Re: BPES is not the end of world

[Guest guest]

laughing so hard ....do you live in my house ? I agree with you so much....I also understand people have worries just like I had. They may seem focused on BLEPH on here and not so much in their lives..know what I mean ? They truly may come accross as worried here just grasping for more information but may not truly portray that to their child. ...I have 3 kids with BPES and my worries are more for my 11 month old daughter being able to have children of her own..but again too early to worry about that now. Good Luck to all...Its been hard to respond to posts lately as life is NUTS! foxl1010 <foxl1010@...> wrote: BPES is not the end of world there's so many other illnesses a child can have consider it a blessing. I'm no stranger to BPES I have a cast of family members and children with

BPES and I am so grateful none of my children had cancer, or any other life threatening illness. I've lived with BPES for 45 years; all my children have it and its NO BIG DEAL.Every child is different some learn faster some slower I hated math could not grasp fractions to save my life but I was in the 5th grade reading on a 12th grade level.Were all different and I have enjoyed being different, my children enjoy being differentYes we were all called names and picked on and what child isn't.Please parents stop worrying about the children and be there strong advocate, I've said it before and I'll say it again your only strong as your weakest link, if you spend your days and nights feeling pity and depressed about your Childs eyes he or she will too.I have Never, Never, Ever made my children's eyes an issue, they had surgery and that was it. Wear your glasses do your home work; clean your room, no

parties, and no girls, that's my focus.If this is your first child with BPES and he or she has siblings you can do a lot of harm by focusing on this child, he or she will feel different alienated, "why am I different".You will soon find children with BPES are driven perfectionist, very intelligent,If you just let them be kids and grow without the stigma of BPES you will see they are no different then any other kidsI have teens and crazy phone bills, and hormones, people wanting driver's licensesI need to have a talk about sex, I'm not the bank, its 11 o clock where are you.If you think BPES is the end of the world lets swap for the summer I'll give you 4 teenagers with BPES and I'll take your one, in about an 10 minutes you will find BPES is not your problem the lack of food is.My kids are good kids I have never had any problems with them, there nerds, 2 excel in school 2 are b-c students. BPES has

never been an issue .Relax and take a breath and enjoy the early years, you only get one shot at this .If you ever need any information or just want to talk email me foxl202@...<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

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[Guest guest]

wow I think you just summed up my life too.... and I don't have a teenager yet...my son will be 9, but.... we deal with the everyday stuff too, I have a son and a daughter they both eat me out of house and home, CONSTANTLY test me, mom can I have this, that, and everything??????? my 9 year old tells me he knows what sex is................oh my god WHAT?????? BPES is actually the least we focus on in our life, I was 19 years old when he was diagnosed and had no clue, I was scared and worried especially when my son had his first surgery at 5 weeks old.....I was very very very fortunate to find some doctors who are deemed experts in the knowledge of BPES. I work as a nurse (maternity nurse) in the hospital and see babies born everyday with many various problems and syndromes, I am also having my 3rd (9 more weeks) and what am I worried about?? not BPES cause I can handle that, but am worried about cleft palate, maybe heart defects maybe down syndrome, all those things that typical parents worry about..... unfortunately because I see babies born everyday I know what's out there. I f this child is born with BPES I would actually be grateful that that's all there was.

I read these posts daily, only sometimes comment but was really unhappy to see people fighting over things that are so petty. like who is madder than who....I met a family that has a daughter who has BPES, this family met our doctor (whom pretty much everyone in Canada goes to) anyway they saw pictures plus met my son and a few other people here that has had surgery by him, they were not satisfied they blatantly said they wanted perfection, they paid thousands and thousands for surgery(here in Alberta its covered by healthcare) they went to china for an experimental surgery, were they satisfied? nope their daughter looks the same as most with BPES cute as a button if you ask me, (she is 6) but to them she "looked different still" now this poor little girl is so self conscious because her parents do not think she is perfect..... I mean what is perfection now a days really?? god I have a really big butt and was dyslexic my whole life, but im ok with that cause it was not an issue growing up.... I know that some people are scared especially like what was said before if this is your first child and do not have the greatest doctors well as rob says change doctors if possible, get ALL of your questions answered by professionals, as also was said before most of us parents probably know more than the darn doctors out there about BPES ..... that is why it is so important to listen to others experiences and advice, I agree with the email from foxl1010 (sorry did not catch your name) life is sooooooooooooooooooooooooooooooooooooooooooooooooooooo short and my goal in life is to enjoy my children for who they are, "small eyes", big eyes, left handed, right handed. I want I want I want, what was that??? I want more??? mom this mom that..... if I have real questions about my children's well being and health I am going to go to my doctor, if I am not satisfied, I will find another doctor, as for this site for BPES, I like to hear who is going thru what and when surgeries are, look at the updated pictures etc....... everyone here lives in a different city, state, province, or country to me its vital that people realize that all doctors are different , people have varying degrees of BPES, with various different treatments or surgeries and that ALL people are different. NO ONE IS PERFECT NOR SHOULD THEY HAVE TO BE....... enjoy your child to their fullest, you only get one chance

Tonikka and Chris

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of foxl1010Sent: May 19, 2006 10:20 PMblepharophimosis Subject: blepharophimosis BPES is not the end of worldBPES is not the end of world there's so many other illnesses a child can have consider it a blessing. I'm no stranger to BPES I have a cast of family members and children with BPES and I am so grateful none of my children had cancer, or any other life threatening illness. I've lived with BPES for 45 years; all my children have it and its NO BIG DEAL.Every child is different some learn faster some slower I hated math could not grasp fractions to save my life but I was in the 5th grade reading on a 12th grade level.Were all different and I have enjoyed being different, my children enjoy being differentYes we were all called names and picked on and what child isn't.Please parents stop worrying about the children and be there strong advocate, I've said it before and I'll say it again your only strong as your weakest link, if you spend your days and nights feeling pity and depressed about your Childs eyes he or she will too.I have Never, Never, Ever made my children's eyes an issue, they had surgery and that was it. Wear your glasses do your home work; clean your room, no parties, and no girls, that's my focus.If this is your first child with BPES and he or she has siblings you can do a lot of harm by focusing on this child, he or she will feel different alienated, "why am I different".You will soon find children with BPES are driven perfectionist, very intelligent,If you just let them be kids and grow without the stigma of BPES you will see they are no different then any other kidsI have teens and crazy phone bills, and hormones, people wanting driver's licensesI need to have a talk about sex, I'm not the bank, its 11 o clock where are you.If you think BPES is the end of the world lets swap for the summer I'll give you 4 teenagers with BPES and I'll take your one, in about an 10 minutes you will find BPES is not your problem the lack of food is.My kids are good kids I have never had any problems with them, there nerds, 2 excel in school 2 are b-c students. BPES has never been an issue .Relax and take a breath and enjoy the early years, you only get one shot at this .If you ever need any information or just want to talk email me foxl202@...

[Guest guest]

LOL... Thanks for the laughs it's good to hear someone knows there are much bigger fish to fry then BPES. I enjoyed my child hood my parents rarely made a big deal about my eyes and that gave me confidence knowing it was cool with them. Every now and then my mom would but eventually she gave up I guess I have to care for it to be important, I didn’t Your right were all different a little bigger or smaller might be a big deal to some people so to each there own. Let me tell you about my surgery god it was horrible I

was one of the first behind my brothers So the doctors got a little practice lucky me ha. I had long sutures across my eye brow large knots where the sutures were tied Dr enstein could have done better. lol I mean bad I got great lift but the scars were just horrid, wait to top it off we had to wear bandages over our eyes for 2 weeks in the hospital. Now when my grandparents came to visit they gave us toys, hot wheels cars and all the good stuff and every time the doctors came to examine my eyes I noticed I was minus a few toys at the end of the 2 weeks I was lucky to have a pillow. Today there in and out great surgeons no real scaring I’m impressed, I like to think the surgeons that did our surgery sat in the locker room and said “man we really did a horrible job on

those kids we better get better at this.” Well that was my contribution to BPES and it was worth it, to see such wonderful work the doctors are doing on BPES children makes it all worth wild. enjoy life and your children Ron __________________________________________________

[Guest guest]

HURRAY!!!!! WELL SAID, I totally totally agree.... BPES has never been an issue in my life, nor my daughters (she has BPES), there are days when she says she doesnt like to be different - however there are also days when my son (he doesnt have BPES) says he has had enough of the boy in his class picking on him because he cant swim.... The 15 year old - well im lucky if he talks at all at the moment!!! Please count your blessings, dont get hung up on BPES as kids pick up on negativity and that is worse (in my books) than having small eyes!!!!! Lets empower our kids, give confidence and stability, lets make this generation more knowledgable about these 'differences' than we ever were. For those parents dealing with this for the first time, I have BPES and am a mother of 3, 1 has BPES, am a wife, I am a personal

development trainer (I train people that have learned how to be negative from birth and change their way of thinking), and I take every opportunity life throws at me with open arms - and if this is the stuff we are teaching are kids - excellent. Clare Teale Herts UKfoxl1010 <foxl1010@...> wrote: BPES is not the end of world there's so many other illnesses a child can have consider it a blessing. I'm no stranger to BPES I have a cast of family members and children with BPES and I am so grateful none of my children had cancer, or any other life threatening illness. I've lived with BPES for 45 years; all my children have it and its NO BIG DEAL.Every child is different some learn faster some slower I hated math could not grasp fractions to save my

life but I was in the 5th grade reading on a 12th grade level.Were all different and I have enjoyed being different, my children enjoy being differentYes we were all called names and picked on and what child isn't.Please parents stop worrying about the children and be there strong advocate, I've said it before and I'll say it again your only strong as your weakest link, if you spend your days and nights feeling pity and depressed about your Childs eyes he or she will too.I have Never, Never, Ever made my children's eyes an issue, they had surgery and that was it. Wear your glasses do your home work; clean your room, no parties, and no girls, that's my focus.If this is your first child with BPES and he or she has siblings you can do a lot of harm by focusing on this child, he or she will feel different alienated, "why am I different".You will soon find children with BPES are driven perfectionist, very

intelligent,If you just let them be kids and grow without the stigma of BPES you will see they are no different then any other kidsI have teens and crazy phone bills, and hormones, people wanting driver's licensesI need to have a talk about sex, I'm not the bank, its 11 o clock where are you.If you think BPES is the end of the world lets swap for the summer I'll give you 4 teenagers with BPES and I'll take your one, in about an 10 minutes you will find BPES is not your problem the lack of food is.My kids are good kids I have never had any problems with them, there nerds, 2 excel in school 2 are b-c students. BPES has never been an issue .Relax and take a breath and enjoy the early years, you only get one shot at this .If you ever need any information or just want to talk email me foxl202@...

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[Guest guest]

Ha - you want surgery horror stories?? hows this? at 18months old,

with BPES, the surgery was done on both eyes, then blindfolded with

bandages, & arms tied to the side of the cot (so`s the bandages

weren`t ripped off & stitches ripped out!!) babe is left to

`recuperate`!!! Then, the poor parents decided it would be best to

NOT visit the child (yes, in those days you stayed in hospital for

weeks, not hours, & mothers did not get to stay over), as leaving

after a visit seemed to upset the child too much!! (I wonder why??)

Yes, parents & child are fully reconciled & love each other very much.

Just don`t try to tie me up!!!!!!

Keep smiling everyone...........

Maree

>

> LOL...

>

> Thanks for the laughs it's good to hear someone knows there are

much bigger fish to fry then BPES. I enjoyed my child hood my parents

rarely made a big deal about my eyes and that gave me confidence

knowing it was cool with them. Every now and then my mom would but

eventually she gave up I guess I have to care for it to be important,

I didn't

> Your right were all different a little bigger or smaller might be

a big deal to some people so to each there own.

> Let me tell you about my surgery god it was horrible I was one of

the first behind my brothers

> So the doctors got a little practice lucky me ha. I had long

sutures across my eye brow large knots where the sutures were tied Dr

enstein could have done better. lol I mean bad I got great lift

but the scars were just horrid, wait to top it off we had to wear

bandages over our eyes for 2 weeks in the hospital. Now when my

grandparents came to visit they gave us toys, hot wheels cars and all

the good stuff and every time the doctors came to examine my eyes I

noticed I was minus a few toys at the end of the 2 weeks I was lucky

to have a pillow.

> Today there in and out great surgeons no real scaring I'm

impressed, I like to think the surgeons that did our surgery sat in

the locker room and said " man we really did a horrible job on those

kids we better get better at this. "

> Well that was my contribution to BPES and it was worth it, to see

such wonderful work the doctors are doing on BPES children makes it

all worth wild.

>

> enjoy life and your children

>

Ron

>

>

>

> __________________________________________________

>