SOOOO relieved to find you guys!!

[Guest guest]

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