Re: Twins with Blepharophimosis

[Guest guest]

The twins are precious! It never hurts to get a second opinion-especially if the first doctor you saw was not familiar with BPES. It is not always easy to overlook peoples ignorance in labeling our children as "looking tired" but you just have to push on. Teach your children to be confident and know they are beautiful.

Best Wishes

The Barrow Family

From: valganim <valganim@...>Subject: blepharophimosis Twins with Blepharophimosisblepharophimosis Date: Thursday, May 28, 2009, 1:04 PM

Hello everyone in the same situation. When my twins were born the doctors notice their eyes being very small so we where sent to the eye doctor. Then we where sent to Bascom Palmer in Miami. The doctors told us to wait until they are around 4 years old. I get sick of people telling me my kids look tired.

[Guest guest]

Hello all! I share the same feelings as the previous post about the "tired" comments. I will really try not to get on a soap box here because I might have missed all previous conversations regarding this topic, but maybe it can help some newbies? I can only tell how I feel as a mom, who is new to this and motherhood. Miss Payton is 11 months old and the slings that were put in at 7 weeks have since lowered with time (and that she's growing a mile a minute is changing everything...and we knew this could be an issue). Many times people say "oh she looks so tired" and I only think... I wish! She's such a wonderful child and even though she will have to have another surgery soon, the eye thing just does not stop her! It does not keep her from seeing the smallest things! Right now she's "giving" me everything so I say "thank you!!"....she's keeping my floor

cleaner than I could! She will pick up littlest pieces of dirt that I don't even see! So as far as her being "tired", I can only say...I don't think so! The only thing that I have found that works for me is to try and explain it (if I have the energy). I just say no, actually...it's the weirdest thing..... Truly...as a new mommy to a wonderful daughter with Bleph..I have learned that this is not the worst thing..and even though I had very emotional pre-conceived notions about how this might go..they are not what I thought. Just tell them that they are not tired and why. I try to believe that people are truly caring and interested. It's Bleph and we live with it every day. Even though we have struggles. How many of us can say that we don't smile a thousand times a day? I think that I try to believe that people are so very interested in such a rare condition that they feel priviliged to have someone explain it in simple terms, and in instances where

they might be personally connected to a very personable moment with my child. We all don't know why. It just is. I hope that people can see my daughter for what I do.... Have a great night. I'm thankful that the group is here....Welcome to all the new people!!! From: valganim <valganim@...>Subject: blepharophimosis Twins with Blepharophimosisblepharophimosis Date: Thursday, May 28, 2009, 10:04 AM

Hello everyone in the same situation. When my twins were born the doctors notice their eyes being very small so we where sent to the eye doctor. Then we where sent to Bascom Palmer in Miami. The doctors told us to wait until they are around 4 years old. I get sick of people telling me my kids look tired.

[Guest guest]

Hello all! I share the same feelings as the previous post about the "tired" comments. I will really try not to get on a soap box here because I might have missed all previous conversations regarding this topic, but maybe it can help some newbies? I can only tell how I feel as a mom, who is new to this and motherhood. Miss Payton is 11 months old and the slings that were put in at 7 weeks have since lowered with time (and that she's growing a mile a minute is changing everything...and we knew this could be an issue). Many times people say "oh she looks so tired" and I only think... I wish! She's such a wonderful child and even though she will have to have another surgery soon, the eye thing just does not stop her! It does not keep her from seeing the smallest things! Right now she's "giving" me everything so I say "thank you!!"....she's keeping my floor

cleaner than I could! She will pick up littlest pieces of dirt that I don't even see! So as far as her being "tired", I can only say...I don't think so! The only thing that I have found that works for me is to try and explain it (if I have the energy). I just say no, actually...it's the weirdest thing..... Truly...as a new mommy to a wonderful daughter with Bleph..I have learned that this is not the worst thing..and even though I had very emotional pre-conceived notions about how this might go..they are not what I thought. Just tell them that they are not tired and why. I try to believe that people are truly caring and interested. It's Bleph and we live with it every day. Even though we have struggles. How many of us can say that we don't smile a thousand times a day? I think that I try to believe that people are so very interested in such a rare condition that they feel priviliged to have someone explain it in simple terms, and in instances where

they might be personally connected to a very personable moment with my child. We all don't know why. It just is. I hope that people can see my daughter for what I do.... Have a great night. I'm thankful that the group is here....Welcome to all the new people!!! From: valganim <valganim@...>Subject: blepharophimosis Twins with Blepharophimosisblepharophimosis Date: Thursday, May 28, 2009, 10:04 AM

Hello everyone in the same situation. When my twins were born the doctors notice their eyes being very small so we where sent to the eye doctor. Then we where sent to Bascom Palmer in Miami. The doctors told us to wait until they are around 4 years old. I get sick of people telling me my kids look tired.

[Guest guest]

Oh the twins are just adorable!

I think you put that so well and the way you are so positive is like a

breath of fresh air!

I too am like in that when someone says my kids look tired I take that as

my opportunity to explain the situation to them and I find that people are so

interested in what I am telling them.

I did the same thing when I got comments as I grew up and I had no hassles at

all with teasing or anything like that. I mean yes kids would say nasty things

but I always explained that I just had different eyes that had were smaller and

developed differently (as I didn't know anything about bleph at that time) and

once they realised I didn't care they wouldn't say anymore about it. I guess

it's like a game of cards - if you lay all your cards on the table then they

know everything and won't have to ask any questions and will hopefully accept it

for what it is.

Australia

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> From: valganim <valganim@...>

> Subject: blepharophimosis Twins with Blepharophimosis

> blepharophimosis

> Date: Thursday, May 28, 2009, 10:04 AM

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> Hello everyone in the same situation. When my twins were born the

doctors notice their eyes being very small so we where sent to the eye doctor.

Then we where sent to Bascom Palmer in Miami. The doctors told us to wait until

they are around 4 years old. I get sick of people telling me my kids look

tired.

>

[Guest guest]

Dear ,

What a wonderful e-mail! Thank you for your words. Terry - Edgerton, WI USA

From: N L <thenicolelahaie@...>blepharophimosis Sent: Friday, May 29, 2009 12:42:01 AMSubject: Re: blepharophimosis Twins with Blepharophimosis

Hello all! I share the same feelings as the previous post about the "tired" comments. I will really try not to get on a soap box here because I might have missed all previous conversations regarding this topic, but maybe it can help some newbies? I can only tell how I feel as a mom, who is new to this and motherhood. Miss Payton is 11 months old and the slings that were put in at 7 weeks have since lowered with time (and that she's growing a mile a minute is changing everything.. .and we knew this could be an issue). Many times people say "oh she looks so tired" and I only think... I wish! She's such a wonderful child and even though she will have to have another surgery soon, the eye thing just does not stop her! It does not keep her from seeing the smallest things! Right now she's "giving" me everything so I say "thank you!!"....she' s keeping my floor cleaner than I could! She will pick up littlest pieces of dirt that I don't even

see! So as far as her being "tired", I can only say...I don't think so! The only thing that I have found that works for me is to try and explain it (if I have the energy). I just say no, actually...it' s the weirdest thing..... Truly...as a new mommy to a wonderful daughter with Bleph..I have learned that this is not the worst thing..and even though I had very emotional pre-conceived notions about how this might go..they are not what I thought. Just tell them that they are not tired and why. I try to believe that people are truly caring and interested. It's Bleph and we live with it every day. Even though we have struggles. How many of us can say that we don't smile a thousand times a day? I think that I try to believe that people are so very interested in such a rare condition that they feel priviliged to have someone explain it in simple terms, and in instances where they might be personally connected to a very personable moment with my child. We

all don't know why. It just is. I hope that people can see my daughter for what I do.... Have a great night. I'm thankful that the group is here....Welcome to all the new people!!!

From: valganim <valganim (DOT) com>Subject: blepharophimosis Twins with BlepharophimosisblepharophimosisDate: Thursday, May 28, 2009, 10:04 AM

Hello everyone in the same situation. When my twins were born the doctors notice their eyes being very small so we where sent to the eye doctor. Then we where sent to Bascom Palmer in Miami. The doctors told us to wait until they are around 4 years old. I get sick of people telling me my kids look tired.