Re: SOOOO relieved to find you guys!!

[Guest guest]

Dear Donna

Now you've got me crying buckets too. (again). Welcome to this wonderful

strange(cyberspace) group. You and Hale are definatly not alone. I'm so glad

you finally got an answer about why Hale looks different. Remember that

experience in the future dealing with doctor's who , like all of us, do not have

all

the answers. I think the guilt feelings are very normal. I went through

them myself. Oh hi my name is I am the mom of two wonderful children 6

and 2. Aedan the 2 year old has Bleph. We live in NYC . The stares and

comments of others have been very tough for me to deal with. I am getting

better.

Finally. Give yourself some time. I think that very honest E-mail is the

beginning. Reading E-mails from this group is so helpful for me. I especially

get strength reading from those who have Bleph. themselves. Understanding how

bright, understanding, and wonderful you guys have turned out helps me have

faith that Aedan is going to be ok. As soon as he can read I'll have him

hooked up to this group too. I hopefully will have met some other families

face

to face before then. What about getting gatherings going around the States?

Anyway Donna, WELCOME, WELCOME,WELCOME.

[Guest guest]

Hi Donna ~ Welcome to this group! I think I kind of a have clue what you are experiencing in relief to find this group! My sister (21) found this site at the beginning of this year! It was just when we have given up all hopes of getting pregnant and had just turned in our application for adoption! I was sooooooooooooo relieved to finally realize maybe this was why we had no confirmed diagnosis for our fertility problems. Not that I would wish this on anyone, it was just helpful to know we were not alone.

I can not help you with all of your posts ... we have a new baby boy we adopted who doesn't have BPES, but I can share your other feelings ... especially about the relative who is young and has happy healthy baby that she did not need at that time in her life.

I admire your courage to keep hunting and finding out for yourself how to help your daughter! I am sure she is just beautiful! I know you will learn alot from this group! They may be able to help you find some specialists in your region! Good Luck to you! Lynette in SC

blepharophimosis SOOOO relieved to find you guys!!

Hi all ~I am sitting here crying buckets and for the first time am NOT feeling alone in all of this!My name is Donna and I have a 7 month old daughter (Halle ) who has BPES. We were just informed yesterday and up until then had no idea that it was even a condition that existed. Neither my husband or I have BPES nor does anyone else I know of. Because we live on a small Island in Eastern Canada, we do not have many specialists here. When Halle was born, I knew there was something different about her eyes as she hardly opened them the first two days of her life. But my family doc assured me they were fine and just small. When she was 4wks old, I took her to see a pediatrician. He did not know of BPES but was concerned it was some type of syndrome so sent her for all types of tests including chest x-ray, ultrasound, blood work, etc. It all came back normal. He also sent her for an eye exam (eye doc did not mention BPES) and a hearing test. Again, all normal. He sent in a request to see a geneticist but because of our location, would not see her until 6 mos later. So yesterday, we were finally told that our daughter has BPES. Because I had know idea it existed, I guess I was shocked. All along, I just wanted someone to say that she had small eyes but that was all. Now I hearing/reading things about infertility! That breaks my heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but suffered 3 miscarriages before Halle was born. I know the pain and heartache involved and I wouldn't wish it on Halle for the world. I was just about to sign off the computer when I came across this group. When I started looking at some photos, I started crying because for once, Halle is not the only one who looks like she does. I've been obsessed with looking at babies eyes trying to find someone else who looks like she does. There's something else I need to get out....I am feeling soooooo much guilt. I know that I either subconsiously or knowingly keep my daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I hate myself for it. I love it when we are at home alone or with close family. But when I have to go out somewhere - shopping, etc., I hate for people to look at her because of their response. They see the car seat in the shopping cart and lean down to say "oooohhhh" and then the look on their face when they realize she's different. They stumble over their words and say something like "what a cute outfit" or "how old is she?" My 19yo neice had a daughter 4wks before Halle. The baby was not wanted or planned but is perfect. I look at her and I think how unfair it is that the baby I tried so long to have is not perfect. I HATE myself for that - what kind of mother thinks that about her child. I love her with all my being but what is wrong with me?? Am I ashamed of her????Please help me, girls!!!! How can I make myself change??? She is such an adorable baby - she deserves better.Thank you all so much for letting me get this out - I feel like a weight has been lifted. I hope to get to know you all better.LoveDonna

[Guest guest]

Hi Donna,

My name is and I too live in Canada, but I live in Ontario, if I can be of any help to you regarding doctors, etc. please feel free to contact me directly.

I have BPES and so does my 15 year old son.

I could relate on so many levels to your email. I had my son naturally but have not been able to have any more children after him. While we were going through invitro fertilization (we did not know at the time that our infertility may be caused by the BPES) my sister-in-law got pregnant and had the nerve to phone and complain about it being an unwanted pregnancy. She ended up having a beautiful, perfectly healthy baby boy. But how uncaring was that...I remember crying for days.

And I can understand your guilt about your own baby and not wanting strangers staring at her. When my son was born, I had a c-section and never got to see him for the first 24 hours and the doctors and my husband told me that he was "normal". But as soon as I saw him I knew he had BPES. I cried for days once again. Then I felt guilty because I didn't know the real reason behind my tears. Were the tears for my son, and the thoughts of him having to grow up with this syndrome or were the tears for myself for having not had a "perfect" baby?? The guilt made me cry even more. But either way we got through it and my son was a beautiful, very happy, healthy baby and has grown up to be a well adjusted teenager, with lots of friends, hobbies, etc. I consider myself blessed to have him. Believe me after going through Invitro, etc. and having met so many couples who cannot have any children, we are very lucky.

As for the strangers, I have found that staring back does wonders although it is hard at times, just keeping a sense of humour gets you through it.

Welcome to the group and best of luck.

newhavenmama <newhavenmama@...> wrote:

Hi all ~I am sitting here crying buckets and for the first time am NOT feeling alone in all of this!My name is Donna and I have a 7 month old daughter (Halle ) who has BPES. We were just informed yesterday and up until then had no idea that it was even a condition that existed. Neither my husband or I have BPES nor does anyone else I know of. Because we live on a small Island in Eastern Canada, we do not have many specialists here. When Halle was born, I knew there was something different about her eyes as she hardly opened them the first two days of her life. But my family doc assured me they were fine and just small. When she was 4wks old, I took her to see a pediatrician. He did not know of BPES but was concerned it was some type of syndrome so sent her for all types of tests including chest x-ray,

ultrasound, blood work, etc. It all came back normal. He also sent her for an eye exam (eye doc did not mention BPES) and a hearing test. Again, all normal. He sent in a request to see a geneticist but because of our location, would not see her until 6 mos later. So yesterday, we were finally told that our daughter has BPES. Because I had know idea it existed, I guess I was shocked. All along, I just wanted someone to say that she had small eyes but that was all. Now I hearing/reading things about infertility! That breaks my heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but suffered 3 miscarriages before Halle was born. I know the pain and heartache involved and I wouldn't wish it on Halle for the world. I was just about to sign off the computer when I came across this group. When I started looking at some photos, I started crying because for once, Halle is not the only one who looks like she

does. I've been obsessed with looking at babies eyes trying to find someone else who looks like she does. There's something else I need to get out....I am feeling soooooo much guilt. I know that I either subconsiously or knowingly keep my daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I hate myself for it. I love it when we are at home alone or with close family. But when I have to go out somewhere - shopping, etc., I hate for people to look at her because of their response. They see the car seat in the shopping cart and lean down to say "oooohhhh" and then the look on their face when they realize she's different. They stumble over their words and say something like "what a cute outfit" or "how old is she?" My 19yo neice had a daughter 4wks before Halle. The baby was not wanted or planned but is perfect. I look at her and I think how unfair it is that the baby I tried so long to have is not

perfect. I HATE myself for that - what kind of mother thinks that about her child. I love her with all my being but what is wrong with me?? Am I ashamed of her????Please help me, girls!!!! How can I make myself change??? She is such an adorable baby - she deserves better.Thank you all so much for letting me get this out - I feel like a weight has been lifted. I hope to get to know you all better.LoveDonna

[Guest guest]

Just like a previous poster, I am crying, too. You and your little girl will be okay. I have BPES, and so does my 3 month old daughter, Lily. So does my dad and my grandfather.

First, I want to thank Angie for posting the pictures of her beautiful baby girl and her husband (who is cute, too!) and for expressing her love and enthusiasm for her family. My husband, friends and family all say the same thing about me, that I have always been beautiful and so is Lily. And I have to say that I never felt unattractive, but I felt different and I knew that some people would have a problem with it. I accept myself, I didn't want this to happen to Lily but I am getting more an more used to the idea.

You are so brave to admit how you are feeling. I understand, because I am always worried about when someone will say something to us about our baby. Lily has stitches from two surgeries, so we have had to explain to many people, but somehow that's made it easier than people making rude comments or staring. It's probably hard because you are in a small town and probably everyone looks the same. Sometimes what hurts me the most is that other people seem so smug that their kids are "fine". Or the things that I know they say, "thank goodness our kids are healthy". It does hurt,and it can make you want to isolate yourself, but you won't do it for long, because your baby deserves better, and because you don't want her to live like that. I remember my mom and how she always was cheerful and loving and she protected me but she didn't hold me back. You just found out so give yourself time. I have had this my whole life, and I knew my baby could have it, too. And I still need time to get

used to it.

When I think that Lily could be infertile, my heart just breaks. But I am not going to get genetic testing, because it will hurt too much if someone tells me definitively that she can't have children. It's something we will talk about when she gets older and can make choices whether or not to be tested. My doctor just told us to take one thing at a time and I think that's best. Lots of people have difficulty becoming parents and there are mmore and more ways that they can get help.

It took us a while to find a good surgeon. The first one just said this is "hard", wasn't very encouraging or caring. Our new doctor said, what a beautiful baby, she has a little bleph, we will take good care of her, and she will be fine. He said don't feel guilty for giving this to her, and don't deny yourself another baby if you want one." That meant so much to me. My parents looked a long time for a doctor for me (in 1970) and wouldn't settle until they found someone who was loving, skilled and confident about helping me. My mom insisted I do that for Lily and it was good advice.

Everything you are feeling many, if not all of the moms have felt at some point

warm regards

Beth

newhavenmama <newhavenmama@...> wrote:

Hi all ~I am sitting here crying buckets and for the first time am NOT feeling alone in all of this!My name is Donna and I have a 7 month old daughter (Halle ) who has BPES. We were just informed yesterday and up until then had no idea that it was even a condition that existed. Neither my husband or I have BPES nor does anyone else I know of. Because we live on a small Island in Eastern Canada, we do not have many specialists here. When Halle was born, I knew there was something different about her eyes as she hardly opened them the first two days of her life. But my family doc assured me they were fine and just small. When she was 4wks old, I took her to see a pediatrician. He did not know of BPES but was concerned it was some type of syndrome so sent her for all types of tests including chest x-ray,

ultrasound, blood work, etc. It all came back normal. He also sent her for an eye exam (eye doc did not mention BPES) and a hearing test. Again, all normal. He sent in a request to see a geneticist but because of our location, would not see her until 6 mos later. So yesterday, we were finally told that our daughter has BPES. Because I had know idea it existed, I guess I was shocked. All along, I just wanted someone to say that she had small eyes but that was all. Now I hearing/reading things about infertility! That breaks my heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but suffered 3 miscarriages before Halle was born. I know the pain and heartache involved and I wouldn't wish it on Halle for the world. I was just about to sign off the computer when I came across this group. When I started looking at some photos, I started crying because for once, Halle is not the only one who looks like she

does. I've been obsessed with looking at babies eyes trying to find someone else who looks like she does. There's something else I need to get out....I am feeling soooooo much guilt. I know that I either subconsiously or knowingly keep my daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I hate myself for it. I love it when we are at home alone or with close family. But when I have to go out somewhere - shopping, etc., I hate for people to look at her because of their response. They see the car seat in the shopping cart and lean down to say "oooohhhh" and then the look on their face when they realize she's different. They stumble over their words and say something like "what a cute outfit" or "how old is she?" My 19yo neice had a daughter 4wks before Halle. The baby was not wanted or planned but is perfect. I look at her and I think how unfair it is that the baby I tried so long to have is not

perfect. I HATE myself for that - what kind of mother thinks that about her child. I love her with all my being but what is wrong with me?? Am I ashamed of her????Please help me, girls!!!! How can I make myself change??? She is such an adorable baby - she deserves better.Thank you all so much for letting me get this out - I feel like a weight has been lifted. I hope to get to know you all better.LoveDonna

[Guest guest]

Donna,

Never be ashamed to show off any result of love! I have BPES and am not able to have children and it breaks my heart to see young ones having children they do not want or cannot care for or those who have children and abuse them so. I cried for days when I found out that I could not have children. My ex husband became quite cruel after a year or so of marriage and said that I was a hidious monster and told me i should not go out in public. After those cold cruel words I didnt leave the house for almost a year and was in a deep depression. I woke up got smart and decided that no matter what I looked like I was a caring loving person that surely could find someone to love me as much as I loved them, and I did. My husband Mats says I am beautiful both inside and out and often tells me that he cannot see what anyone else sees as a defect. I wish you the best of luck. Belive me some people can be quite cruel but remember that love builds a wonderful person that can handle anything. Feel free to email me directly or message me if you just want a cybershoulder to cry on.

Best Reguards

Ami & Mats Helge

From: "newhavenmama" <newhavenmama@...> Reply-blepharophimosis blepharophimosis Subject: blepharophimosis SOOOO relieved to find you guys!! Date: Tue, 09 Nov 2004 17:41:38 -0000 Hi all ~ I am sitting here crying buckets and for the first time am NOT feeling alone in all of this! My name is Donna and I have a 7 month old daughter (Halle ) who has BPES. We were just informed yesterday and up until then had no idea that it was even a condition that existed. Neither my husband or I have BPES nor does anyone else I know of. Because we live on a small Island in Eastern Canada, we do not have many specialists here. When Halle was born, I knew there was something different about her eyes as she hardly opened them the first two days of her life. But my family doc assured me they were fine and just small. When she was 4wks old, I took her to see a pediatrician. He did not know of BPES but was concerned it was some type of syndrome so sent her for all types of tests including chest x-ray, ultrasound, blood work, etc. It all came back normal. He also sent her for an eye exam (eye doc did not mention BPES) and a hearing test. Again, all normal. He sent in a request to see a geneticist but because of our location, would not see her until 6 mos later. So yesterday, we were finally told that our daughter has BPES. Because I had know idea it existed, I guess I was shocked. All along, I just wanted someone to say that she had small eyes but that was all. Now I hearing/reading things about infertility! That breaks my heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but suffered 3 miscarriages before Halle was born. I know the pain and heartache involved and I wouldn't wish it on Halle for the world. I was just about to sign off the computer when I came across this group. When I started looking at some photos, I started crying because for once, Halle is not the only one who looks like she does. I've been obsessed with looking at babies eyes trying to find someone else who looks like she does. There's something else I need to get out....I am feeling soooooo much guilt. I know that I either subconsiously or knowingly keep my daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I hate myself for it. I love it when we are at home alone or with close family. But when I have to go out somewhere - shopping, etc., I hate for people to look at her because of their response. They see the car seat in the shopping cart and lean down to say "oooohhhh" and then the look on their face when they realize she's different. They stumble over their words and say something like "what a cute outfit" or "how old is she?" My 19yo neice had a daughter 4wks before Halle. The baby was not wanted or planned but is perfect. I look at her and I think how unfair it is that the baby I tried so long to have is not perfect. I HATE myself for that - what kind of mother thinks that about her child. I love her with all my being but what is wrong with me?? Am I ashamed of her???? Please help me, girls!!!! How can I make myself change??? She is such an adorable baby - she deserves better. Thank you all so much for letting me get this out - I feel like a weight has been lifted. I hope to get to know you all better. Love Donna

[Guest guest]

Hi there Donna and Halle, I am assuming that small Canadian island is either PEI or Newfoundland right?? I am from Edmonton Alberta and my son Lynden has BPES (only one in family) he is now 7 years old, he was 1st diagnosed at 5 weeks and had his 1st surgery at 6 1/2 weeks. We have pictures posted if you have not already seen them. they are under Lynden. I know where you are coming from for the guilt and the sadness but as your daughter grows and you have support I think you will be ok.

I can guarantee you will have a flood of responses from some of the lovely families within this group, male, female, young or old, married or single, they all give beautiful advice and I know if there is ANYTHING you need to know someone in this group will let you know the answer.... as for your feeling like it is your fault THAT IS THE LAST THING YOU SHOULD FEEL. You did have a beautiful baby girl and you love her dearly right?? That is all that matters, the only people that are prepared for their kids to may or may not have BPES are the parents with BPES and even then I am positively sure it is still a shock to them. So for you and I and all the other 1st timers to BPES it was quite a shock and no one really knows why except that maybe for us it was a glitch in the reading of the DNA, something that "just happens".... etc... Since we know it was not passed down from a parent.

I am not sure what exactly you know about BPES but that is what I was told by my geneticist. When my son was born it was in November and we had to endure Christmas season at the mall. I always put a Christmas hat on my kids to make them cute so of course they got tons of attention, a lot of people asked me if my son was asleep or really tired or blind or in a fire, had down syndrome, etc... at first i always made sure the stroller covered his face or a blanket was over the stroller then i got sick and tired of ignorant people i eventually just grinned and said nope he is perfect for me if you don't like it don't look. I got and still get the rude comments and I got and get the positive comments and so does he, but you will get that if you have a big nose or big feet or the wrong color of hair, so I look at BPES now as just the way it is and live from there.

As for your daughter you can find out if she has type one or two BPES now so that way you will know if you have to potentially deal with infertility with her, my good friend went to our geneticist and they sent blood samples from all 3 of them and that is the way they found out their daughter had type one, we did the blood sample thing too and we were told that Lynden had type 2 (I am not sure if boys can have type 1, anyone correct me if I am wrong) It does take quite a while for the results because it is still a research thing (experimental ) but it was worth it. Now that you joined this group you will most definitely not be alone and please please do not feel guilty for having Halle, be very thankful that you have her and enjoy her sooooooooo much, life is so short and NO ONE is as important as your children....... Sorry my post is so long but I really feel for you a great deal and do not want you to feel all this guilt or anxiety. So hopefully some of my mumbling helps a bit.....hope to talk to you soon, keep smiling, and think positive.

Tonikka

-----Original Message-----From: newhavenmama [mailto:newhavenmama@...]Sent: November 9, 2004 10:42 AMblepharophimosis Subject: blepharophimosis SOOOO relieved to find you guys!!Hi all ~I am sitting here crying buckets and for the first time am NOT feeling alone in all of this!My name is Donna and I have a 7 month old daughter (Halle ) who has BPES. We were just informed yesterday and up until then had no idea that it was even a condition that existed. Neither my husband or I have BPES nor does anyone else I know of. Because we live on a small Island in Eastern Canada, we do not have many specialists here. When Halle was born, I knew there was something different about her eyes as she hardly opened them the first two days of her life. But my family doc assured me they were fine and just small. When she was 4wks old, I took her to see a pediatrician. He did not know of BPES but was concerned it was some type of syndrome so sent her for all types of tests including chest x-ray, ultrasound, blood work, etc. It all came back normal. He also sent her for an eye exam (eye doc did not mention BPES) and a hearing test. Again, all normal. He sent in a request to see a geneticist but because of our location, would not see her until 6 mos later. So yesterday, we were finally told that our daughter has BPES. Because I had know idea it existed, I guess I was shocked. All along, I just wanted someone to say that she had small eyes but that was all. Now I hearing/reading things about infertility! That breaks my heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but suffered 3 miscarriages before Halle was born. I know the pain and heartache involved and I wouldn't wish it on Halle for the world. I was just about to sign off the computer when I came across this group. When I started looking at some photos, I started crying because for once, Halle is not the only one who looks like she does. I've been obsessed with looking at babies eyes trying to find someone else who looks like she does. There's something else I need to get out....I am feeling soooooo much guilt. I know that I either subconsiously or knowingly keep my daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I hate myself for it. I love it when we are at home alone or with close family. But when I have to go out somewhere - shopping, etc., I hate for people to look at her because of their response. They see the car seat in the shopping cart and lean down to say "oooohhhh" and then the look on their face when they realize she's different. They stumble over their words and say something like "what a cute outfit" or "how old is she?" My 19yo neice had a daughter 4wks before Halle. The baby was not wanted or planned but is perfect. I look at her and I think how unfair it is that the baby I tried so long to have is not perfect. I HATE myself for that - what kind of mother thinks that about her child. I love her with all my being but what is wrong with me?? Am I ashamed of her????Please help me, girls!!!! How can I make myself change??? She is such an adorable baby - she deserves better.Thank you all so much for letting me get this out - I feel like a weight has been lifted. I hope to get to know you all better.LoveDonna

[Guest guest]

Hi Donna,

Welcome to the group! My name is Stina and I'm 27. I live in Sweden and have a wonderful husband and a wonderful daughter, Alice, almost 4 months old. You can se pics of us all under the album "Alice".

I have BEPS. I never knew what it was until a had Alice and she also had it. My father has it as well as my brother and sister but I had never had a diagnosis before I took Alice to an eyedoctor. It was a huge chock! Something that I always thought was just small eyes turned out to be a rare syndrom.

BUT DO NOT EVER feel ashamed of your daughter! She is a miracle as all children and just as perfect as anybody else. Show her to people with pride, she is your wonderful, perfect baby and you love her just as much, or more, as you would if she didn't have BEPS!!

BEPS is not that serious. Ask your-self who is perfect? There's no such thing as perfect. Would you prefer to have a child with BEPS or a child who turned out to be a nazist, drug addict or a murderer? Perfect doesn't lie in physical appearence. It is the heart and soul that counts.

I had two surgeries, one at age 6 and the other at age 17 and now people don't even notice my eyes! I do see the diffrence but other people don't. I wear eye make-up every day but a lot of women do that. I have a wonderful life with my wonderful family and I also have an univercity exam of psychology. My life is great and my eyes haven't stopped me from being a happy person. I had a rough time during high school but a lot of teenagers do. Kids and teens can tease or bully other for whatever reason. It is also a matter of self-confidence and social skills as well as physical appearance.

I feel great about myself and I love my baby to bits! I'm not that worried about her. She will grow up in a very loving family and she will have surgery. She'll be fine!!

Just allow your-self some time to take in the diagnosis and I assure you, you and your daughter will be just fine! You had a chock but it will pass.

I wish you the best!

Lot's of love

Stina

[Guest guest]

Welcome, Welcome, Welcome!

I just took a look at your precious baby girl! She is an absolute

doll! I hope you are finding comfort in this group like I have and

can rest assure knowing everything will be ok. Smile, you are

truly blessed!

[Guest guest]

Hi Donna,

Just wanted to say that although your beautiful wee girl has BPES does not mean she is not perfect! Nobody is perfect! but in parents eyes especially, there children are perfect no matter what:) Don't be ashamed to take her out, I know the steers from people can be upsetting:( but the positive comments and smiles from people outway those negative people. When we get someone just smiling at our wee guy or say how beautiful his smile is, or how they can see he has a great personality, that brings a tear to my eye:) You learn to just see past people steering and ignore it, not totally, but a little, you have too, or it will get to you!

Can't wait to see a pic of your wee girl:) Our son is Ethan C, the younger Ethan wearing the pumpkin outfit @ 9 mths old:) Ethan has had no surgeries as yet, but may-be having a temp ptosis lift at 2 years old?

Take care.....be proud of that little angel!

Leanne and family:)

New-Zealand

-- blepharophimosis SOOOO relieved to find you guys!!

Hi all ~

I am sitting here crying buckets and for the first time am NOT

feeling alone in all of this!

My name is Donna and I have a 7 month old daughter (Halle ) who

has BPES. We were just informed yesterday and up until then had no

idea that it was even a condition that existed. Neither my husband or

I have BPES nor does anyone else I know of. Because we live on a

small Island in Eastern Canada, we do not have many specialists here.

When Halle was born, I knew there was something different about her

eyes as she hardly opened them the first two days of her life. But my

family doc assured me they were fine and just small. When she was

4wks old, I took her to see a pediatrician. He did not know of BPES

but was concerned it was some type of syndrome so sent her for all

types of tests including chest x-ray, ultrasound, blood work, etc. It

all came back normal. He also sent her for an eye exam (eye doc did

not mention BPES) and a hearing test. Again, all normal. He sent in a

request to see a geneticist but because of our location, would not

see her until 6 mos later.

So yesterday, we were finally told that our daughter has BPES.

Because I had know idea it existed, I guess I was shocked. All along,

I just wanted someone to say that she had small eyes but that was

all. Now I hearing/reading things about infertility! That breaks my

heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but

suffered 3 miscarriages before Halle was born. I know the pain and

heartache involved and I wouldn't wish it on Halle for the world.

I was just about to sign off the computer when I came across this

group. When I started looking at some photos, I started crying

because for once, Halle is not the only one who looks like she does.

I've been obsessed with looking at babies eyes trying to find someone

else who looks like she does.

There's something else I need to get out....I am feeling soooooo much

guilt. I know that I either subconsiously or knowingly keep my

daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I hate

myself for it. I love it when we are at home alone or with close

family. But when I have to go out somewhere - shopping, etc., I hate

for people to look at her because of their response. They see the car

seat in the shopping cart and lean down to say "oooohhhh" and then

the look on their face when they realize she's different. They

stumble over their words and say something like "what a cute outfit"

or "how old is she?" My 19yo neice had a daughter 4wks before Halle.

The baby was not wanted or planned but is perfect. I look at her and

I think how unfair it is that the baby I tried so long to have is not

perfect. I HATE myself for that - what kind of mother thinks that

about her child. I love her with all my being but what is wrong with

me?? Am I ashamed of her????

Please help me, girls!!!! How can I make myself change??? She is such

an adorable baby - she deserves better.

Thank you all so much for letting me get this out - I feel like a

weight has been lifted. I hope to get to know you all better.

Love

Donna

[Guest guest]

Hi Donna,

Welcome to the group. Isn't it marvelous to know that you are not

alone?! I too have a daughter who just turned 7 months with BPES.

I, my 2 older sisters and father have BPES. My 2 sisters have 1

child each without BPES. Like you, I was mad and jealous as to why

me and not them? But then I thought, what is perfect? Just because

their kids have bigger eyes than my child doesn't mean that my

daughter is less perfect. BPES is nothing. It just means having

small eyes. Just like having big ears or big nose.

I just looked at the picture and your daughter is beautiful. I had

the same emotional roller coaster ride that you are on. I had the

guilty feelings and the comfort of staying indoors so that I won't

have to deal with ignorant people and unwelcome stares. But I made

a promise to my daughter that I will get over these emotions for the

sake of raising her with confidence. And it was the help from this

group that got me off that emotional roller coaster ride.

Yes people will stare. So what. It is no different from when we

stare at others who are different from us. Yes, people will make

ignorant comments, but that is an opportunity to educate them and

assure them there is nothing wrong with your baby. Majority of the

time, the reason why people stare/comment is because they are

concerned...more so when it is a baby. So try not to take it

personally, it is just human nature to be curious. Take that

opportunity to educate and spread awareness of BPES.

Nowadays, I show off my daughter and I walk proudly with her in my

arms because she is a perfect, beautiful baby. Besides, if we ALL

looked the same, then what kind of world would we be living in...a

very dull and boring one! And as Leanne mentioned...I do get more

positive comments than the negative. I often receive comments of

how cute my daughter is and what a great smile she has. Those

momments do outway the negative.

You are a great mother. Your step into finding out more about BPES

proves that you are a great parent. So stop being hard on yourself,

and be proud to have a beautiful baby.

Take care,

Min

--- In blepharophimosis , " leanne costello " <tltne@x>

wrote:

> Hi Donna,

>

> Just wanted to say that although your beautiful wee girl has BPES

does not

> mean she is not perfect! Nobody is perfect! but in parents eyes

especially,

> there children are perfect no matter what:) Don't be ashamed to

take her out

> I know the steers from people can be upsetting:( but the positive

comments

> and smiles from people outway those negative people. When we get

someone

> just smiling at our wee guy or say how beautiful his smile is, or

how they

> can see he has a great personality, that brings a tear to my eye:)

You learn

> to just see past people steering and ignore it, not totally, but a

little,

> you have too, or it will get to you!

>

> Can't wait to see a pic of your wee girl:) Our son is Ethan C, the

younger

> Ethan wearing the pumpkin outfit @ 9 mths old:) Ethan has had no

surgeries

> as yet, but may-be having a temp ptosis lift at 2 years old?

>

> Take care.....be proud of that little angel!

>

> Leanne and family:)

> New-Zealand

>

> -- blepharophimosis SOOOO relieved to find you guys!!

>

>

>

> Hi all ~

> I am sitting here crying buckets and for the first time am NOT

> feeling alone in all of this!

>

> My name is Donna and I have a 7 month old daughter (Halle )

who

> has BPES. We were just informed yesterday and up until then had no

> idea that it was even a condition that existed. Neither my husband

or

> I have BPES nor does anyone else I know of. Because we live on a

> small Island in Eastern Canada, we do not have many specialists

here.

> When Halle was born, I knew there was something different about her

> eyes as she hardly opened them the first two days of her life. But

my

> family doc assured me they were fine and just small. When she was

> 4wks old, I took her to see a pediatrician. He did not know of BPES

> but was concerned it was some type of syndrome so sent her for all

> types of tests including chest x-ray, ultrasound, blood work, etc.

It

> all came back normal. He also sent her for an eye exam (eye doc did

> not mention BPES) and a hearing test. Again, all normal. He sent

in a

> request to see a geneticist but because of our location, would not

> see her until 6 mos later.

>

> So yesterday, we were finally told that our daughter has BPES.

> Because I had know idea it existed, I guess I was shocked. All

along,

> I just wanted someone to say that she had small eyes but that was

> all. Now I hearing/reading things about infertility! That breaks

my

> heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but

> suffered 3 miscarriages before Halle was born. I know the pain and

> heartache involved and I wouldn't wish it on Halle for the world.

>

> I was just about to sign off the computer when I came across this

> group. When I started looking at some photos, I started crying

> because for once, Halle is not the only one who looks like she

does.

> I've been obsessed with looking at babies eyes trying to find

someone

> else who looks like she does.

>

> There's something else I need to get out....I am feeling soooooo

much

> guilt. I know that I either subconsiously or knowingly keep my

> daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I

hate

> myself for it. I love it when we are at home alone or with close

> family. But when I have to go out somewhere - shopping, etc., I

hate

> for people to look at her because of their response. They see the

car

> seat in the shopping cart and lean down to say " oooohhhh " and then

> the look on their face when they realize she's different. They

> stumble over their words and say something like " what a cute

outfit "

> or " how old is she? " My 19yo neice had a daughter 4wks before

Halle.

> The baby was not wanted or planned but is perfect. I look at her

and

> I think how unfair it is that the baby I tried so long to have is

not

> perfect. I HATE myself for that - what kind of mother thinks that

> about her child. I love her with all my being but what is wrong

with

> me?? Am I ashamed of her????

>

> Please help me, girls!!!! How can I make myself change??? She is

such

> an adorable baby - she deserves better.

>

> Thank you all so much for letting me get this out - I feel like a

> weight has been lifted. I hope to get to know you all better.

>

> Love

> Donna

>

>

>

>

>

>

>

>

>

[Guest guest]

-Hi Donna, My name is Jill. I am Ruths mom. She has BPES. I have 3

other children who do not have it. Ruth is almost a year old(Nov.

27). She is the first in our family to have BPES. When she was born

no one seemed to know what she had. We were first sent to adult eye

doctors who had no idea what they were supposed to be looking for.

One of them suggested we see an childrens specialist. We wre sent to

Boston Childrens Hospital were we met Ruths Dr. She is wonderful. She

knew right away when she saw Ruth what she had and was able to

explain it to us. Ruth has had one surgery to open up her eyes a

little bit because the eye lids were partially blocking her pupils.

She sees great now. I think she is the most beautiful baby. It is

very upsetting when people look at her and talk about her eyes. I

have had people ask if she is adopted because they say she looks

asian. It seems to be the first thing you hear people say. I am so

glad I found this site. It has helped alot. All of our children are

beautiful and unique. We are from Massachusetts. I have not heard of

anyone in my area with BPES. I would love if we could all get

together but everyone on the website in the US and Canada seem to be

so far spread out. Are you very far from the border. I would highly

recommend Boston Childrens Hospital and Ruths Dr. Dagi.-- In

blepharophimosis , " newhavenmama " <newhavenmama@h...>

wrote:

>

>

> Hi all ~

> I am sitting here crying buckets and for the first time am NOT

> feeling alone in all of this!

>

> My name is Donna and I have a 7 month old daughter (Halle )

who

> has BPES. We were just informed yesterday and up until then had no

> idea that it was even a condition that existed. Neither my husband

or

> I have BPES nor does anyone else I know of. Because we live on a

> small Island in Eastern Canada, we do not have many specialists

here.

> When Halle was born, I knew there was something different about her

> eyes as she hardly opened them the first two days of her life. But

my

> family doc assured me they were fine and just small. When she was

> 4wks old, I took her to see a pediatrician. He did not know of BPES

> but was concerned it was some type of syndrome so sent her for all

> types of tests including chest x-ray, ultrasound, blood work, etc.

It

> all came back normal. He also sent her for an eye exam (eye doc did

> not mention BPES) and a hearing test. Again, all normal. He sent in

a

> request to see a geneticist but because of our location, would not

> see her until 6 mos later.

>

> So yesterday, we were finally told that our daughter has BPES.

> Because I had know idea it existed, I guess I was shocked. All

along,

> I just wanted someone to say that she had small eyes but that was

> all. Now I hearing/reading things about infertility! That breaks

my

> heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but

> suffered 3 miscarriages before Halle was born. I know the pain and

> heartache involved and I wouldn't wish it on Halle for the world.

>

> I was just about to sign off the computer when I came across this

> group. When I started looking at some photos, I started crying

> because for once, Halle is not the only one who looks like she

does.

> I've been obsessed with looking at babies eyes trying to find

someone

> else who looks like she does.

>

> There's something else I need to get out....I am feeling soooooo

much

> guilt. I know that I either subconsiously or knowingly keep my

> daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I

hate

> myself for it. I love it when we are at home alone or with close

> family. But when I have to go out somewhere - shopping, etc., I

hate

> for people to look at her because of their response. They see the

car

> seat in the shopping cart and lean down to say " oooohhhh " and then

> the look on their face when they realize she's different. They

> stumble over their words and say something like " what a cute

outfit "

> or " how old is she? " My 19yo neice had a daughter 4wks before

Halle.

> The baby was not wanted or planned but is perfect. I look at her

and

> I think how unfair it is that the baby I tried so long to have is

not

> perfect. I HATE myself for that - what kind of mother thinks that

> about her child. I love her with all my being but what is wrong

with

> me?? Am I ashamed of her????

>

> Please help me, girls!!!! How can I make myself change??? She is

such

> an adorable baby - she deserves better.

>

> Thank you all so much for letting me get this out - I feel like a

> weight has been lifted. I hope to get to know you all better.

>

> Love

> Donna

[Guest guest]

Donna, welcome to the group although you have had mnay welcomes. I

think your message touched a lot of people. Your little Halle is

gorgeous. I love looking at the photos of babes with BPES & I`m

amazed that so many times I think how much they resemlbe my own

child when she was born with BPES. Even my husband comments - they

look just like did!

Because I had BPES but had never seen another person with it & didn`t

even know it had a name, I was a bit concerned while pregnant that my

child might have `my eyes`. Never really gave it much thought as I

was enjoying being pregnant. It did come as a bit of a shock tho` & I

have to admit I was disappointed at times, with feelings of ~Why me?

I have 6 brothers & sisters, all without BPES & neither of my parents

& now I have `given it` to my child. Guilt yes. Shame yes. All

unfounded really. But I would hold her in my arms when we were alone

& just look at her & think how beautiful she was. Then I`d think

about all she`d have to go through, as I did, & I wanted to hide her

& protect her & punch anybody who dared to stare longer than 2

seconds!!

But I never did, & she has grown into a lovely girl whom we`re real

proud of. Shes a strong individual with a lovely heart for anyone

`different`. Great personality with loads of friends.

My heart goes out to you Donna but you`re in the right place with

this group. You will find a lot of help, support & friends here. If

you get time go back to previous posts - you`ll be amazed at what you

read & you`ll see again YOU ARE NOT ALONE IN THIS!! I only discovered

the group a few months ago & couldn`t believe all these people with

BPES! It was like I`d come home!!

Also remember you are the best mother for your little girl - NOONE

else can do the job as well as you. So pack up your feelings of shame

& guilt - they are useless `baggage`anyway - & drop them in the

nearest trashcan. Then get together with your family, hug them to

bits all the time & enjoy the preciousness of life. & Remember THERES

ALWAYS THE GROUP!!!!!!!!!!!!!1

>

>

> Hi all ~

> I am sitting here crying buckets and for the first time am NOT

> feeling alone in all of this!

>

> My name is Donna and I have a 7 month old daughter (Halle )

who

> has BPES. We were just informed yesterday and up until then had no

> idea that it was even a condition that existed. Neither my husband

or

> I have BPES nor does anyone else I know of. Because we live on a

> small Island in Eastern Canada, we do not have many specialists

here.

> When Halle was born, I knew there was something different about her

> eyes as she hardly opened them the first two days of her life. But

my

> family doc assured me they were fine and just small. When she was

> 4wks old, I took her to see a pediatrician. He did not know of BPES

> but was concerned it was some type of syndrome so sent her for all

> types of tests including chest x-ray, ultrasound, blood work, etc.

It

> all came back normal. He also sent her for an eye exam (eye doc did

> not mention BPES) and a hearing test. Again, all normal. He sent in

a

> request to see a geneticist but because of our location, would not

> see her until 6 mos later.

>

> So yesterday, we were finally told that our daughter has BPES.

> Because I had know idea it existed, I guess I was shocked. All

along,

> I just wanted someone to say that she had small eyes but that was

> all. Now I hearing/reading things about infertility! That breaks

my

> heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but

> suffered 3 miscarriages before Halle was born. I know the pain and

> heartache involved and I wouldn't wish it on Halle for the world.

>

> I was just about to sign off the computer when I came across this

> group. When I started looking at some photos, I started crying

> because for once, Halle is not the only one who looks like she

does.

> I've been obsessed with looking at babies eyes trying to find

someone

> else who looks like she does.

>

> There's something else I need to get out....I am feeling soooooo

much

> guilt. I know that I either subconsiously or knowingly keep my

> daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I

hate

> myself for it. I love it when we are at home alone or with close

> family. But when I have to go out somewhere - shopping, etc., I

hate

> for people to look at her because of their response. They see the

car

> seat in the shopping cart and lean down to say " oooohhhh " and then

> the look on their face when they realize she's different. They

> stumble over their words and say something like " what a cute

outfit "

> or " how old is she? " My 19yo neice had a daughter 4wks before

Halle.

> The baby was not wanted or planned but is perfect. I look at her

and

> I think how unfair it is that the baby I tried so long to have is

not

> perfect. I HATE myself for that - what kind of mother thinks that

> about her child. I love her with all my being but what is wrong

with

> me?? Am I ashamed of her????

>

> Please help me, girls!!!! How can I make myself change??? She is

such

> an adorable baby - she deserves better.

>

> Thank you all so much for letting me get this out - I feel like a

> weight has been lifted. I hope to get to know you all better.

>

> Love

> Donna

[Guest guest]

HE Y JILL, MY SON AEDAN HAS BPES. HE IS 2 1/2 YRS OLD. WE LIVE IN NYC, ME MY

WIFE AND DAUGHTER RAINA. WE HAVE FAMILY UP IN THE WHITE MTNS OF N.H. WOULD

LOVE TO HEAR FROM FELLOW NORTHEASTERS INCLUDING CANADA, DONNA( BEEN TO PEI AND

THE MADELINES), FOR A GET TOGETHER MAYBE. LOVE ALL TIMOTHY.

[Guest guest]

Hi Donna.. welcome to the group.. Like everybody else your letter was very familiar to me. My son Ethan (in photo album Ethan and family) is the only one in all my family of 4 boys to have BPES.. and until he was diagnosed we had never heard of it either. It was a shock because he also spent a three days in Aucklands Starship hospital having all sorts of horrible tests to rule out possibilities. He endured lumbar punctures, muscles biopsies, cat scans.. the list goes on.... and he finally was diagnosed at 2 and had his ptosis surgery by 2 1/2. I feel his surgery was very successful and in his before and after photos the difference is incredible.

We get the stares and rude comments and depending on my mood at the time depends on how i react. A few times i have had the heart to explain to people about the syndrome and a few times i have just said 'Dont be so dam nosy!" But i must say as they get older it gets a lot easier and less noticable. My Ethan was 5 in June and just loves being at school. I was really apprehensive about him going as i couldnt stick up for him with the other kids at school if they teased him. But his teacher was great, she took him to all the classes and introduced him and explained why he looks a little bit different. She explained it as i do to people, he was born with no creases in his eyelids so the dr had to make some. If anything the kids really watch out for him and the girls in his class go out of their way to mollycoddle him!! He has a teachers aide for 17 hours per week as he has very low muscle tone, which means he is still nappies and he also has poor motor skills and balance.But he is coping and the more he copes the easier it is for me.

Good luck to you and your family. Try to stay positive and just be thankful that your daughter has arms and legs and can hear and see. There ARE children a lot worse off. I think going to starship really opened up my eys as we spent 3 days in the neurosurgical ward where we met a little 7 year year old who has a brain tumour and having ongoing chemo. Than a little 4 year old we know also got diagnosed with a tumour in his brain which is cancer. These k8ids are spending months and months in hospital..Our kids have Nothing compared to others. I am in no way trying to minimise your daughter at all but just sharing the things that changed my thoughts from sad and desperate to more positive ones. Hope you can understand that.

Take Care and try to keep smiling.

Leah

blepharophimosis SOOOO relieved to find you guys!!

Hi all ~I am sitting here crying buckets and for the first time am NOT feeling alone in all of this!My name is Donna and I have a 7 month old daughter (Halle ) who has BPES. We were just informed yesterday and up until then had no idea that it was even a condition that existed. Neither my husband or I have BPES nor does anyone else I know of. Because we live on a small Island in Eastern Canada, we do not have many specialists here. When Halle was born, I knew there was something different about her eyes as she hardly opened them the first two days of her life. But my family doc assured me they were fine and just small. When she was 4wks old, I took her to see a pediatrician. He did not know of BPES but was concerned it was some type of syndrome so sent her for all types of tests including chest x-ray, ultrasound, blood work, etc. It all came back normal. He also sent her for an eye exam (eye doc did not mention BPES) and a hearing test. Again, all normal. He sent in a request to see a geneticist but because of our location, would not see her until 6 mos later. So yesterday, we were finally told that our daughter has BPES. Because I had know idea it existed, I guess I was shocked. All along, I just wanted someone to say that she had small eyes but that was all. Now I hearing/reading things about infertility! That breaks my heart because I have an 8 yo and a 6 yo (both do NOT have BPES)but suffered 3 miscarriages before Halle was born. I know the pain and heartache involved and I wouldn't wish it on Halle for the world. I was just about to sign off the computer when I came across this group. When I started looking at some photos, I started crying because for once, Halle is not the only one who looks like she does. I've been obsessed with looking at babies eyes trying to find someone else who looks like she does. There's something else I need to get out....I am feeling soooooo much guilt. I know that I either subconsiously or knowingly keep my daughter from being seen by others - HOW HORRIBLE IS THAT!!??? I hate myself for it. I love it when we are at home alone or with close family. But when I have to go out somewhere - shopping, etc., I hate for people to look at her because of their response. They see the car seat in the shopping cart and lean down to say "oooohhhh" and then the look on their face when they realize she's different. They stumble over their words and say something like "what a cute outfit" or "how old is she?" My 19yo neice had a daughter 4wks before Halle. The baby was not wanted or planned but is perfect. I look at her and I think how unfair it is that the baby I tried so long to have is not perfect. I HATE myself for that - what kind of mother thinks that about her child. I love her with all my being but what is wrong with me?? Am I ashamed of her????Please help me, girls!!!! How can I make myself change??? She is such an adorable baby - she deserves better.Thank you all so much for letting me get this out - I feel like a weight has been lifted. I hope to get to know you all better.LoveDonna

[Guest guest]

Hi Donna,

Wow. Thank you for your honest sharing. Though I've thought

and felt many things your verbalized, I didn't have the courage to

say them aloud. Thank you for your courage.

First of all, you asked " How can I make myself change? " The

answer is time. You have to give yourself time. You can feel

ashamed of yourself if you must. But the feelings you are

experiencing are normal and will pass. You don't have to realize

how lucky you are right now -- but you will later. Right now it is

very natural to grieve.

My daughter , 6, was diagnosed with BPES at about 6

weeks. I asked myself if I would ever look at her and NOT think

about it, and see something other than the different eyes. I

stopped wearing eye makeup -- all of a sudden my own eyes

seemed huge and I hated them for the unfairness of it all. My

older son has big huge beautiful eyes, and I loathed those eyes

for their mockery, if that makes any sense. I was angry at the

unfairness of it, and mad at myself for my own reaction to it. I

remember admitting to my husband some similar thoughts to

what you are sharing.

The good news is that " This too shall pass. " In fact, I think that

this has been a blessing in 's life in some ways. For

example, she is memorable. Therefore, the people in our town

do remember her, and everywhere we go, people are really

friendly to her. (I think I've finally gotten the hang of talking with

people who know us that I don't remember ever seeing. I think

this has impacted her personality development in some really

positive ways.

That isn't to say that it doesn't suck, too. It does. is

scheduled for her 4th surgery in January. Yuck. And she has to

deal with " The Question. " (ie, " What's wrong with your eyes? " )

But I have LONG ago stopped thinking about it when I look at her,

and she is a happy, outgoing 6 year old with lots of friends. Just

give yourself a little time -- and permission -- to feel what you

must without being too hard on yourself.

Best, Dawn

> blepharophimosis SOOOO relieved to find you

guys!!

>

>

>

>

>

> Hi all ~

> I am sitting here crying buckets and for the first time am NOT

> feeling alone in all of this!

>

> My name is Donna and I have a 7 month old daughter (Halle

) who

> has BPES. We were just informed yesterday and up until

then had no

> idea that it was even a condition that existed. Neither my

husband or

> I have BPES nor does anyone else I know of. Because we

live on a

> small Island in Eastern Canada, we do not have many

specialists here.

> When Halle was born, I knew there was something different

about her

> eyes as she hardly opened them the first two days of her life.

But my

> family doc assured me they were fine and just small. When

she was

> 4wks old, I took her to see a pediatrician. He did not know of

BPES

> but was concerned it was some type of syndrome so sent

her for all

> types of tests including chest x-ray, ultrasound, blood work,

etc. It

> all came back normal. He also sent her for an eye exam (eye

doc did

> not mention BPES) and a hearing test. Again, all normal. He

sent in a

> request to see a geneticist but because of our location,

would not

> see her until 6 mos later.

>

> So yesterday, we were finally told that our daughter has

BPES.

> Because I had know idea it existed, I guess I was shocked.

All along,

> I just wanted someone to say that she had small eyes but

that was

> all. Now I hearing/reading things about infertility! That

breaks my

> heart because I have an 8 yo and a 6 yo (both do NOT have

BPES)but

> suffered 3 miscarriages before Halle was born. I know the

pain and

> heartache involved and I wouldn't wish it on Halle for the

world.

>

> I was just about to sign off the computer when I came across

this

> group. When I started looking at some photos, I started

crying

> because for once, Halle is not the only one who looks like

she does.

> I've been obsessed with looking at babies eyes trying to find

someone

> else who looks like she does.

>

> There's something else I need to get out....I am feeling

soooooo much

> guilt. I know that I either subconsiously or knowingly keep

my

> daughter from being seen by others - HOW HORRIBLE IS

THAT!!??? I hate

> myself for it. I love it when we are at home alone or with

close

> family. But when I have to go out somewhere - shopping,

etc., I hate

> for people to look at her because of their response. They see

the car

> seat in the shopping cart and lean down to say " oooohhhh "

and then

> the look on their face when they realize she's different. They

> stumble over their words and say something like " what a

cute outfit "

> or " how old is she? " My 19yo neice had a daughter 4wks

before Halle.

> The baby was not wanted or planned but is perfect. I look at

her and

> I think how unfair it is that the baby I tried so long to have is

not

> perfect. I HATE myself for that - what kind of mother thinks

that

> about her child. I love her with all my being but what is wrong

with

> me?? Am I ashamed of her????

>

> Please help me, girls!!!! How can I make myself change???

She is such

> an adorable baby - she deserves better.

>

> Thank you all so much for letting me get this out - I feel like a

> weight has been lifted. I hope to get to know you all better.

>

> Love

> Donna

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Dawn,

Your email was so nice to read - I can tell that what I'm feeling is

not unusual and that definately helps. I am trying so hard to accept

this and to stop 'hiding' my beautiful daughter. Buts its not that

easy, I've discovered. Something I've never done was have her

pictures done professionally...by this age, I had my son and

daughter's done several times. So this week, I took her in and had

them done - she was so good - smiled everytime and the photographer

couldn't believe how good-natured she was. I will scan and post one

when I get them back! So that was a 'step', I think!

I can see how people 'remember' your daughter - I have a feeling

folks around here will be the same way. We are such a small place but

believe me, word travels fast! So now that I've told a few people

about the bleph, I can guarantee the news will spread like wild fire!

And that's is comforting in a way - it will mean people will

understand and maybe won't ask 'that' question. Anyway, I know you're

right - that time will make it easier....but it sure helps to hear

that others feel or felt like I do.

Thanks so much for your email!

Donna

-- In blepharophimosis , " readconnect " <dharry11@f...>

wrote:

>

> Hi Donna,

>

> Wow. Thank you for your honest sharing. Though I've thought

> and felt many things your verbalized, I didn't have the courage to

> say them aloud. Thank you for your courage.

>

> First of all, you asked " How can I make myself change? " The

> answer is time. You have to give yourself time. You can feel

> ashamed of yourself if you must. But the feelings you are

> experiencing are normal and will pass. You don't have to realize

> how lucky you are right now -- but you will later. Right now it is

> very natural to grieve.

>

> My daughter , 6, was diagnosed with BPES at about 6

> weeks. I asked myself if I would ever look at her and NOT think

> about it, and see something other than the different eyes. I

> stopped wearing eye makeup -- all of a sudden my own eyes

> seemed huge and I hated them for the unfairness of it all. My

> older son has big huge beautiful eyes, and I loathed those eyes

> for their mockery, if that makes any sense. I was angry at the

> unfairness of it, and mad at myself for my own reaction to it. I

> remember admitting to my husband some similar thoughts to

> what you are sharing.

>

> The good news is that " This too shall pass. " In fact, I think that

> this has been a blessing in 's life in some ways. For

> example, she is memorable. Therefore, the people in our town

> do remember her, and everywhere we go, people are really

> friendly to her. (I think I've finally gotten the hang of talking

with

> people who know us that I don't remember ever seeing. I think

> this has impacted her personality development in some really

> positive ways.

>

> That isn't to say that it doesn't suck, too. It does. is

> scheduled for her 4th surgery in January. Yuck. And she has to

> deal with " The Question. " (ie, " What's wrong with your eyes? " )

> But I have LONG ago stopped thinking about it when I look at her,

> and she is a happy, outgoing 6 year old with lots of friends. Just

> give yourself a little time -- and permission -- to feel what you

> must without being too hard on yourself.

>

> Best, Dawn

>

> > blepharophimosis SOOOO relieved to find you

> guys!!

> >

> >

> >

> >

> >

> > Hi all ~

> > I am sitting here crying buckets and for the first time am

NOT

> > feeling alone in all of this!

> >

> > My name is Donna and I have a 7 month old daughter (Halle

> ) who

> > has BPES. We were just informed yesterday and up until

> then had no

> > idea that it was even a condition that existed. Neither my

> husband or

> > I have BPES nor does anyone else I know of. Because we

> live on a

> > small Island in Eastern Canada, we do not have many

> specialists here.

> > When Halle was born, I knew there was something different

> about her

> > eyes as she hardly opened them the first two days of her

life.

> But my

> > family doc assured me they were fine and just small. When

> she was

> > 4wks old, I took her to see a pediatrician. He did not know

of

> BPES

> > but was concerned it was some type of syndrome so sent

> her for all

> > types of tests including chest x-ray, ultrasound, blood work,

> etc. It

> > all came back normal. He also sent her for an eye exam (eye

> doc did

> > not mention BPES) and a hearing test. Again, all normal. He

> sent in a

> > request to see a geneticist but because of our location,

> would not

> > see her until 6 mos later.

> >

> > So yesterday, we were finally told that our daughter has

> BPES.

> > Because I had know idea it existed, I guess I was shocked.

> All along,

> > I just wanted someone to say that she had small eyes but

> that was

> > all. Now I hearing/reading things about infertility! That

> breaks my

> > heart because I have an 8 yo and a 6 yo (both do NOT have

> BPES)but

> > suffered 3 miscarriages before Halle was born. I know the

> pain and

> > heartache involved and I wouldn't wish it on Halle for the

> world.

> >

> > I was just about to sign off the computer when I came across

> this

> > group. When I started looking at some photos, I started

> crying

> > because for once, Halle is not the only one who looks like

> she does.

> > I've been obsessed with looking at babies eyes trying to find

> someone

> > else who looks like she does.

> >

> > There's something else I need to get out....I am feeling

> soooooo much

> > guilt. I know that I either subconsiously or knowingly keep

> my

> > daughter from being seen by others - HOW HORRIBLE IS

> THAT!!??? I hate

> > myself for it. I love it when we are at home alone or with

> close

> > family. But when I have to go out somewhere - shopping,

> etc., I hate

> > for people to look at her because of their response. They see

> the car

> > seat in the shopping cart and lean down to say " oooohhhh "

> and then

> > the look on their face when they realize she's different.

They

> > stumble over their words and say something like " what a

> cute outfit "

> > or " how old is she? " My 19yo neice had a daughter 4wks

> before Halle.

> > The baby was not wanted or planned but is perfect. I look at

> her and

> > I think how unfair it is that the baby I tried so long to

have is

> not

> > perfect. I HATE myself for that - what kind of mother thinks

> that

> > about her child. I love her with all my being but what is

wrong

> with

> > me?? Am I ashamed of her????

> >

> > Please help me, girls!!!! How can I make myself change???

> She is such

> > an adorable baby - she deserves better.

> >

> > Thank you all so much for letting me get this out - I feel

like a

> > weight has been lifted. I hope to get to know you all better.

> >

> > Love

> > Donna

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >