Guest guest Posted November 19, 2007 Report Share Posted November 19, 2007 To All: Everyone must make their own decision for themselves and their children. Each of us has a right to elect to have surgery or not to have surgery. It is a personal choice and there are pros and cons for each choice. All decisions that parents make for their children will affect them for the rest of their lives. All we can do is inform ourselves the best we can and make the decision that we think is best. That's it. I have no right to judge you for your decisions and you have no right to judge me for my decisions. I don't think that is the purpose of this group. So please continue to share your experiences and knowledge but stop trying to bully people into making a decision or criticising them for a decision already made. Thank you --- Colson <kureeji@...> wrote: > > My entire family is the way i am. > > Should i not be proud, to look like my family? My > eyes are my fathers, my grandmothers, my great > grandmothers, my aunts, my uncles and cousins and my > neices and nephews. > > Life is hurt and humiliation! Your children will > feel it anyway. Children will get made fun of > anyway. > > But why should i change MYSELF because other people > find it odd? If it causes me no visual impairment > (and i know that there are others like me, who > retain all of their visual capacity) then why should > i go through expensive, painful surgery, in an > effort to look like people without eyes like mine? > > Isn't that turning my back on my family? Should i > feel embarassed, or that there IS a need for > surgery? > > The problem isnt my eyes. Its that people target > those that are different than them. Changing MY eyes > wont change the way our society functions. > > > > > > blepharophimosis@...: > bethgordon03@...: Mon, 19 Nov 2007 > 17:38:20 +0000Subject: blepharophimosis Re: > Surgery? Its sickening > > > > > I have BPES and so does my dad. When my daughter I > was born I was amazed at how did I learn as a child, > with such visual impairment, it still amazes me to > this day. Anyone would wonder about the effects on > developmentTo say that it is better to go through > hurt and humiliation, but not stoop low enough to > have a surgical improvement of a medical condition, > makes no sense to me. If my daughter's teeth are > crooked I will get her braces. If she had alopecia I > would get her a wig, if she had bumps on her nose I > would get her rhinoplasty, why not? Why not take > advantage of modern medicine. What point are you > proving? A surgery takes a few hours of your life, > being teased and constantly questioned about your > looks is far worse. I don't understand why any > parent would choose that for their child... If you > haven't noticed, there are tons of people who > are " normal " , having loving homes, loving parents, > and still have low self esteem. You seem to think > loving your kid is all it takes. It's just a > start.>> > I understand > where you are coming from whole heartedly. I was > referring to surgery strictly for cosmetic purposes, > when the child is too young to be aware of whats > happening to them. > > I saw a post in another group > where a mother who was unaffected had a child with > it. She asked what development problems were > associated with the condition.> > It really shook me > to the core and scared me, about how uneducated > people are. And the possibility of people like that > who are ill informed, putting their children through > surgery, really really scared me. > > My youngest > cousin may have to go through surgery, her eyes are > smaller than mine and she has to tilt her head. Im > not judging anyone who goes through surgery to > improve their vision. At the same time, i wonder > what unaffected parents see as a vision problem? I > had to tilt my head when i was younger. People still > come up to me and ask me " Can you see? " > > I have > the same range of vision as anyone else. Most of my > family does, except my youngest cousin, being the > only one who may *need*> surgery. > > The only way a > parent will know if their child is having a vision > problem is to give it some time. All children with > it will tilt their head. They are short, and paired > with the eyes, you get the tilt. But my mother says > that as i grew taller the habit was completely > eliminated. > > I can understand how that would > scare parents, seeing their children tilt their head > like that. What else can be assumed, but that there > is a vision problem?> > > My point is the only way a > parent will know what the world looks like through > their childrens eyes is to WAIT TILL THEY CAN TELL > YOU. I understand that epiblepharon agitated the > situation and i understand that you wanted the best > for her. I understand.> > But as a person who has > blepharophimosis with no other conditions, im very > lucky that my mother didnt take me to have surgery > when i was young. Even though i tilted my head, and > my eyes may seem like i have a vision problem, i > dont. And you know what? Until this group, not one > doctor has ever given me any information about this. > Doctors dont always have the answers, they are just > people like me and you. > > Psychologically and > socially, i have no idea how different my life would > be if i had been operated on at a young age.> > > Thats where im coming from, and i didnt mean to > upset anyone...it has enriched my life to read > everyones stories.> > I put a picture of me in the > gallery if anyone wants to know what my eyes look > like. I can put up ones of me as a child as well.> > > > > blepharophimosis@...: donnat65@...: Mon, 19 > Nov 2007 00:38:09 +0000Subject: blepharophimosis > Re: Surgery? Its sickening> > > > > I can assure you > that I did not subject my 22-month-old daughter to > surgery just because I am vain. In fact, I consulted > 2 pediatric ophthalmologists before I decided to go > through with it. If your vision isn't affected by > your condition, you are very lucky. My daughter, on > the other hand, was barely able to see at all. She > had to tilt her head so far back in order to see > that the doctors worried that she would have > life-long problems with her neck if we waited any > longer. Plus, she had congenital epiblepharon (her > bottom lashes rolled in and rubbed against her > eyes). The constant rubbing was starting to cause > scaring on her eyes. Because the surgery was > preformed by an ophthalmic plastic surgeon my > insurance company wouldn't agree to pay for it > unless it was determined to be " medically > necessary " . It was. Personally, I loved my > daughter's " little eyes " . See, she was adopted at 19 > months old, and I feel in love with the pictures of > those little eyes even before I met the child. I > actually made it a point to take her in and have > professional portraits done before the surgery so > that we would always be able to see the beautiful > face she was born with. If the surgery was purely > cosmetic, it would never have happened. My daughter > had surgery to save her sight, not because I was > embarrassed or uncomfortable with her looks. She > was, is, and always will be absolutely beautiful.And > surgery or not, my daughter still has > blepharophimosis. Surgery can help her vision, but > it is never going to change her chromosomes. Donna > > > > > > > > > __________________________________________________________> > Connect and share in new ways with Windows Live.> > http://www.windowslive.com/connect.html?ocid=TXT_TAGLM_Wave2_newways_112007> > > > > > > > > _________________________________________________________________ > Put your friends on the big screen with Windows > Vista® + Windows Live™. > http://www.microsoft.com/windows/shop/specialoffers.mspx?ocid=TXT_TAGLM_CPC_Medi\ aCtr_bigscreen_102007 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.