Re: our choice not to have surgery

November 23, 2006

In a message dated 11/23/2006 4:32:42 AM Eastern Standard Time, patsy_kaye@... writes:

I love this web site. I am a mother and grandmother of BPES Type II children. My son and daughter both have this trait, and my daughter's two girls have this trait also. When I married their father, who passed on the trait, we decided that if our children were born with BPES we would foster self esteem rather than opt for surgery. We did not know much about it at that time and thought it was related to their ancestry, Alaskan Indian. We never thought of it as a defect. My daughter and her husband feel the same about thier girls. My daughter is 33 years old now and does not regret not having surgery. She is confident and successful as an elementary school teacher, and working on her Masters in Education. We talk openly with family, friends and others about their small eyes. We see them as beautiful and exotic looking. We all have our differences and learning to accept yourself as you are can be a very positive thing. I remember when my son was a baby and my dad was holding him in the store. Someone asked if my son was bilnd and my dad did not know how to respond. I spoke up and said (in a friendly tone with a smile on my face) "No, he isn't blind. He just has very small eyes. Isn't he unique?" I could tell my dad was very uncomfortable with the stranger making such a comment. However I was used to it and determined not to be annoyed or rude to others who had never seen anyone with BPES. I understood why they were currious and always made an attempt to be friendly and sincere. It was then that my dad asked me why I did not want to have him operated on. My loving reply was this, "Dad, you have very big ears that stick out. Why did you not have them operated on?" To me, it is the same thing. How I respond sets an example for my family, my children and others. And it carries over to my grandchildren. My daughter is outgoing and has always had many good friends. I expect it will be the same for my grandchildren. So, if anyone out there needs some loving advice, or is considering not to have surgery, I would be glad to give many other examples of how we made it through tuff times, (and we had our share of them), write back. Love and huggs to all of you who strive to be the best you can be.

fantastic reading Thank You for sharing your story. Im going to save this one. Aedan and Raina's mom

November 28, 2006

Your outlook on this is quite touching... However, I think that the world is tough enough without the "disfigurement" of BPES. I believe anything possible to correct this unfortunate malformation should be done. Yes, it might give children a tougher skin; but not worth the criticism and teasing of others. Children can be quite cruel these days and I think there are enough stresses in a child's life that as a parent you should protect them and not granting them a simple, insurance covered surgery is saddening to me. I have BPES and have went thru 5 surgeries and thank my parents for attempting to make my eyes "normal". Also, it is fact that the lifting to the lids help with vision problems as well.... So why would you not grand that to a child?? Just my opinion on the matter... If have offended anyone I apologize..patsy_kaye <patsy_kaye@...>

wrote: I love this web site. I am a mother and grandmother of BPES Type II children. My son and daughter both have this trait, and my daughter's two girls have this trait also. When I married their father, who passed on the trait, we decided that if our children were born with BPES we would foster self esteem rather than opt for surgery. We did not know much about it at that time and thought it was related to their ancestry, Alaskan Indian. We never thought of it as a defect. My daughter and her husband feel the same

about thier girls. My daughter is 33 years old now and does not regret not having surgery. She is confident and successful as an elementary school teacher, and working on her Masters in Education. We talk openly with family, friends and others about their small eyes. We see them as beautiful and exotic looking. We all have our differences and learning to accept yourself as you are can be a very positive thing. I remember when my son was a baby and my dad was holding him in the store. Someone asked if my son was bilnd and my dad did not know how to respond. I spoke up and said (in a friendly tone with a smile on my face) "No, he isn't blind. He just has very small eyes. Isn't he unique?" I could tell my dad was very uncomfortable with the stranger making such a comment. However I was used to it and determined not to be annoyed or rude to others who had never seen anyone with BPES. I understood why they were currious

and always made an attempt to be friendly and sincere. It was then that my dad asked me why I did not want to have him operated on. My loving reply was this, "Dad, you have very big ears that stick out. Why did you not have them operated on?" To me, it is the same thing. How I respond sets an example for my family, my children and others. And it carries over to my grandchildren. My daughter is outgoing and has always had many good friends. I expect it will be the same for my grandchildren. So, if anyone out there needs some loving advice, or is considering not to have surgery, I would be glad to give many other examples of how we made it through tuff times, (and we had our share of them), write back. Love and huggs to all of you who strive to be the best you can be.

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December 1, 2006

No offense taken here, but some additional food for thought. I had 2 corrective surgeries and my eyes look relatively normal. However, my worst teasing occured between the ages of 5-12 and it was AFTER my eyes were corrected with surgery. I think I would have been teased whether or not I had the surgery.

Re: blepharophimosis our choice not to have surgery

Your outlook on this is quite touching... However, I think that the world is tough enough without the "disfigurement" of BPES. I believe anything possible to correct this unfortunate malformation should be done. Yes, it might give children a tougher skin; but not worth the criticism and teasing of others. Children can be quite cruel these days and I think there are enough stresses in a child's life that as a parent you should protect them and not granting them a simple, insurance covered surgery is saddening to me. I have BPES and have went thru 5 surgeries and thank my parents for attempting to make my eyes "normal". Also, it is fact that the lifting to the lids help with vision problems as well.... So why would you not grand that to a child?? Just my opinion on the matter... If have offended anyone I apologize..patsy_kaye <patsy_kaye (DOT) com>

wrote:

I love this web site. I am a mother and grandmother of BPES Type II children. My son and daughter both have this trait, and my daughter's two girls have this trait also. When I married their father, who passed on the trait, we decided that if our children were born with BPES we would foster self esteem rather than opt for surgery. We did not know much about it at that time and thought it was related to their ancestry, Alaskan Indian. We never thought of it as a defect. My daughter and her husband feel the same about thier girls. My daughter is 33 years old now and does not regret not having surgery. She is confident and successful as an elementary school teacher, and working on her Masters in Education. We talk openly with family, friends and others about their small eyes. We see them as beautiful and exotic looking. We all have our differences and learning to accept yourself as you are can be a very positive

thing. I remember when my son was a baby and my dad was holding him in the store. Someone asked if my son was bilnd and my dad did not know how to respond. I spoke up and said (in a friendly tone with a smile on my face) "No, he isn't blind. He just has very small eyes. Isn't he unique?" I could tell my dad was very uncomfortable with the stranger making such a comment. However I was used to it and determined not to be annoyed or rude to others who had never seen anyone with BPES. I understood why they were currious and always made an attempt to be friendly and sincere. It was then that my dad asked me why I did not want to have him operated on. My loving reply was this, "Dad, you have very big ears that stick out. Why did you not have them operated on?" To me, it is the same thing. How I respond sets an example for my family, my children and others. And it carries over to my grandchildren. My daughter is outgoing

and has always had many good friends. I expect it will be the same for my grandchildren. So, if anyone out there needs some loving advice, or is considering not to have surgery, I would be glad to give many other examples of how we made it through tuff times, (and we had our share of them), write back. Love and huggs to all of you who strive to be the best you can be.

Everyone is raving about the all-new beta.

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December 2, 2006

Hello all of you lovely people, i really hope everybody is excellent!! I just wanted to add my bit...... IMy mother was told i was blind when i was born, and i was sent home..... she had no support no information, no nothing. My operation was at age 14yrs..... i had gone through terrible teasing, (before and after the ops)... my vision in both eyes is not good now. When my daughter was born we had no question of wether we should operate, it was something me and her father agreed on. Saying all of this, i do think that this decision is one that should be left to each individual family, as there are loads of different things to take into account, sight, confidence, personality of child and parents, etc etc .. and of course advice from our surgeons/professionals. I am a

personal development trainer and we teach decision making, a decision should only be made after all of the information is gathered, an informed choice can then be made, is one of the things we discuss in my training groups. I also teach confidence building, assertiveness and many other of life skills. The thing that surprises me every session is that people have their own answers every time. My daughter is 11 and a very confident happy child, i actually think she would be the same if she hadnt had her operation, but who is to tell. My two sons have more problems than her with teasing (neither of them have BPES). Although neither of them care too much. However I think whatever your situation to bring your child up with confidence empowers them to make good decisions. and put up with the rest of the world. I really hope everyone is having or has had a

great weekend. Clare Teale Herts UK Harvey <happyappykd@...> wrote: No offense taken here, but some additional food for thought. I had 2 corrective surgeries and my eyes look relatively normal. However, my worst teasing occured between

the ages of 5-12 and it was AFTER my eyes were corrected with surgery. I think I would have been teased whether or not I had the surgery. Re: blepharophimosis our choice not to have surgery Your outlook on this is quite touching... However, I think that the world is tough enough without the "disfigurement" of BPES. I believe anything possible to correct this unfortunate malformation should be done. Yes, it might give children a tougher skin; but not worth the criticism and teasing of others. Children can be quite cruel these days and I think there are enough

stresses in a child's life that as a parent you should protect them and not granting them a simple, insurance covered surgery is saddening to me. I have BPES and have went thru 5 surgeries and thank my parents for attempting to make my eyes "normal". Also, it is fact that the lifting to the lids help with vision problems as well.... So why would you not grand that to a child?? Just my opinion on the matter... If have offended anyone I apologize..patsy_kaye <patsy_kaye (DOT) com> wrote: I love this web site. I am a mother and grandmother of BPES Type II children. My son and daughter both have this trait, and my daughter's two girls have this trait also. When I married their father, who passed on the trait, we decided that if our children were born with BPES we would foster self esteem

rather than opt for surgery. We did not know much about it at that time and thought it was related to their ancestry, Alaskan Indian. We never thought of it as a defect. My daughter and her husband feel the same about thier girls. My daughter is 33 years old now and does not regret not having surgery. She is confident and successful as an elementary school teacher, and working on her Masters in Education. We talk openly with family, friends and others about their small eyes. We see them as beautiful and exotic looking. We all have our differences and learning to accept yourself as you are can be a very positive thing. I remember when my son was a baby and my dad was holding him in the store. Someone asked if my son was bilnd and my dad did not know how to respond. I spoke up and said (in a friendly tone with a smile on my face) "No, he isn't blind. He just has very small eyes. Isn't he unique?" I could tell my dad

was very uncomfortable with the stranger making such a comment. However I was used to it and determined not to be annoyed or rude to others who had never seen anyone with BPES. I understood why they were currious and always made an attempt to be friendly and sincere. It was then that my dad asked me why I did not want to have him operated on. My loving reply was this, "Dad, you have very big ears that stick out. Why did you not have them operated on?" To me, it is the same thing. How I respond sets an example for my family, my children and others. And it carries over to my grandchildren. My daughter is outgoing and has always had many good friends. I expect it will be the same for my grandchildren. So, if anyone out there needs some loving advice, or is considering not to have surgery, I would be glad to give many other examples of how we made it through tuff times, (and we had our share of them), write back. Love

and huggs to all of you who strive to be the best you can be. Everyone is raving about the all-new beta. Check out the all-new beta - Fire up a more powerful email and get things done faster.

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December 12, 2006

Anyone who has BPES and willingly chooses not to have surgery, in my

opinion, must have an extremely mild case of it. I have had surgery

and so has my dad and my daughter, still I know my visual field is so

different from others, watching my daughter, I can really see how

differently our eyes work. My neck and shoulders ache, I get

headaches sometimes, I bump my head on things above me.

I don't think choosing to not get surgery is " better " or " high-

minded " it's just a choice. I wanted my daughter to be able to see

better, to not develop neck pain from tilting her head, of course I

would like it if her eyes looked " normal " but even with lots of

surgery, that is unlikely.

Teasing in the grand scheme of things, is one small part of BPES. I

don't get teased about having BPES, but I do have to talk about it

frequently to people, and honestly, it gets old.

I love this web site.

I am a mother and grandmother of BPES Type II

> children. My son and daughter both have this trait, and my

> daughter's two girls have this trait also. When I married

> their father, who passed on the trait, we decided that if our

> children were born with BPES we would foster self esteem rather

than

> opt for surgery. We did not know much about it at

> that time and thought it was related to their ancestry, Alaskan

> Indian. We never thought of it as a defect. My daughter and her

> husband feel the same about thier girls. My daughter is 33 years

old

> now and does not regret not having surgery. She is confident and

> successful as an elementary school teacher, and working on her

> Masters in Education. We talk openly with family, friends and

others

> about their small eyes. We see them as beautiful and exotic

> looking. We all have our differences and learning to accept

> yourself as you are can be a very positive thing. I remember when

> my son was a baby and my dad was holding him in the store. Someone

> asked if my son was bilnd and my dad did not know how to respond. I

> spoke up and said (in a friendly tone with a smile on my face) " No,

> he isn't blind. He just has very small eyes. Isn't he unique? " I

> could tell my dad was very uncomfortable with the stranger making

> such a comment. However I was used to it and determined not to be

> annoyed or rude to others who had never seen anyone with BPES. I

> understood why they were currious and always made an attempt to be

> friendly and sincere. It was then that my dad asked me why I did

> not want to have him operated on. My loving reply was this, " Dad,

> you have very big ears that stick out. Why did you not have them

> operated on? " To me, it is the same thing. How I respond sets an

> example for my family, my children and others. And it carries over

> to my grandchildren.

> My daughter is outgoing and has always had many good friends. I

> expect it will be the same for my grandchildren. So, if anyone out

> there needs some loving advice, or is considering not to have

> surgery, I would be glad to give many other examples of how we made

> it through tuff times, (and we had our share of them), write back.

> Love and huggs to all of you who strive to be the best you can be.

>

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

> Everyone is raving about the all-new beta.

>

December 29, 2006

At the risk of reopening an already closed thread, I thought it important to

respond to the post below, as there are some issues in it that I think

deserve discussing;

1) I am concerned about the comment the initial poster made, in which she

decided to " foster self esteem rather than opt for surgery. " I am somewhat

confused about this purported link between self esteem and surgery for BPES.

If a child cannot properly open his or her eyes, how does not operating on

them provide for an increased sense of self worth?

2) As was mentioned by Beth Gordon, it is very important that we separate

out mild and more severe forms of BPES. For those with a pronounced droop

to their eyelids, surgery is a means to see, rather than a determinant that

potentially raises or lowers self esteem. For those of us with children who

need to have their eyelids surgically raised to see properly, BY ALL MEANS

go ahead with the surgery.

3) If I understood this first post correctly, the message delivered was

that the small eyes that come part and parcel with BPES are much like having

big ears, or another feature that, while looking a bit out of the ordinary

are still simply something that adds distinction and character to a person's

features. This is absolutely correct, but a few distinctions still need to

be drawn. Large ears do not make you trip when you walk (Dumbo and his

progeny excepted), nor do you get headaches and neckaches. The point is

this - yes, BPES gives a person features that makes them look a special way,

and that is just fine. It is not correct, however, to assume that these

features are as benign as, say, big ears or buck teeth.

4) Self esteem, frankly, will be not be determined by BPES, nor the choice

as to whether to correct it by surgery. Not even close. How our children

(and all of us, for that matter) feel about ourselves is a complicated

package, dependant on thousands of factors and cultural/social inputs. Much

as we may want to pin our source (or lack) of self esteem to some degree on

BPES, I think it is vital that we recognize that BPES is quite often not the

pivotal determinant.

My apologies if this is long winded, and a bit too direct. However, I

thought this might be worth mentioning.

Happy Holidays to All,

Micah

blepharophimosis our choice not to have surgery

I love this web site. I am a mother and grandmother of BPES Type II

children. My son and daughter both have this trait, and my

daughter's two girls have this trait also. When I married

their father, who passed on the trait, we decided that if our

children were born with BPES we would foster self esteem rather than

opt for surgery. We did not know much about it at

that time and thought it was related to their ancestry, Alaskan

Indian. We never thought of it as a defect. My daughter and her

husband feel the same about thier girls. My daughter is 33 years old

now and does not regret not having surgery. She is confident and

successful as an elementary school teacher, and working on her

Masters in Education. We talk openly with family, friends and others

about their small eyes. We see them as beautiful and exotic

looking. We all have our differences and learning to accept

yourself as you are can be a very positive thing. I remember when

my son was a baby and my dad was holding him in the store. Someone

asked if my son was bilnd and my dad did not know how to respond. I

spoke up and said (in a friendly tone with a smile on my face) " No,

he isn't blind. He just has very small eyes. Isn't he unique? " I

could tell my dad was very uncomfortable with the stranger making

such a comment. However I was used to it and determined not to be

annoyed or rude to others who had never seen anyone with BPES. I

understood why they were currious and always made an attempt to be

friendly and sincere. It was then that my dad asked me why I did

not want to have him operated on. My loving reply was this, " Dad,

you have very big ears that stick out. Why did you not have them

operated on? " To me, it is the same thing. How I respond sets an

example for my family, my children and others. And it carries over

to my grandchildren.

My daughter is outgoing and has always had many good friends. I

expect it will be the same for my grandchildren. So, if anyone out

there needs some loving advice, or is considering not to have

surgery, I would be glad to give many other examples of how we made

it through tuff times, (and we had our share of them), write back.

Love and huggs to all of you who strive to be the best you can be.

December 30, 2006

I just wanted to say, thank you for your message. I couldn't agree

with you more. Happy New Year!

>

> At the risk of reopening an already closed thread, I thought it

important to

> respond to the post below, as there are some issues in it that I

think

> deserve discussing;

>

> 1) I am concerned about the comment the initial poster made, in

which she

> decided to " foster self esteem rather than opt for surgery. " I am

somewhat

> confused about this purported link between self esteem and surgery

for BPES.

> If a child cannot properly open his or her eyes, how does not

operating on

> them provide for an increased sense of self worth?

>

> 2) As was mentioned by Beth Gordon, it is very important that we

separate

> out mild and more severe forms of BPES. For those with a

pronounced droop

> to their eyelids, surgery is a means to see, rather than a

determinant that

> potentially raises or lowers self esteem. For those of us with

children who

> need to have their eyelids surgically raised to see properly, BY

ALL MEANS

> go ahead with the surgery.

>

> 3) If I understood this first post correctly, the message

delivered was

> that the small eyes that come part and parcel with BPES are much

like having

> big ears, or another feature that, while looking a bit out of the

ordinary

> are still simply something that adds distinction and character to a

person's

> features. This is absolutely correct, but a few distinctions still

need to

> be drawn. Large ears do not make you trip when you walk (Dumbo and

his

> progeny excepted), nor do you get headaches and neckaches. The

point is

> this - yes, BPES gives a person features that makes them look a

special way,

> and that is just fine. It is not correct, however, to assume that

these

> features are as benign as, say, big ears or buck teeth.

>

> 4) Self esteem, frankly, will be not be determined by BPES, nor

the choice

> as to whether to correct it by surgery. Not even close. How our

children

> (and all of us, for that matter) feel about ourselves is a

complicated

> package, dependant on thousands of factors and cultural/social

inputs. Much

> as we may want to pin our source (or lack) of self esteem to some

degree on

> BPES, I think it is vital that we recognize that BPES is quite

often not the

> pivotal determinant.

>

> My apologies if this is long winded, and a bit too direct. However,

I

> thought this might be worth mentioning.

>

> Happy Holidays to All,

>

> Micah

>

> blepharophimosis our choice not to have surgery

>

> I love this web site. I am a mother and grandmother of BPES Type

II