Hi everyone

[Guest guest]

As a person who has BPES in her family, I just want to say I don't

think of it as debilitating. It gets better as you mature, I truly

didn't think about it much until I had my daughter. When I was a kid

I had to explain it to other children all the time, but I guess I

just got used to it. It's weird but my parents never treated it as

a health issue, because to them it didn't impair my health at all.

It just made me look a little different. My dad has it too, and my

mom wears glasses, and we just were the way we were, a family who

loved each other. My parents thought I was beautiful and I really

believed them. My mother is an amazing person.

My heart breaks all the time for my baby daughter, I am a teacher

and when I bring her into school, some children say to me, her eyes

are so tiny, or her eyes look weird. And it hurts, because I can't

stand to think that her peers will say that to her, and she will

have to respond, I won't always be there. I just tell them, she is

like me, and they are satisfied with that for now. But more children

say, oh she is so cute. And she is cute. I am hoping that the later

surgeries will help, although I don't think she looks weird now, the

epicanthus is an issue but otherwise she looks beautiful. And more

importantly,she can see.

It doesn't comfort me to say oh there are other sick children, I

guess because really, the vast majority of kids are born normal.

They have problems that are diagnosed much later, but when their

parents bring them home, they feel secure that everything is okay

with their babies. I wish that my husband and I could have

exerienced that, and I know it is selfish. I want another child but

I just don't know if I can manage in the next few years to keep

working,have Lily's surgeries and have a new baby who will possibly

need surgery. We have been under too much stress. This I will try to

leave up to God.

Where is Dr. Jules Stein?