

applied.

Tonikka and Lynden

Edmonton CANADA

Lynden has had 4 with an upcoming surgery!

-- In blepharophimosis , " chrissyj30 " <c.jameson@...> wrote:

>

> Hi All,

>

> I would just like to add a perspective. I was a Mom at the age of 20

> and had this baby girl who had eyes that were different, she is

> extremely beautiful I must say. We went to see a cosmetic surgeon in

> Boston and he said my daughter needed to have surgery. I was young

> didn't understand what was wrong with her and thought that the doctor

> knew best. So, I agreed with the surgery. I don't know what she

> would be like if she didn't have the surgery but I do know that she

> has worn glasses since she was 3 years old and that she doesn't have

> 20/20 vision with them on. Should I have waited, I don't know. But,

> I feel that I made the right decision for her.

>

>

>

>

>

> >

> >

> > I understand where you are coming from whole heartedly. I was

> referring to surgery strictly for cosmetic purposes, when the child

> is too young to be aware of whats happening to them.

> >

> > I saw a post in another group where a mother who was unaffected had

> a child with it. She asked what development problems were associated

> with the condition.

> >

> > It really shook me to the core and scared me, about how uneducated

> people are. And the possibility of people like that who are ill

> informed, putting their children through surgery, really really

> scared me.

> >

> > My youngest cousin may have to go through surgery, her eyes are

> smaller than mine and she has to tilt her head. Im not judging

> anyone who goes through surgery to improve their vision. At the same

> time, i wonder what unaffected parents see as a vision problem? I had

> to tilt my head when i was younger. People still come up to me and

> ask me " Can you see? "

> >

> > I have the same range of vision as anyone else. Most of my family

> does, except my youngest cousin, being the only one who may *need*

> > surgery.

> >

> > The only way a parent will know if their child is having a vision

> problem is to give it some time. All children with it will tilt their

> head. They are short, and paired with the eyes, you get the tilt. But

> my mother says that as i grew taller the habit was completely

> eliminated.

> >

> > I can understand how that would scare parents, seeing their

> children tilt their head like that. What else can be assumed, but

> that there is a vision problem?

> >

> >

> > My point is the only way a parent will know what the world looks

> like through their childrens eyes is to WAIT TILL THEY CAN TELL YOU.

> I understand that epiblepharon agitated the situation and i

> understand that you wanted the best for her. I understand.

> >

> > But as a person who has blepharophimosis with no other conditions,

> im very lucky that my mother didnt take me to have surgery when i was

> young. Even though i tilted my head, and my eyes may seem like i have

> a vision problem, i dont. And you know what? Until this group, not

> one doctor has ever given me any information about this. Doctors dont

> always have the answers, they are just people like me and you.

> >

> > Psychologically and socially, i have no idea how different my life

> would be if i had been operated on at a young age.

> >

> > Thats where im coming from, and i didnt mean to upset anyone...it

> has enriched my life to read everyones stories.

> >

> > I put a picture of me in the gallery if anyone wants to know what

> my eyes look like. I can put up ones of me as a child as well.

> >

> >

> >

> > blepharophimosis@: donnat65@: Mon, 19 Nov 2007 00:38:09

> +0000Subject: blepharophimosis Re: Surgery? Its sickening

> >

> >

> >

> >

> > I can assure you that I did not subject my 22-month-old daughter to

> surgery just because I am vain. In fact, I consulted 2 pediatric

> ophthalmologists before I decided to go through with it. If your

> vision isn't affected by your condition, you are very lucky. My

> daughter, on the other hand, was barely able to see at all. She had

> to tilt her head so far back in order to see that the doctors worried

> that she would have life-long problems with her neck if we waited any

> longer. Plus, she had congenital epiblepharon (her bottom lashes

> rolled in and rubbed against her eyes). The constant rubbing was

> starting to cause scaring on her eyes. Because the surgery was

> preformed by an ophthalmic plastic surgeon my insurance company

> wouldn't agree to pay for it unless it was determined to

> be " medically necessary " . It was. Personally, I loved my

> daughter's " little eyes " . See, she was adopted at 19 months old, and

> I feel in love with the pictures of those little eyes even before I

> met the child. I actually made it a point to take her in and have

> professional portraits done before the surgery so that we would

> always be able to see the beautiful face she was born with. If the

> surgery was purely cosmetic, it would never have happened. My

> daughter had surgery to save her sight, not because I was embarrassed

> or uncomfortable with her looks. She was, is, and always will be

> absolutely beautiful.And surgery or not, my daughter still has

> blepharophimosis. Surgery can help her vision, but it is never going

> to change her chromosomes. Donna

> >

> >

> >

> >

> >

> >

> > _________________________________________________________________

> > Connect and share in new ways with Windows Live.

> > http://www.windowslive.com/connect.html?

> ocid=TXT_TAGLM_Wave2_newways_112007

> >

>