Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 - In reply to your post, I can say that, esspecially going through school, it wasn't picture perfect. My parents have been 100% supportive w/ everything. Like most teenagers, I didn't really go for the " if they say anything to you just ingore them " phrase, or the whole " we know what you are going through " . At the same time I could tell you that it would of helped me a lot to have someone my age who also had bleph. but we all know that isnt the most realistic thing b/c it's so rare. That's why I think this group is so important. My sister also has bleph but as she will read this post, along w/ others, we lived hours away and only became close within this past couple of years, plus there is a 12 yr age difference. With a group like this, you will be more likely to have the opportunity to meet w/ someone who is around Aedan's age who is going through the same things. Even if they only see each other every couple of months, Aedan would have that connection w/ someone who is going through the same thing. Plus it does help is just letting Aedan know that you are there for them no matter what. From experience, the older you get you realize things are how they are and I'm lucky for what I do have. Plus I wouldnt be as strong of a person now, if i didn't go through what i went through b4. On a different thought, I would be up front w/ your child about what blepharophimosis is. Kids would ask me what was wrong w/ me, and all I knew was i was born like this. That's honestly my response for years to any questions or comments. I didn't know all the details that I wish I knew. I was def. uneducated about it, considering how many surgeries I went through. - Quote Link to comment Share on other sites More sharing options...
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