Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Thanks for your sweet words, Dawn. Yes, you're not alone. I'm very happy you found us and that you would like to stay. [ ] Love this group! > , > What you are all doing with this group is wonderful!! I love coming on > my computer now and catching up with what is going on in everyone's life. I > have received many e-mails directly, and all of them seem like excerpts from > my own life. Many have brought tears to my eyes to hear of everyone's pain, > surgeries, struggles, medication worries, loss of loved pets, and beautiful > weddings. My fiance has found me at the computer with tears streaming down > my face more than once in the past week since I found you all, and I tell > him that they are not tears of sorrow, but tears of joy at finding everyone > of you who are so much like me. > One of the hardest things I think about having RA, is the feeling like > you are the only one. I can't believe there are so many of you! You all > seem like such nice people and I am very glad to have " met " you all, > although I wish it was under different circumstances. I guess that old > saying that goes like this " Whatever doesn't kill you makes you stronger " is > true. If that is the case, I think we are some of the strongest people in > the world! > Thank you for letting me join in and welcoming me the way you have. I > look forward to being here with you all for the duration!! Wishing you all > luck and comfortable days! > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 -Welcome to the group Min! Looking back through the messages will help you a lot as to how to help your child cope with BPES. I have BPES & also my 18yr old daughter (only us in the whole family) I had some surgery as a baby & then again when I was 15yrs old (my choice) has only had surgery as a 13yr old & will have some more soon. It depends a lot on each childs specific needs as to when the doctors decide what they should do & at what age. keep affirming your child as she is - special, unique & gorgeous - but not perfect because nobody is! And what is `perfect` anyway? Talk to your child about how people have different shaped eyes, noses, ears etc & that is a good thing to do with their schoolmates as well. Bye for now Maree -- In blepharophimosis , " minnielin202 " <minnielin202@y...> wrote: > Hi Everyone, > I recently found this group and I am thankful that there are several > people with BPES. My daughter (6mo) and I have BPES. My father and > 2 older sisters have BPES. I am Korean and it feels good to see > that non-Asian family have this trait. > > I'm looking for someone who had their child go through the eyelid > surgery...the " sling " surgery. My doctors are suggesting that my > daughter go through with the surgery at a young age and I am not > comfortable with it. I had my surgery at age 7 and I wished that my > parents didn't do that, as I grew up thinking that I am ugly and > having small eyes is a problem. > > As parents out there, how do you cope, raise your child to think > he/she is perfect and DOES NOT have a problem when they undergo > surgery several times? I would love to learn your experiences and > how your children grew up with confidence. How do you handle kids > teasing your child in school? > > Thanks, > Min Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Hi Shireen, Thank you very much for the helpful information. My daughter hasn't been classifide yet. her opthalmalogist is suggesting surgery as a preventive measure. Her vision is developing normally for a 6 mo baby. So, surgery at this time is not a good decision. However, my husband and I considering surgery at 3 yrs...after her face/head develops a bit more. I would love to meet anyone in California Bay Area that has BPES. Anyone out there from SF Bay Area? Would love to hear from you! Thank you again. I am so grateful for this user group and the kindness of strangers who are willing to help. Best regards, Min > > Hi Everyone, > > I recently found this group and I am thankful that there are > several > > people with BPES. My daughter (6mo) and I have BPES. My father > and > > 2 older sisters have BPES. I am Korean and it feels good to see > > that non-Asian family have this trait. > > > > I'm looking for someone who had their child go through the eyelid > > surgery...the " sling " surgery. My doctors are suggesting that my > > daughter go through with the surgery at a young age and I am not > > comfortable with it. I had my surgery at age 7 and I wished that > my > > parents didn't do that, as I grew up thinking that I am ugly and > > having small eyes is a problem. > > > > As parents out there, how do you cope, raise your child to think > > he/she is perfect and DOES NOT have a problem when they undergo > > surgery several times? I would love to learn your experiences and > > how your children grew up with confidence. How do you handle kids > > teasing your child in school? > > > > Thanks, > > Min > > > > Quote Link to comment Share on other sites More sharing options...
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