Guest guest Posted October 2, 2005 Report Share Posted October 2, 2005 Hi All That poam has been out for a long time,it was first given to me when I found out my son Bradley had special needs(hes 10 now) and it has always stuck with me and its very true,people will always 'brag' about their 'perfect' child but I was choosen to have my 'Perfect' children too and I can 'Brag' as good as the next person (if not better) Thanks for sending it.was nice to hear it again. leah Forsyth <leahs_male@...> wrote: This was sent to me by Sari, who also belongs to the group.. Id just like to share cos i thought it was pretty neat. Thanks Sari I am often asked to describe the experience of raising a child with adisability - to try to help people who have not shared that uniqueexperience to understand it, to imagine how it would feel. It's likethis......When you're going to have a baby, it's like planning a fabulous vacationtrip - to Italy. You buy a bunch of guide books and make your wonderfulplans. The Coliseum. The Michelangelo . The gondolas in Venice. Youmay learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You packyour bags and off you go. Several hours later, the plane lands. Thestewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!I'm supposed to be in Italy. All my life I've dreamed of going toItaly."But there's been a change in the flight plan. They've landed in Hollandand there you must stay.The important thing is that they haven't taken you to a horrible,disgusting, filthy place, full of pestilence, famine and disease. It'sjust a different place.So you must go out and buy new guide books. And you must learn a wholenew language. And you will meet a whole new group of people you wouldnever have met.It's just a different place. It's slower-paced than Italy, less flashythan Italy. But after you've been there for a while and you catch yourbreath, you look around.... and you begin to notice that Holland haswindmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they'reall bragging about what a wonderful time they had there. And for therest of your life, you will say "Yes, that's where I was supposed to go.That's what I had planned." And the pain of that will never, ever, ever, ever go away... because theloss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovelythings ... about Holland. Messenger NEW - crystal clear PC to PC calling worldwide with voicemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2005 Report Share Posted October 2, 2005 Hi all, I just read this email and had a couple of reactions. Please understand that these are just my opinions. I like the concept of Italy vs. Holland. We have 2 kids, one with BPES and one without. Both have been entirely different than we would have ever imagined, somewhat like a fantasy vacation that is a little different than we'd planned. HOWEVER, BPES is not a disability. Anyone who tells you it is doesn't understand what constitutes a disability. My sister is disabled - profoundly. She is in her mid-30s and has the intellectual capacity of a 3 year old. She cannot remain potty trained with any consistency. She is confined to a wheel chair. She is disabled. My husband has BPES. When I met him I noticed there was something a little funny about his eye, and didn't think anything else about it. Most people don't even notice anything at all (I was just looking closely because I thought he was cute). His BPES is one rather insignificant element of who he is. He is the most wonderful, kind, caring, brilliant man I know. I wouldn't change a thing. Our son also has BPES. This means that he sees a doctor for his eyes more freqently than other children, and will need surgery at least once. Some people say " oh he's sleepy. " However, there is much more to him than his BPES. If anyone tells you your child is " disabled " because of BPES, they are really off base. There is a cosmetic issue with your child's eyes that may also include some vision issues, but it is not a disability. Please don't underestimate your child because of BPES. Thanks, --- leah Forsyth <leahs_male@...> wrote: > This was sent to me by Sari, who also belongs to the > group.. Id just like to share cos i thought it was > pretty neat. Thanks Sari > > > I am often asked to describe the experience of > raising a child with a > disability - to try to help people who have not > shared that unique > experience to understand it, to imagine how it would > feel. It's like > this...... > > When you're going to have a baby, it's like planning > a fabulous vacation > trip - to Italy. You buy a bunch of guide books and > make your wonderful > plans. The Coliseum. The Michelangelo . The > gondolas in Venice. You > may learn some handy phrases in Italian. It's all > very exciting. > > After months of eager anticipation, the day finally > arrives. You pack > your bags and off you go. Several hours later, the > plane lands. The > stewardess comes in and says, " Welcome to Holland. " > > " Holland?!? " you say. " What do you mean Holland?? I > signed up for Italy! > I'm supposed to be in Italy. All my life I've > dreamed of going to > Italy. " > > But there's been a change in the flight plan. > They've landed in Holland > and there you must stay. > > The important thing is that they haven't taken you > to a horrible, > disgusting, filthy place, full of pestilence, famine > and disease. It's > just a different place. > So you must go out and buy new guide books. And you > must learn a whole > new language. And you will meet a whole new group of > people you would > never have met. > It's just a different place. It's slower-paced than > Italy, less flashy > than Italy. But after you've been there for a while > and you catch your > breath, you look around.... and you begin to notice > that Holland has > windmills....and Holland has tulips. Holland even > has Rembrandts. > > But everyone you know is busy coming and going from > Italy... and they're > all bragging about what a wonderful time they had > there. And for the > rest of your life, you will say " Yes, that's where I > was supposed to go. > That's what I had planned. " > > And the pain of that will never, ever, ever, ever go > away... because the > loss of that dream is a very very significant loss. > > But... if you spend your life mourning the fact that > you didn't get to > Italy, you may never be free to enjoy the very > special, the very lovely > things ... about Holland. > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Hi there:) I agree with , when I read that, which is very beautiful I might add! I don't associate my child with a disbility because he has bleph! he is a perfectly normal, healthy 2 1/2 year old boy, he is not restricted in ANY way at all by having bleph, it is just cosmetic surgery in the end, although some cases may vary a lot and have different degrees of severity, I would never label bpes as a disability....nothing slows our Ethan down:) Leanne. -- Re: blepharophimosis a parents perspective Hi all, I just read this email and had a couple of reactions. Please understand that these are just my opinions. I like the concept of Italy vs. Holland. We have 2 kids, one with BPES and one without. Both have been entirely different than we would have ever imagined, somewhat like a fantasy vacation that is a little different than we'd planned. HOWEVER, BPES is not a disability. Anyone who tells you it is doesn't understand what constitutes a disability. My sister is disabled - profoundly. She is in her mid-30s and has the intellectual capacity of a 3 year old. She cannot remain potty trained with any consistency. She is confined to a wheel chair. She is disabled. My husband has BPES. When I met him I noticed there was something a little funny about his eye, and didn't think anything else about it. Most people don't even notice anything at all (I was just looking closely because I thought he was cute). His BPES is one rather insignificant element of who he is. He is the most wonderful, kind, caring, brilliant man I know. I wouldn't change a thing. Our son also has BPES. This means that he sees a doctor for his eyes more freqently than other children, and will need surgery at least once. Some people say "oh he's sleepy." However, there is much more to him than his BPES. If anyone tells you your child is "disabled" because of BPES, they are really off base. There is a cosmetic issue with your child's eyes that may also include some vision issues, but it is not a disability. Please don't underestimate your child because of BPES. Thanks, --- leah Forsyth <leahs_male@...> wrote: > This was sent to me by Sari, who also belongs to the > group.. Id just like to share cos i thought it was > pretty neat. Thanks Sari > > > I am often asked to describe the experience of > raising a child with a > disability - to try to help people who have not > shared that unique > experience to understand it, to imagine how it would > feel. It's like > this...... > > When you're going to have a baby, it's like planning > a fabulous vacation > trip - to Italy. You buy a bunch of guide books and > make your wonderful > plans. The Coliseum. The Michelangelo . The > gondolas in Venice. You > may learn some handy phrases in Italian. It's all > very exciting. > > After months of eager anticipation, the day finally > arrives. You pack > your bags and off you go. Several hours later, the > plane lands. The > stewardess comes in and says, "Welcome to Holland." > > "Holland?!?" you say. "What do you mean Holland?? I > signed up for Italy! > I'm supposed to be in Italy. All my life I've > dreamed of going to > Italy." > > But there's been a change in the flight plan. > They've landed in Holland > and there you must stay. > > The important thing is that they haven't taken you > to a horrible, > disgusting, filthy place, full of pestilence, famine > and disease. It's > just a different place. > So you must go out and buy new guide books. And you > must learn a whole > new language. And you will meet a whole new group of > people you would > never have met. > It's just a different place. It's slower-paced than > Italy, less flashy > than Italy. But after you've been there for a while > and you catch your > breath, you look around.... and you begin to notice > that Holland has > windmills....and Holland has tulips. Holland even > has Rembrandts. > > But everyone you know is busy coming and going from > Italy... and they're > all bragging about what a wonderful time they had > there. And for the > rest of your life, you will say "Yes, that's where I > was supposed to go. > That's what I had planned." > > And the pain of that will never, ever, ever, ever go > away... because the > loss of that dream is a very very significant loss. > > But... if you spend your life mourning the fact that > you didn't get to > Italy, you may never be free to enjoy the very > special, the very lovely > things ... about Holland. > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Yes that is one side of the argument,but I also believe their are different levels of disability. How <reneehow@...> wrote: Hi all,I just read this email and had a couple of reactions.Please understand that these are just my opinions.I like the concept of Italy vs. Holland. We have 2kids, one with BPES and one without. Both have beenentirely different than we would have ever imagined,somewhat like a fantasy vacation that is a littledifferent than we'd planned. HOWEVER, BPES is not a disability. Anyone who tellsyou it is doesn't understand what constitutes adisability. My sister is disabled - profoundly. She isin her mid-30s and has the intellectual capacity of a3 year old. She cannot remain potty trained with anyconsistency. She is confined to a wheel chair. She isdisabled.My husband has BPES. When I met him I noticed therewas something a little funny about his eye, and didn'tthink anything else about it. Most people don't evennotice anything at all (I was just looking closelybecause I thought he was cute). His BPES is one ratherinsignificant element of who he is. He is the mostwonderful, kind, caring, brilliant man I know. Iwouldn't change a thing.Our son also has BPES. This means that he sees adoctor for his eyes more freqently than otherchildren, and will need surgery at least once. Somepeople say "oh he's sleepy." However, there is muchmore to him than his BPES.If anyone tells you your child is "disabled" becauseof BPES, they are really off base. There is a cosmeticissue with your child's eyes that may also includesome vision issues, but it is not a disability. Pleasedon't underestimate your child because of BPES.Thanks,--- leah Forsyth <leahs_male@...> wrote:> This was sent to me by Sari, who also belongs to the> group.. Id just like to share cos i thought it was> pretty neat. Thanks Sari> > > I am often asked to describe the experience of> raising a child with a> disability - to try to help people who have not> shared that unique> experience to understand it, to imagine how it would> feel. It's like> this......> > When you're going to have a baby, it's like planning> a fabulous vacation> trip - to Italy. You buy a bunch of guide books and> make your wonderful> plans. The Coliseum. The Michelangelo . The> gondolas in Venice. You> may learn some handy phrases in Italian. It's all> very exciting.> > After months of eager anticipation, the day finally> arrives. You pack> your bags and off you go. Several hours later, the> plane lands. The> stewardess comes in and says, "Welcome to Holland."> > "Holland?!?" you say. "What do you mean Holland?? I> signed up for Italy!> I'm supposed to be in Italy. All my life I've> dreamed of going to> Italy."> > But there's been a change in the flight plan.> They've landed in Holland> and there you must stay.> > The important thing is that they haven't taken you> to a horrible,> disgusting, filthy place, full of pestilence, famine> and disease. It's> just a different place.> So you must go out and buy new guide books. And you> must learn a whole> new language. And you will meet a whole new group of> people you would> never have met.> It's just a different place. It's slower-paced than> Italy, less flashy> than Italy. But after you've been there for a while> and you catch your> breath, you look around.... and you begin to notice> that Holland has> windmills....and Holland has tulips. Holland even> has Rembrandts.> > But everyone you know is busy coming and going from> Italy... and they're> all bragging about what a wonderful time they had> there. And for the> rest of your life, you will say "Yes, that's where I> was supposed to go.> That's what I had planned." > > And the pain of that will never, ever, ever, ever go> away... because the> loss of that dream is a very very significant loss.> > But... if you spend your life mourning the fact that> you didn't get to > Italy, you may never be free to enjoy the very> special, the very lovely> things ... about Holland.> > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Hi has only central vision (which I understand is like looking through binoculars) this makes it difficult for her unless she constantly moves her head about.I not saying all BPES children should be put in cotton wool and labelled disabled,I know from my experiance she just needs a little more help and understanding from the people she comes into contact with.To me she is perfect disabled or not I love her for whom she is and the very cheeky/naughty side she seems to be devolping. costellos <tltne@...> wrote: Hi there:) I agree with , when I read that, which is very beautiful I might add! I don't associate my child with a disbility because he has bleph! he is a perfectly normal, healthy 2 1/2 year old boy, he is not restricted in ANY way at all by having bleph, it is just cosmetic surgery in the end, although some cases may vary a lot and have different degrees of severity, I would never label bpes as a disability....nothing slows our Ethan down:) Leanne. -- Re: blepharophimosis a parents perspective Hi all, I just read this email and had a couple of reactions. Please understand that these are just my opinions. I like the concept of Italy vs. Holland. We have 2 kids, one with BPES and one without. Both have been entirely different than we would have ever imagined, somewhat like a fantasy vacation that is a little different than we'd planned. HOWEVER, BPES is not a disability. Anyone who tells you it is doesn't understand what constitutes a disability. My sister is disabled - profoundly. She is in her mid-30s and has the intellectual capacity of a 3 year old. She cannot remain potty trained with any consistency. She is confined to a wheel chair. She is disabled. My husband has BPES. When I met him I noticed there was something a little funny about his eye, and didn't think anything else about it. Most people don't even notice anything at all (I was just looking closely because I thought he was cute). His BPES is one rather insignificant element of who he is. He is the most wonderful, kind, caring, brilliant man I know. I wouldn't change a thing. Our son also has BPES. This means that he sees a doctor for his eyes more freqently than other children, and will need surgery at least once. Some people say "oh he's sleepy." However, there is much more to him than his BPES. If anyone tells you your child is "disabled" because of BPES, they are really off base. There is a cosmetic issue with your child's eyes that may also include some vision issues, but it is not a disability. Please don't underestimate your child because of BPES. Thanks, --- leah Forsyth <leahs_male@...> wrote: > This was sent to me by Sari, who also belongs to the > group.. Id just like to share cos i thought it was > pretty neat. Thanks Sari > > > I am often asked to describe the experience of > raising a child with a > disability - to try to help people who have not > shared that unique > experience to understand it, to imagine how it would > feel. It's like > this...... > > When you're going to have a baby, it's like planning > a fabulous vacation > trip - to Italy. You buy a bunch of guide books and > make your wonderful > plans. The Coliseum. The Michelangelo . The > gondolas in Venice. You > may learn some handy phrases in Italian. It's all > very exciting. > > After months of eager anticipation, the day finally > arrives. You pack > your bags and off you go. Several hours later, the > plane lands. The > stewardess comes in and says, "Welcome to Holland." > > "Holland?!?" you say. "What do you mean Holland?? I > signed up for Italy! > I'm supposed to be in Italy. All my life I've > dreamed of going to > Italy." > > But there's been a change in the flight plan. > They've landed in Holland > and there you must stay. > > The important thing is that they haven't taken you > to a horrible, > disgusting, filthy place, full of pestilence, famine > and disease. It's > just a different place. > So you must go out and buy new guide books. And you > must learn a whole > new language. And you will meet a whole new group of > people you would > never have met. > It's just a different place. It's slower-paced than > Italy, less flashy > than Italy. But after you've been there for a while > and you catch your > breath, you look around.... and you begin to notice > that Holland has > windmills....and Holland has tulips. Holland even > has Rembrandts. > > But everyone you know is busy coming and going from > Italy... and they're > all bragging about what a wonderful time they had > there. And for the > rest of your life, you will say "Yes, that's where I > was supposed to go. > That's what I had planned." > > And the pain of that will never, ever, ever, ever go > away... because the > loss of that dream is a very very significant loss. > > But... if you spend your life mourning the fact that > you didn't get to > Italy, you may never be free to enjoy the very > special, the very lovely > things ... about Holland. > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 How ~ I loved your letter. My Husband, daughter and father in law all have BPES. I agree with you there is nothing different in them except maybe looks slightly. My daughter is only 10 weeks old and people always make comments thinking she is sleepy. I guess that is probably the normal reaction with BPES babies. At first it irratated me but I've gotten used to it. Good luck with your little one. ~ DeMartile How <reneehow@...> wrote: Hi all,I just read this email and had a couple of reactions.Please understand that these are just my opinions.I like the concept of Italy vs. Holland. We have 2kids, one with BPES and one without. Both have beenentirely different than we would have ever imagined,somewhat like a fantasy vacation that is a littledifferent than we'd planned. HOWEVER, BPES is not a disability. Anyone who tellsyou it is doesn't understand what constitutes adisability. My sister is disabled - profoundly. She isin her mid-30s and has the intellectual capacity of a3 year old. She cannot remain potty trained with anyconsistency. She is confined to a wheel chair. She isdisabled.My husband has BPES. When I met him I noticed therewas something a little funny about his eye, and didn'tthink anything else about it. Most people don't evennotice anything at all (I was just looking closelybecause I thought he was cute). His BPES is one ratherinsignificant element of who he is. He is the mostwonderful, kind, caring, brilliant man I know. Iwouldn't change a thing.Our son also has BPES. This means that he sees adoctor for his eyes more freqently than otherchildren, and will need surgery at least once. Somepeople say "oh he's sleepy." However, there is muchmore to him than his BPES.If anyone tells you your child is "disabled" becauseof BPES, they are really off base. There is a cosmeticissue with your child's eyes that may also includesome vision issues, but it is not a disability. Pleasedon't underestimate your child because of BPES.Thanks,--- leah Forsyth <leahs_male@...> wrote:> This was sent to me by Sari, who also belongs to the> group.. Id just like to share cos i thought it was> pretty neat. Thanks Sari> > > I am often asked to describe the experience of> raising a child with a> disability - to try to help people who have not> shared that unique> experience to understand it, to imagine how it would> feel. It's like> this......> > When you're going to have a baby, it's like planning> a fabulous vacation> trip - to Italy. You buy a bunch of guide books and> make your wonderful> plans. The Coliseum. The Michelangelo . The> gondolas in Venice. You> may learn some handy phrases in Italian. It's all> very exciting.> > After months of eager anticipation, the day finally> arrives. You pack> your bags and off you go. Several hours later, the> plane lands. The> stewardess comes in and says, "Welcome to Holland."> > "Holland?!?" you say. "What do you mean Holland?? I> signed up for Italy!> I'm supposed to be in Italy. All my life I've> dreamed of going to> Italy."> > But there's been a change in the flight plan.> They've landed in Holland> and there you must stay.> > The important thing is that they haven't taken you> to a horrible,> disgusting, filthy place, full of pestilence, famine> and disease. It's> just a different place.> So you must go out and buy new guide books. And you> must learn a whole> new language. And you will meet a whole new group of> people you would> never have met.> It's just a different place. It's slower-paced than> Italy, less flashy> than Italy. But after you've been there for a while> and you catch your> breath, you look around.... and you begin to notice> that Holland has> windmills....and Holland has tulips. Holland even> has Rembrandts.> > But everyone you know is busy coming and going from> Italy... and they're> all bragging about what a wonderful time they had> there. And for the> rest of your life, you will say "Yes, that's where I> was supposed to go.> That's what I had planned." > > And the pain of that will never, ever, ever, ever go> away... because the> loss of that dream is a very very significant loss.> > But... if you spend your life mourning the fact that> you didn't get to > Italy, you may never be free to enjoy the very> special, the very lovely> things ... about Holland.> > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Hey All ~ I don't know the peom bugged me a bit in this situation. So people with BPES look a lil different then the rest of us and they have to have surgery. Yes I would have rather my daughter not have been born with BPES but she was and she is still beautiful, healthy, and NORMAL. It isn't a dissability! People with this are the same as the rest of us. I am happy for my daughter just the way she is because she is what God intended for me and she looks just like the man I love. It's allmost like being upset because your child has green eyes and you wanted it to have blue. There are just not as many people with BPES that there are with green eyes. That kind of attitude is like you feel as though you have been short changed and that is wrong. You have actually been blessed with a wonderful gift. ~ DeMartileleah Forsyth <leahs_male@...> wrote: This was sent to me by Sari, who also belongs to the group.. Id just like to share cos i thought it was pretty neat. Thanks Sari I am often asked to describe the experience of raising a child with adisability - to try to help people who have not shared that uniqueexperience to understand it, to imagine how it would feel. It's likethis......When you're going to have a baby, it's like planning a fabulous vacationtrip - to Italy. You buy a bunch of guide books and make your wonderfulplans. The Coliseum. The Michelangelo . The gondolas in Venice. Youmay learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You packyour bags and off you go. Several hours later, the plane lands. Thestewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!I'm supposed to be in Italy. All my life I've dreamed of going toItaly."But there's been a change in the flight plan. They've landed in Hollandand there you must stay.The important thing is that they haven't taken you to a horrible,disgusting, filthy place, full of pestilence, famine and disease. It'sjust a different place.So you must go out and buy new guide books. And you must learn a wholenew language. And you will meet a whole new group of people you wouldnever have met.It's just a different place. It's slower-paced than Italy, less flashythan Italy. But after you've been there for a while and you catch yourbreath, you look around.... and you begin to notice that Holland haswindmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they'reall bragging about what a wonderful time they had there. And for therest of your life, you will say "Yes, that's where I was supposed to go.That's what I had planned." And the pain of that will never, ever, ever, ever go away... because theloss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovelythings ... about Holland. for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Hi , Thanks for you orpinion. In your case bpes may not be seen as a disability but in my Ethans case i see it as a mild disability.. My nephew was born with cerebal palsy, is totally deaf and suffers from anaphalactic reactions, i also see that as a major disability but the fact that my son has the low muscle tone etc that means he is still in nappies at 6 is a disabilty also. It sure fitted my thinking along the lines as i hoped this, my last child would be reaching all his normal milestones at appropriate times etc.. I didnt have wonderful visions of still changing nappies at 6 years old. However i do see his wonderful qualities and i wouldnt change him for the world. I didnt mean to be in any way offensive by sending this on ... it just hit the nail on the head with me thats all..tho it obviously didnt do a lot for others. Re: blepharophimosis a parents perspective > Hi all, > > I just read this email and had a couple of reactions. > Please understand that these are just my opinions. > > I like the concept of Italy vs. Holland. We have 2 > kids, one with BPES and one without. Both have been > entirely different than we would have ever imagined, > somewhat like a fantasy vacation that is a little > different than we'd planned. > > HOWEVER, BPES is not a disability. Anyone who tells > you it is doesn't understand what constitutes a > disability. My sister is disabled - profoundly. She is > in her mid-30s and has the intellectual capacity of a > 3 year old. She cannot remain potty trained with any > consistency. She is confined to a wheel chair. She is > disabled. > > My husband has BPES. When I met him I noticed there > was something a little funny about his eye, and didn't > think anything else about it. Most people don't even > notice anything at all (I was just looking closely > because I thought he was cute). His BPES is one rather > insignificant element of who he is. He is the most > wonderful, kind, caring, brilliant man I know. I > wouldn't change a thing. > > Our son also has BPES. This means that he sees a > doctor for his eyes more freqently than other > children, and will need surgery at least once. Some > people say " oh he's sleepy. " However, there is much > more to him than his BPES. > > If anyone tells you your child is " disabled " because > of BPES, they are really off base. There is a cosmetic > issue with your child's eyes that may also include > some vision issues, but it is not a disability. Please > don't underestimate your child because of BPES. > > Thanks, > > > > > --- leah Forsyth <leahs_male@...> wrote: > > > This was sent to me by Sari, who also belongs to the > > group.. Id just like to share cos i thought it was > > pretty neat. Thanks Sari > > > > > > I am often asked to describe the experience of > > raising a child with a > > disability - to try to help people who have not > > shared that unique > > experience to understand it, to imagine how it would > > feel. It's like > > this...... > > > > When you're going to have a baby, it's like planning > > a fabulous vacation > > trip - to Italy. You buy a bunch of guide books and > > make your wonderful > > plans. The Coliseum. The Michelangelo . The > > gondolas in Venice. You > > may learn some handy phrases in Italian. It's all > > very exciting. > > > > After months of eager anticipation, the day finally > > arrives. You pack > > your bags and off you go. Several hours later, the > > plane lands. The > > stewardess comes in and says, " Welcome to Holland. " > > > > " Holland?!? " you say. " What do you mean Holland?? I > > signed up for Italy! > > I'm supposed to be in Italy. All my life I've > > dreamed of going to > > Italy. " > > > > But there's been a change in the flight plan. > > They've landed in Holland > > and there you must stay. > > > > The important thing is that they haven't taken you > > to a horrible, > > disgusting, filthy place, full of pestilence, famine > > and disease. It's > > just a different place. > > So you must go out and buy new guide books. And you > > must learn a whole > > new language. And you will meet a whole new group of > > people you would > > never have met. > > It's just a different place. It's slower-paced than > > Italy, less flashy > > than Italy. But after you've been there for a while > > and you catch your > > breath, you look around.... and you begin to notice > > that Holland has > > windmills....and Holland has tulips. Holland even > > has Rembrandts. > > > > But everyone you know is busy coming and going from > > Italy... and they're > > all bragging about what a wonderful time they had > > there. And for the > > rest of your life, you will say " Yes, that's where I > > was supposed to go. > > That's what I had planned. " > > > > And the pain of that will never, ever, ever, ever go > > away... because the > > loss of that dream is a very very significant loss. > > > > But... if you spend your life mourning the fact that > > you didn't get to > > Italy, you may never be free to enjoy the very > > special, the very lovely > > things ... about Holland. > > > > > > > > > __________________________________ > - PC Magazine Editors' Choice 2005 > http://mail. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 That so brought tears to my eyes ! I tell you I get stopped everywhere I go with ....People tell me how truly beautiful she is ...total strangers stop me each and every day....A lady in church on Sunday when we were doing the sign of peace...asked me if she could give her a kiss.....she was with her 6 month of grandson also. is special and not many people choose to see that ...they just see how cute she truly is. It is all in your prospective. leah Forsyth <leahs_male@...> wrote: This was sent to me by Sari, who also belongs to the group.. Id just like to share cos i thought it was pretty neat. Thanks Sari I am often asked to describe the experience of raising a child with adisability - to try to help people who have not shared that uniqueexperience to understand it, to imagine how it would feel. It's likethis......When you're going to have a baby, it's like planning a fabulous vacationtrip - to Italy. You buy a bunch of guide books and make your wonderfulplans. The Coliseum. The Michelangelo . The gondolas in Venice. Youmay learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You packyour bags and off you go. Several hours later, the plane lands. Thestewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!I'm supposed to be in Italy. All my life I've dreamed of going toItaly."But there's been a change in the flight plan. They've landed in Hollandand there you must stay.The important thing is that they haven't taken you to a horrible,disgusting, filthy place, full of pestilence, famine and disease. It'sjust a different place.So you must go out and buy new guide books. And you must learn a wholenew language. And you will meet a whole new group of people you wouldnever have met.It's just a different place. It's slower-paced than Italy, less flashythan Italy. But after you've been there for a while and you catch yourbreath, you look around.... and you begin to notice that Holland haswindmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they'reall bragging about what a wonderful time they had there. And for therest of your life, you will say "Yes, that's where I was supposed to go.That's what I had planned." And the pain of that will never, ever, ever, ever go away... because theloss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovelythings ... about Holland.<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> for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 .................I totally agree. Life could be so much worse, this is a little bump in the road....and I have 4 people in my house with BPES! How <reneehow@...> wrote: Hi all,I just read this email and had a couple of reactions.Please understand that these are just my opinions.I like the concept of Italy vs. Holland. We have 2kids, one with BPES and one without. Both have beenentirely different than we would have ever imagined,somewhat like a fantasy vacation that is a littledifferent than we'd planned. HOWEVER, BPES is not a disability. Anyone who tellsyou it is doesn't understand what constitutes adisability. My sister is disabled - profoundly. She isin her mid-30s and has the intellectual capacity of a3 year old. She cannot remain potty trained with anyconsistency. She is confined to a wheel chair. She isdisabled.My husband has BPES. When I met him I noticed therewas something a little funny about his eye, and didn'tthink anything else about it. Most people don't evennotice anything at all (I was just looking closelybecause I thought he was cute). His BPES is one ratherinsignificant element of who he is. He is the mostwonderful, kind, caring, brilliant man I know. Iwouldn't change a thing.Our son also has BPES. This means that he sees adoctor for his eyes more freqently than otherchildren, and will need surgery at least once. Somepeople say "oh he's sleepy." However, there is muchmore to him than his BPES.If anyone tells you your child is "disabled" becauseof BPES, they are really off base. There is a cosmeticissue with your child's eyes that may also includesome vision issues, but it is not a disability. Pleasedon't underestimate your child because of BPES.Thanks,--- leah Forsyth <leahs_male@...> wrote:> This was sent to me by Sari, who also belongs to the> group.. Id just like to share cos i thought it was> pretty neat. Thanks Sari> > > I am often asked to describe the experience of> raising a child with a> disability - to try to help people who have not> shared that unique> experience to understand it, to imagine how it would> feel. It's like> this......> > When you're going to have a baby, it's like planning> a fabulous vacation> trip - to Italy. You buy a bunch of guide books and> make your wonderful> plans. The Coliseum. The Michelangelo . The> gondolas in Venice. You> may learn some handy phrases in Italian. It's all> very exciting.> > After months of eager anticipation, the day finally> arrives. You pack> your bags and off you go. Several hours later, the> plane lands. The> stewardess comes in and says, "Welcome to Holland."> > "Holland?!?" you say. "What do you mean Holland?? I> signed up for Italy!> I'm supposed to be in Italy. All my life I've> dreamed of going to> Italy."> > But there's been a change in the flight plan.> They've landed in Holland> and there you must stay.> > The important thing is that they haven't taken you> to a horrible,> disgusting, filthy place, full of pestilence, famine> and disease. It's> just a different place.> So you must go out and buy new guide books. And you> must learn a whole> new language. And you will meet a whole new group of> people you would> never have met.> It's just a different place. It's slower-paced than> Italy, less flashy> than Italy. But after you've been there for a while> and you catch your> breath, you look around.... and you begin to notice> that Holland has> windmills....and Holland has tulips. Holland even> has Rembrandts.> > But everyone you know is busy coming and going from> Italy... and they're> all bragging about what a wonderful time they had> there. And for the> rest of your life, you will say "Yes, that's where I> was supposed to go.> That's what I had planned." > > And the pain of that will never, ever, ever, ever go> away... because the> loss of that dream is a very very significant loss.> > But... if you spend your life mourning the fact that> you didn't get to > Italy, you may never be free to enjoy the very> special, the very lovely> things ... about Holland.> > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 I am soooooooooooo blessed 3 x's over and loving it. I must admit there are hard days and I wish it would just " go away" but I wouldn't change a thing, I am so in love with all my kids.....BPES or not wouldn't make a difference. I had all of them knowing things could turn out this way .....so be it...it did. j j <samus_aran76@...> wrote: Hey All ~ I don't know the peom bugged me a bit in this situation. So people with BPES look a lil different then the rest of us and they have to have surgery. Yes I would have rather my daughter not have been born with BPES but she was and she is still beautiful, healthy, and NORMAL. It isn't a dissability! People with this are the same as the rest of us. I am happy for my daughter just the way she is because she is what God intended for me and she looks just like the man I love. It's allmost like being upset because your child has green eyes and you wanted it to have blue. There are just not as many people with BPES that there are with green eyes. That kind of attitude is like you feel as though you have been short changed and that is wrong. You have actually been blessed with a wonderful gift. ~ DeMartileleah Forsyth <leahs_male@...> wrote: This was sent to me by Sari, who also belongs to the group.. Id just like to share cos i thought it was pretty neat. Thanks Sari I am often asked to describe the experience of raising a child with adisability - to try to help people who have not shared that uniqueexperience to understand it, to imagine how it would feel. It's likethis......When you're going to have a baby, it's like planning a fabulous vacationtrip - to Italy. You buy a bunch of guide books and make your wonderfulplans. The Coliseum. The Michelangelo . The gondolas in Venice. Youmay learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You packyour bags and off you go. Several hours later, the plane lands. Thestewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!I'm supposed to be in Italy. All my life I've dreamed of going toItaly."But there's been a change in the flight plan. They've landed in Hollandand there you must stay.The important thing is that they haven't taken you to a horrible,disgusting, filthy place, full of pestilence, famine and disease. It'sjust a different place.So you must go out and buy new guide books. And you must learn a wholenew language. And you will meet a whole new group of people you wouldnever have met.It's just a different place. It's slower-paced than Italy, less flashythan Italy. But after you've been there for a while and you catch yourbreath, you look around.... and you begin to notice that Holland haswindmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they'reall bragging about what a wonderful time they had there. And for therest of your life, you will say "Yes, that's where I was supposed to go.That's what I had planned." And the pain of that will never, ever, ever, ever go away... because theloss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovelythings ... about Holland. for GoodClick here to donate to the Hurricane Katrina relief effort. <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> for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Leah I am glad that someone else felt the same as me,I was worried replying,as i didnt want to give the wrong impression. My husband has 2 unlces in their 60s both with mental ages of young children so I do understand the servere end of disability,but I also believe we are the mild end. Thaks for your posting leah Forsyth <leahs_male@...> wrote: Hi , Thanks for you orpinion. In your case bpes may not be seen as adisability but in my Ethans case i see it as a mild disability.. My nephewwas born with cerebal palsy, is totally deaf and suffers from anaphalacticreactions, i also see that as a major disability but the fact that my sonhas the low muscle tone etc that means he is still in nappies at 6 is adisabilty also. It sure fitted my thinking along the lines as i hoped this,my last child would be reaching all his normal milestones at appropriatetimes etc.. I didnt have wonderful visions of still changing nappies at 6years old. However i do see his wonderful qualities and i wouldnt change himfor the world.I didnt mean to be in any way offensive by sending this on ... it just hitthe nail on the head with me thats all..tho it obviously didnt do a lot forothers. Re: blepharophimosis a parents perspective> Hi all,>> I just read this email and had a couple of reactions.> Please understand that these are just my opinions.>> I like the concept of Italy vs. Holland. We have 2> kids, one with BPES and one without. Both have been> entirely different than we would have ever imagined,> somewhat like a fantasy vacation that is a little> different than we'd planned.>> HOWEVER, BPES is not a disability. Anyone who tells> you it is doesn't understand what constitutes a> disability. My sister is disabled - profoundly. She is> in her mid-30s and has the intellectual capacity of a> 3 year old. She cannot remain potty trained with any> consistency. She is confined to a wheel chair. She is> disabled.>> My husband has BPES. When I met him I noticed there> was something a little funny about his eye, and didn't> think anything else about it. Most people don't even> notice anything at all (I was just looking closely> because I thought he was cute). His BPES is one rather> insignificant element of who he is. He is the most> wonderful, kind, caring, brilliant man I know. I> wouldn't change a thing.>> Our son also has BPES. This means that he sees a> doctor for his eyes more freqently than other> children, and will need surgery at least once. Some> people say "oh he's sleepy." However, there is much> more to him than his BPES.>> If anyone tells you your child is "disabled" because> of BPES, they are really off base. There is a cosmetic> issue with your child's eyes that may also include> some vision issues, but it is not a disability. Please> don't underestimate your child because of BPES.>> Thanks,>> >>> --- leah Forsyth <leahs_male@...> wrote:>> > This was sent to me by Sari, who also belongs to the> > group.. Id just like to share cos i thought it was> > pretty neat. Thanks Sari> >> >> > I am often asked to describe the experience of> > raising a child with a> > disability - to try to help people who have not> > shared that unique> > experience to understand it, to imagine how it would> > feel. It's like> > this......> >> > When you're going to have a baby, it's like planning> > a fabulous vacation> > trip - to Italy. You buy a bunch of guide books and> > make your wonderful> > plans. The Coliseum. The Michelangelo . The> > gondolas in Venice. You> > may learn some handy phrases in Italian. It's all> > very exciting.> >> > After months of eager anticipation, the day finally> > arrives. You pack> > your bags and off you go. Several hours later, the> > plane lands. The> > stewardess comes in and says, "Welcome to Holland."> >> > "Holland?!?" you say. "What do you mean Holland?? I> > signed up for Italy!> > I'm supposed to be in Italy. All my life I've> > dreamed of going to> > Italy."> >> > But there's been a change in the flight plan.> > They've landed in Holland> > and there you must stay.> >> > The important thing is that they haven't taken you> > to a horrible,> > disgusting, filthy place, full of pestilence, famine> > and disease. It's> > just a different place.> > So you must go out and buy new guide books. And you> > must learn a whole> > new language. And you will meet a whole new group of> > people you would> > never have met.> > It's just a different place. It's slower-paced than> > Italy, less flashy> > than Italy. But after you've been there for a while> > and you catch your> > breath, you look around.... and you begin to notice> > that Holland has> > windmills....and Holland has tulips. Holland even> > has Rembrandts.> >> > But everyone you know is busy coming and going from> > Italy... and they're> > all bragging about what a wonderful time they had> > there. And for the> > rest of your life, you will say "Yes, that's where I> > was supposed to go.> > That's what I had planned."> >> > And the pain of that will never, ever, ever, ever go> > away... because the> > loss of that dream is a very very significant loss.> >> > But... if you spend your life mourning the fact that> > you didn't get to> > Italy, you may never be free to enjoy the very> > special, the very lovely> > things ... about Holland.> >> >>>>>> __________________________________> - PC Magazine Editors' Choice 2005> http://mail.>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi I just have to agree that BPES isn't a disability. It is not necessarily always easy, especially when your children are having operations, but not a disability. Almost everything wonderful and not so wonderful in my life, was like that analogy, planned on going to Italy but I ended up in Holland, or on the moon, or somewhere else entirely. I have never considered myself to be disabled, and neither did my parents, it kind of surprises me that people draw that conclusion. Not that there is anything wrong with being disabled, it's just that, no one wants to be labeled, and then it's worse when the label is inaccurate. > > > This was sent to me by Sari, who also belongs to the > > group.. Id just like to share cos i thought it was > > pretty neat. Thanks Sari > > > > > > I am often asked to describe the experience of > > raising a child with a > > disability - to try to help people who have not > > shared that unique > > experience to understand it, to imagine how it would > > feel. It's like > > this...... > > > > When you're going to have a baby, it's like planning > > a fabulous vacation > > trip - to Italy. You buy a bunch of guide books and > > make your wonderful > > plans. The Coliseum. The Michelangelo . The > > gondolas in Venice. You > > may learn some handy phrases in Italian. It's all > > very exciting. > > > > After months of eager anticipation, the day finally > > arrives. You pack > > your bags and off you go. Several hours later, the > > plane lands. The > > stewardess comes in and says, " Welcome to Holland. " > > > > " Holland?!? " you say. " What do you mean Holland?? I > > signed up for Italy! > > I'm supposed to be in Italy. All my life I've > > dreamed of going to > > Italy. " > > > > But there's been a change in the flight plan. > > They've landed in Holland > > and there you must stay. > > > > The important thing is that they haven't taken you > > to a horrible, > > disgusting, filthy place, full of pestilence, famine > > and disease. It's > > just a different place. > > So you must go out and buy new guide books. And you > > must learn a whole > > new language. And you will meet a whole new group of > > people you would > > never have met. > > It's just a different place. It's slower-paced than > > Italy, less flashy > > than Italy. But after you've been there for a while > > and you catch your > > breath, you look around.... and you begin to notice > > that Holland has > > windmills....and Holland has tulips. Holland even > > has Rembrandts. > > > > But everyone you know is busy coming and going from > > Italy... and they're > > all bragging about what a wonderful time they had > > there. And for the > > rest of your life, you will say " Yes, that's where I > > was supposed to go. > > That's what I had planned. " > > > > And the pain of that will never, ever, ever, ever go > > away... because the > > loss of that dream is a very very significant loss. > > > > But... if you spend your life mourning the fact that > > you didn't get to > > Italy, you may never be free to enjoy the very > > special, the very lovely > > things ... about Holland. > > > > > > > > > __________________________________ > - PC Magazine Editors' Choice 2005 > http://mail. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hello~ I agree it is not a good way to label somebody like that. I think if you label somebody dissabled exspecially when it is involved with something like this, I think it gives them this exspectation to live up to and a crutch. That way of handling it is not healthy and I would guess that it would hold someone back from what they could actually accomplish if not labeled. My father in law and husband are normal people, they aren't slow, or dissabled in any way. They hold normal good jobs and live normal lives. I think maybe parents taking on the thought that their child has this dissability subconciously might be why their children seem to be behind. Everything I have found that talks about BPES says that people with it have normal intelligence. ~ bethgordon03 <bethgordon03@...> wrote: HiI just have to agree that BPES isn't a disability. It is not necessarily always easy, especially when your children are having operations, but not a disability. Almost everything wonderful and not so wonderful in my life, was like that analogy, planned on going to Italy but I ended up in Holland, or on the moon, or somewhere else entirely.I have never considered myself to be disabled, and neither did my parents, it kind of surprises me that people draw that conclusion. Not that there is anything wrong with being disabled, it's just that, no one wants to be labeled, and then it's worse when the label is inaccurate.> > > This was sent to me by Sari, who also belongs to the> > group.. Id just like to share cos i thought it was> > pretty neat. Thanks Sari> > > > > > I am often asked to describe the experience of> > raising a child with a> > disability - to try to help people who have not> > shared that unique> > experience to understand it, to imagine how it would> > feel. It's like> > this......> > > > When you're going to have a baby, it's like planning> > a fabulous vacation> > trip - to Italy. You buy a bunch of guide books and> > make your wonderful> > plans. The Coliseum. The Michelangelo . The> > gondolas in Venice. You> > may learn some handy phrases in Italian. It's all> > very exciting.> > > > After months of eager anticipation, the day finally> > arrives. You pack> > your bags and off you go. Several hours later, the> > plane lands. The> > stewardess comes in and says, "Welcome to Holland."> > > > "Holland?!?" you say. "What do you mean Holland?? I> > signed up for Italy!> > I'm supposed to be in Italy. All my life I've> > dreamed of going to> > Italy."> > > > But there's been a change in the flight plan.> > They've landed in Holland> > and there you must stay.> > > > The important thing is that they haven't taken you> > to a horrible,> > disgusting, filthy place, full of pestilence, famine> > and disease. It's> > just a different place.> > So you must go out and buy new guide books. And you> > must learn a whole> > new language. And you will meet a whole new group of> > people you would> > never have met.> > It's just a different place. It's slower-paced than> > Italy, less flashy> > than Italy. But after you've been there for a while> > and you catch your> > breath, you look around.... and you begin to notice> > that Holland has> > windmills....and Holland has tulips. Holland even> > has Rembrandts.> > > > But everyone you know is busy coming and going from> > Italy... and they're> > all bragging about what a wonderful time they had> > there. And for the> > rest of your life, you will say "Yes, that's where I> > was supposed to go.> > That's what I had planned." > > > > And the pain of that will never, ever, ever, ever go> > away... because the> > loss of that dream is a very very significant loss.> > > > But... if you spend your life mourning the fact that> > you didn't get to > > Italy, you may never be free to enjoy the very> > special, the very lovely> > things ... about Holland.> > > > > > > > > __________________________________ > - PC Magazine Editors' Choice 2005 > http://mail.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Thank you Tracey for your reply. Ethan also recieves a disability allowance through the government so medical proffessionals have agreed he has a disability. Thanks all for your comments, we have all different ways of thinking and thats what makes life so interesting. I recently looked at a video of Ethan before he had his surgery and boy what a difference it has made to his whole appearance. You sort of take it for granted years down the track after surgery but when you look back it makes you really appreciate our advanced medical world. Ethan has a specialist appointment on Monday so it will be very interesting to see what comes out of it as he has really started squinting with one eye and the other eye isnt so great either. Has anyone else had this and how effective are sunglasses to keep on a an active 6 year old. Take Care everyone Re: blepharophimosis a parents perspective> Hi all,>> I just read this email and had a couple of reactions.> Please understand that these are just my opinions.>> I like the concept of Italy vs. Holland. We have 2> kids, one with BPES and one without. Both have been> entirely different than we would have ever imagined,> somewhat like a fantasy vacation that is a little> different than we'd planned.>> HOWEVER, BPES is not a disability. Anyone who tells> you it is doesn't understand what constitutes a> disability. My sister is disabled - profoundly. She is> in her mid-30s and has the intellectual capacity of a> 3 year old. She cannot remain potty trained with any> consistency. She is confined to a wheel chair. She is> disabled.>> My husband has BPES. When I met him I noticed there> was something a little funny about his eye, and didn't> think anything else about it. Most people don't even> notice anything at all (I was just looking closely> because I thought he was cute). His BPES is one rather> insignificant element of who he is. He is the most> wonderful, kind, caring, brilliant man I know. I> wouldn't change a thing.>> Our son also has BPES. This means that he sees a> doctor for his eyes more freqently than other> children, and will need surgery at least once. Some> people say "oh he's sleepy." However, there is much> more to him than his BPES.>> If anyone tells you your child is "disabled" because> of BPES, they are really off base. There is a cosmetic> issue with your child's eyes that may also include> some vision issues, but it is not a disability. Please> don't underestimate your child because of BPES.>> Thanks,>> >>> --- leah Forsyth <leahs_male@...> wrote:>> > This was sent to me by Sari, who also belongs to the> > group.. Id just like to share cos i thought it was> > pretty neat. Thanks Sari> >> >> > I am often asked to describe the experience of> > raising a child with a> > disability - to try to help people who have not> > shared that unique> > experience to understand it, to imagine how it would> > feel. It's like> > this......> >> > When you're going to have a baby, it's like planning> > a fabulous vacation> > trip - to Italy. You buy a bunch of guide books and> > make your wonderful> > plans. The Coliseum. The Michelangelo . The> > gondolas in Venice. You> > may learn some handy phrases in Italian. It's all> > very exciting.> >> > After months of eager anticipation, the day finally> > arrives. You pack> > your bags and off you go. Several hours later, the> > plane lands. The> > stewardess comes in and says, "Welcome to Holland."> >> > "Holland?!?" you say. "What do you mean Holland?? I> > signed up for Italy!> > I'm supposed to be in Italy. All my life I've> > dreamed of going to> > Italy."> >> > But there's been a change in the flight plan.> > They've landed in Holland> > and there you must stay.> >> > The important thing is that they haven't taken you> > to a horrible,> > disgusting, filthy place, full of pestilence, famine> > and disease. It's> > just a different place.> > So you must go out and buy new guide books. And you> > must learn a whole> > new language. And you will meet a whole new group of> > people you would> > never have met.> > It's just a different place. It's slower-paced than> > Italy, less flashy> > than Italy. But after you've been there for a while> > and you catch your> > breath, you look around.... and you begin to notice> > that Holland has> > windmills....and Holland has tulips. Holland even> > has Rembrandts.> >> > But everyone you know is busy coming and going from> > Italy... and they're> > all bragging about what a wonderful time they had> > there. And for the> > rest of your life, you will say "Yes, that's where I> > was supposed to go.> > That's what I had planned."> >> > And the pain of that will never, ever, ever, ever go> > away... because the> > loss of that dream is a very very significant loss.> >> > But... if you spend your life mourning the fact that> > you didn't get to> > Italy, you may never be free to enjoy the very> > special, the very lovely> > things ... about Holland.> >> >>>>>> __________________________________> - PC Magazine Editors' Choice 2005> http://mail.>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Hello, just a thought on sunglasses…my daughter is really sensitive to the sunlight, she needs glasses anyway, so we now have the “photogray” lenses. They turn dark when sunlight hits them and turn back into clear glasses right away. Insurance didn’t pay for that, but we thought it was worth trying to keep after her with sunglasses, which we couldn’t really do when she was away from us a school. This is just an idea to try. Sheila, ’s mom Re: blepharophimosis a parents perspective Leah I am glad that someone else felt the same as me,I was worried replying,as i didnt want to give the wrong impression. My husband has 2 unlces in their 60s both with mental ages of young children so I do understand the servere end of disability,but I also believe we are the mild end. Thaks for your posting leah Forsyth <leahs_male@...> wrote: Hi , Thanks for you orpinion. In your case bpes may not be seen as a disability but in my Ethans case i see it as a mild disability.. My nephew was born with cerebal palsy, is totally deaf and suffers from anaphalactic reactions, i also see that as a major disability but the fact that my son has the low muscle tone etc that means he is still in nappies at 6 is a disabilty also. It sure fitted my thinking along the lines as i hoped this, my last child would be reaching all his normal milestones at appropriate times etc.. I didnt have wonderful visions of still changing nappies at 6 years old. However i do see his wonderful qualities and i wouldnt change him for the world. I didnt mean to be in any way offensive by sending this on ... it just hit the nail on the head with me thats all..tho it obviously didnt do a lot for others. Re: blepharophimosis a parents perspective > Hi all, > > I just read this email and had a couple of reactions. > Please understand that these are just my opinions. > > I like the concept of Italy vs. Holland. We have 2 > kids, one with BPES and one without. Both have been > entirely different than we would have ever imagined, > somewhat like a fantasy vacation that is a little > different than we'd planned. > > HOWEVER, BPES is not a disability. Anyone who tells > you it is doesn't understand what constitutes a > disability. My sister is disabled - profoundly. She is > in her mid-30s and has the intellectual capacity of a > 3 year old. She cannot remain potty trained with any > consistency. She is confined to a wheel chair. She is > disabled. > > My husband has BPES. When I met him I noticed there > was something a little funny about his eye, and didn't > think anything else about it. Most people don't even > notice anything at all (I was just looking closely > because I thought he was cute). His BPES is one rather > insignificant element of who he is. He is the most > wonderful, kind, caring, brilliant man I know. I > wouldn't change a thing. > > Our son also has BPES. This means that he sees a > doctor for his eyes more freqently than other > children, and will need surgery at least once. Some > people say " oh he's sleepy. " However, there is much > more to him than his BPES. > > If anyone tells you your child is " disabled " because > of BPES, they are really off base. There is a cosmetic > issue with your child's eyes that may also include > some vision issues, but it is not a disability. Please > don't underestimate your child because of BPES. > > Thanks, > > > > > --- leah Forsyth <leahs_male@...> wrote: > > > This was sent to me by Sari, who also belongs to the > > group.. Id just like to share cos i thought it was > > pretty neat. Thanks Sari > > > > > > I am often asked to describe the experience of > > raising a child with a > > disability - to try to help people who have not > > shared that unique > > experience to understand it, to imagine how it would > > feel. It's like > > this...... > > > > When you're going to have a baby, it's like planning > > a fabulous vacation > > trip - to Italy. You buy a bunch of guide books and > > make your wonderful > > plans. The Coliseum. The Michelangelo . The > > gondolas in Venice. You > > may learn some handy phrases in Italian. It's all > > very exciting. > > > > After months of eager anticipation, the day finally > > arrives. You pack > > your bags and off you go. Several hours later, the > > plane lands. The > > stewardess comes in and says, " Welcome to Holland. " > > > > " Holland?!? " you say. " What do you mean Holland?? I > > signed up for Italy! > > I'm supposed to be in Italy. All my life I've > > dreamed of going to > > Italy. " > > > > But there's been a change in the flight plan. > > They've landed in Holland > > and there you must stay. > > > > The important thing is that they haven't taken you > > to a horrible, > > disgusting, filthy place, full of pestilence, famine > > and disease. It's > > just a different place. > > So you must go out and buy new guide books. And you > > must learn a whole > > new language. And you will meet a whole new group of > > people you would > > never have met. > > It's just a different place. It's slower-paced than > > Italy, less flashy > > than Italy. But after you've been there for a while > > and you catch your > > breath, you look around.... and you begin to notice > > that Holland has > > windmills....and Holland has tulips. Holland even > > has Rembrandts. > > > > But everyone you know is busy coming and going from > > Italy... and they're > > all bragging about what a wonderful time they had > > there. And for the > > rest of your life, you will say " Yes, that's where I > > was supposed to go. > > That's what I had planned. " > > > > And the pain of that will never, ever, ever, ever go > > away... because the > > loss of that dream is a very very significant loss. > > > > But... if you spend your life mourning the fact that > > you didn't get to > > Italy, you may never be free to enjoy the very > > special, the very lovely > > things ... about Holland. > > > > > > > > > __________________________________ > - PC Magazine Editors' Choice 2005 > http://mail. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Hi Leah, We also get DLA and as I chose not to go back to work after was born to care for her I get what is called a carers allowance,it is means tested so you could work part time if you wanted but can only earn up to £82.00 and pay no tax. We go and see a consultant in Kent every 3 months to make sure her lids are not covering her pupils,I thought she had a lazy eye/squint but they say her eyes are both working together,the consultant is very good after the bad advice earlier in emilys case its great to have support from the consultant. Has Ethan had all his surgery ie the ethicanthus repair or have they put mucle in his lids yet that was removed from his leg?.I have been told they will do s when she is between 5 and 7. Good luck for Monday let me know how you get on. Take Care leah Forsyth <leahs_male@...> wrote: Thank you Tracey for your reply. Ethan also recieves a disability allowance through the government so medical proffessionals have agreed he has a disability. Thanks all for your comments, we have all different ways of thinking and thats what makes life so interesting. I recently looked at a video of Ethan before he had his surgery and boy what a difference it has made to his whole appearance. You sort of take it for granted years down the track after surgery but when you look back it makes you really appreciate our advanced medical world. Ethan has a specialist appointment on Monday so it will be very interesting to see what comes out of it as he has really started squinting with one eye and the other eye isnt so great either. Has anyone else had this and how effective are sunglasses to keep on a an active 6 year old. Take Care everyone Re: blepharophimosis a parents perspective> Hi all,>> I just read this email and had a couple of reactions.> Please understand that these are just my opinions.>> I like the concept of Italy vs. Holland. We have 2> kids, one with BPES and one without. Both have been> entirely different than we would have ever imagined,> somewhat like a fantasy vacation that is a little> different than we'd planned.>> HOWEVER, BPES is not a disability. Anyone who tells> you it is doesn't understand what constitutes a> disability. My sister is disabled - profoundly. She is> in her mid-30s and has the intellectual capacity of a> 3 year old. She cannot remain potty trained with any> consistency. She is confined to a wheel chair. She is> disabled.>> My husband has BPES. When I met him I noticed there> was something a little funny about his eye, and didn't> think anything else about it. Most people don't even> notice anything at all (I was just looking closely> because I thought he was cute). His BPES is one rather> insignificant element of who he is. He is the most> wonderful, kind, caring, brilliant man I know. I> wouldn't change a thing.>> Our son also has BPES. This means that he sees a> doctor for his eyes more freqently than other> children, and will need surgery at least once. Some> people say "oh he's sleepy." However, there is much> more to him than his BPES.>> If anyone tells you your child is "disabled" because> of BPES, they are really off base. There is a cosmetic> issue with your child's eyes that may also include> some vision issues, but it is not a disability. Please> don't underestimate your child because of BPES.>> Thanks,>> >>> --- leah Forsyth <leahs_male@...> wrote:>> > This was sent to me by Sari, who also belongs to the> > group.. Id just like to share cos i thought it was> > pretty neat. Thanks Sari> >> >> > I am often asked to describe the experience of> > raising a child with a> > disability - to try to help people who have not> > shared that unique> > experience to understand it, to imagine how it would> > feel. It's like> > this......> >> > When you're going to have a baby, it's like planning> > a fabulous vacation> > trip - to Italy. You buy a bunch of guide books and> > make your wonderful> > plans. The Coliseum. The Michelangelo . The> > gondolas in Venice. You> > may learn some handy phrases in Italian. It's all> > very exciting.> >> > After months of eager anticipation, the day finally> > arrives. You pack> > your bags and off you go. Several hours later, the> > plane lands. The> > stewardess comes in and says, "Welcome to Holland."> >> > "Holland?!?" you say. "What do you mean Holland?? I> > signed up for Italy!> > I'm supposed to be in Italy. All my life I've> > dreamed of going to> > Italy."> >> > But there's been a change in the flight plan.> > They've landed in Holland> > and there you must stay.> >> > The important thing is that they haven't taken you> > to a horrible,> > disgusting, filthy place, full of pestilence, famine> > and disease. It's> > just a different place.> > So you must go out and buy new guide books. And you> > must learn a whole> > new language. And you will meet a whole new group of> > people you would> > never have met.> > It's just a different place. It's slower-paced than> > Italy, less flashy> > than Italy. But after you've been there for a while> > and you catch your> > breath, you look around.... and you begin to notice> > that Holland has> > windmills....and Holland has tulips. Holland even> > has Rembrandts.> >> > But everyone you know is busy coming and going from> > Italy... and they're> > all bragging about what a wonderful time they had> > there. And for the> > rest of your life, you will say "Yes, that's where I> > was supposed to go.> > That's what I had planned."> >> > And the pain of that will never, ever, ever, ever go> > away... because the> > loss of that dream is a very very significant loss.> >> > But... if you spend your life mourning the fact that> > you didn't get to> > Italy, you may never be free to enjoy the very> > special, the very lovely> > things ... about Holland.> >> >>>>>> __________________________________> - PC Magazine Editors' Choice 2005> http://mail.>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Oh, Sharon, is such an adorable baby, I don't even have to look at the pictures, I have them memorized, the beautiful christening photos you shared. This was sent to me by Sari, who also belongs to the group.. Id just like to share cos i thought it was pretty neat. Thanks Sari > > > I am often asked to describe the experience of raising a child with a > disability - to try to help people who have not shared that unique > experience to understand it, to imagine how it would feel. It's like > this...... > > When you're going to have a baby, it's like planning a fabulous vacation > trip - to Italy. You buy a bunch of guide books and make your wonderful > plans. The Coliseum. The Michelangelo . The gondolas in Venice. You > may learn some handy phrases in Italian. It's all very exciting. > > After months of eager anticipation, the day finally arrives. You pack > your bags and off you go. Several hours later, the plane lands. The > stewardess comes in and says, " Welcome to Holland. " > > " Holland?!? " you say. " What do you mean Holland?? I signed up for Italy! > I'm supposed to be in Italy. All my life I've dreamed of going to > Italy. " > > But there's been a change in the flight plan. They've landed in Holland > and there you must stay. > > The important thing is that they haven't taken you to a horrible, > disgusting, filthy place, full of pestilence, famine and disease. It's > just a different place. > So you must go out and buy new guide books. And you must learn a whole > new language. And you will meet a whole new group of people you would > never have met. > It's just a different place. It's slower-paced than Italy, less flashy > than Italy. But after you've been there for a while and you catch your > breath, you look around.... and you begin to notice that Holland has > windmills....and Holland has tulips. Holland even has Rembrandts. > > But everyone you know is busy coming and going from Italy... and they're > all bragging about what a wonderful time they had there. And for the > rest of your life, you will say " Yes, that's where I was supposed to go. > That's what I had planned. " > > And the pain of that will never, ever, ever, ever go away... because the > loss of that dream is a very very significant loss. > > But... if you spend your life mourning the fact that you didn't get to > Italy, you may never be free to enjoy the very special, the very lovely > things ... about Holland. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2005 Report Share Posted October 7, 2005 Hi Leah Interested to hear Ethan is entitled to a disability allowance. My daughter Baylee is 7 with bpes and we have never been offered any financial assistance dispite her having to visit Waikato Hospital at least twice a year and undergoing surgery 4 times. We live in Gisborne and have to travel a fair way to find someone who knows what they're talking about. Did your G.P suggest you were allegable for assistance or A.C.C ? Cheers [ANDREW HAMMOND] -----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of leah ForsythSent: Thursday, 6 October 2005 10:33 AMblepharophimosis Subject: Re: blepharophimosis a parents perspective Thank you Tracey for your reply. Ethan also recieves a disability allowance through the government so medical proffessionals have agreed he has a disability. Thanks all for your comments, we have all different ways of thinking and thats what makes life so interesting. I recently looked at a video of Ethan before he had his surgery and boy what a difference it has made to his whole appearance. You sort of take it for granted years down the track after surgery but when you look back it makes you really appreciate our advanced medical world. Ethan has a specialist appointment on Monday so it will be very interesting to see what comes out of it as he has really started squinting with one eye and the other eye isnt so great either. Has anyone else had this and how effective are sunglasses to keep on a an active 6 year old. Take Care everyone Re: blepharophimosis a parents perspective> Hi all,>> I just read this email and had a couple of reactions.> Please understand that these are just my opinions.>> I like the concept of Italy vs. Holland. We have 2> kids, one with BPES and one without. Both have been> entirely different than we would have ever imagined,> somewhat like a fantasy vacation that is a little> different than we'd planned.>> HOWEVER, BPES is not a disability. Anyone who tells> you it is doesn't understand what constitutes a> disability. My sister is disabled - profoundly. She is> in her mid-30s and has the intellectual capacity of a> 3 year old. She cannot remain potty trained with any> consistency. She is confined to a wheel chair. She is> disabled.>> My husband has BPES. When I met him I noticed there> was something a little funny about his eye, and didn't> think anything else about it. Most people don't even> notice anything at all (I was just looking closely> because I thought he was cute). His BPES is one rather> insignificant element of who he is. He is the most> wonderful, kind, caring, brilliant man I know. I> wouldn't change a thing.>> Our son also has BPES. This means that he sees a> doctor for his eyes more freqently than other> children, and will need surgery at least once. Some> people say "oh he's sleepy." However, there is much> more to him than his BPES.>> If anyone tells you your child is "disabled" because> of BPES, they are really off base. There is a cosmetic> issue with your child's eyes that may also include> some vision issues, but it is not a disability. Please> don't underestimate your child because of BPES.>> Thanks,>> >>> --- leah Forsyth <leahs_male@...> wrote:>> > This was sent to me by Sari, who also belongs to the> > group.. Id just like to share cos i thought it was> > pretty neat. Thanks Sari> >> >> > I am often asked to describe the experience of> > raising a child with a> > disability - to try to help people who have not> > shared that unique> > experience to understand it, to imagine how it would> > feel. It's like> > this......> >> > When you're going to have a baby, it's like planning> > a fabulous vacation> > trip - to Italy. You buy a bunch of guide books and> > make your wonderful> > plans. The Coliseum. The Michelangelo . The> > gondolas in Venice. You> > may learn some handy phrases in Italian. It's all> > very exciting.> >> > After months of eager anticipation, the day finally> > arrives. You pack> > your bags and off you go. Several hours later, the> > plane lands. The> > stewardess comes in and says, "Welcome to Holland."> >> > "Holland?!?" you say. "What do you mean Holland?? I> > signed up for Italy!> > I'm supposed to be in Italy. All my life I've> > dreamed of going to> > Italy."> >> > But there's been a change in the flight plan.> > They've landed in Holland> > and there you must stay.> >> > The important thing is that they haven't taken you> > to a horrible,> > disgusting, filthy place, full of pestilence, famine> > and disease. It's> > just a different place.> > So you must go out and buy new guide books. And you> > must learn a whole> > new language. And you will meet a whole new group of> > people you would> > never have met.> > It's just a different place. It's slower-paced than> > Italy, less flashy> > than Italy. But after you've been there for a while> > and you catch your> > breath, you look around.... and you begin to notice> > that Holland has> > windmills....and Holland has tulips. Holland even> > has Rembrandts.> >> > But everyone you know is busy coming and going from> > Italy... and they're> > all bragging about what a wonderful time they had> > there. And for the> > rest of your life, you will say "Yes, that's where I> > was supposed to go.> > That's what I had planned."> >> > And the pain of that will never, ever, ever, ever go> > away... because the> > loss of that dream is a very very significant loss.> >> > But... if you spend your life mourning the fact that> > you didn't get to> > Italy, you may never be free to enjoy the very> > special, the very lovely> > things ... about Holland.> >> >>>>>> __________________________________> - PC Magazine Editors' Choice 2005> http://mail.>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 Thanks so much Beth. Will type out her update in a few as soon as i settle eveyone down forthe night. She will have surgery again in the next few weeks...will explain in a longer email later.bethgordon03 <bethgordon03@...> wrote: Oh, Sharon, is such an adorable baby, I don't even have to look at the pictures, I have them memorized, the beautiful christening photos you shared. This was sent to me by Sari, who also belongs to the group.. Id just like to share cos i thought it was pretty neat. Thanks Sari> > > I am often asked to describe the experience of raising a child with a> disability - to try to help people who have not shared that unique> experience to understand it, to imagine how it would feel. It's like> this......> > When you're going to have a baby, it's like planning a fabulous vacation> trip - to Italy. You buy a bunch of guide books and make your wonderful> plans. The Coliseum. The Michelangelo . The gondolas in Venice. You> may learn some handy phrases in Italian. It's all very exciting.> > After months of eager anticipation, the day finally arrives. You pack> your bags and off you go. Several hours later, the plane lands. The> stewardess comes in and says, "Welcome to Holland."> > "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!> I'm supposed to be in Italy. All my life I've dreamed of going to> Italy."> > But there's been a change in the flight plan. They've landed in Holland> and there you must stay.> > The important thing is that they haven't taken you to a horrible,> disgusting, filthy place, full of pestilence, famine and disease. It's> just a different place.> So you must go out and buy new guide books. And you must learn a whole> new language. And you will meet a whole new group of people you would> never have met.> It's just a different place. It's slower-paced than Italy, less flashy> than Italy. But after you've been there for a while and you catch your> breath, you look around.... and you begin to notice that Holland has> windmills....and Holland has tulips. Holland even has Rembrandts.> > But everyone you know is busy coming and going from Italy... and they're> all bragging about what a wonderful time they had there. And for the> rest of your life, you will say "Yes, that's where I was supposed to go.> That's what I had planned." > > And the pain of that will never, ever, ever, ever go away... because the> loss of that dream is a very very significant loss.> > But... if you spend your life mourning the fact that you didn't get to > Italy, you may never be free to enjoy the very special, the very lovely> things ... about Holland.> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hi Tracey.. if you want to you can email me direct on leahs_male@... and i will fill you in on all Ethan has had done and how his appointment went today. Take Care. Hope to hear from you soon.. Re: blepharophimosis a parents perspective> Hi all,>> I just read this email and had a couple of reactions.> Please understand that these are just my opinions.>> I like the concept of Italy vs. Holland. We have 2> kids, one with BPES and one without. Both have been> entirely different than we would have ever imagined,> somewhat like a fantasy vacation that is a little> different than we'd planned.>> HOWEVER, BPES is not a disability. Anyone who tells> you it is doesn't understand what constitutes a> disability. My sister is disabled - profoundly. She is> in her mid-30s and has the intellectual capacity of a> 3 year old. She cannot remain potty trained with any> consistency. She is confined to a wheel chair. She is> disabled.>> My husband has BPES. When I met him I noticed there> was something a little funny about his eye, and didn't> think anything else about it. Most people don't even> notice anything at all (I was just looking closely> because I thought he was cute). His BPES is one rather> insignificant element of who he is. He is the most> wonderful, kind, caring, brilliant man I know. I> wouldn't change a thing.>> Our son also has BPES. This means that he sees a> doctor for his eyes more freqently than other> children, and will need surgery at least once. Some> people say "oh he's sleepy." However, there is much> more to him than his BPES.>> If anyone tells you your child is "disabled" because> of BPES, they are really off base. There is a cosmetic> issue with your child's eyes that may also include> some vision issues, but it is not a disability. Please> don't underestimate your child because of BPES.>> Thanks,>> >>> --- leah Forsyth <leahs_male@...> wrote:>> > This was sent to me by Sari, who also belongs to the> > group.. Id just like to share cos i thought it was> > pretty neat. Thanks Sari> >> >> > I am often asked to describe the experience of> > raising a child with a> > disability - to try to help people who have not> > shared that unique> > experience to understand it, to imagine how it would> > feel. It's like> > this......> >> > When you're going to have a baby, it's like planning> > a fabulous vacation> > trip - to Italy. You buy a bunch of guide books and> > make your wonderful> > plans. The Coliseum. The Michelangelo . The> > gondolas in Venice. You> > may learn some handy phrases in Italian. It's all> > very exciting.> >> > After months of eager anticipation, the day finally> > arrives. You pack> > your bags and off you go. Several hours later, the> > plane lands. The> > stewardess comes in and says, "Welcome to Holland."> >> > "Holland?!?" you say. "What do you mean Holland?? I> > signed up for Italy!> > I'm supposed to be in Italy. All my life I've> > dreamed of going to> > Italy."> >> > But there's been a change in the flight plan.> > They've landed in Holland> > and there you must stay.> >> > The important thing is that they haven't taken you> > to a horrible,> > disgusting, filthy place, full of pestilence, famine> > and disease. It's> > just a different place.> > So you must go out and buy new guide books. And you> > must learn a whole> > new language. And you will meet a whole new group of> > people you would> > never have met.> > It's just a different place. It's slower-paced than> > Italy, less flashy> > than Italy. But after you've been there for a while> > and you catch your> > breath, you look around.... and you begin to notice> > that Holland has> > windmills....and Holland has tulips. Holland even> > has Rembrandts.> >> > But everyone you know is busy coming and going from> > Italy... and they're> > all bragging about what a wonderful time they had> > there. And for the> > rest of your life, you will say "Yes, that's where I> > was supposed to go.> > That's what I had planned."> >> > And the pain of that will never, ever, ever, ever go> > away... because the> > loss of that dream is a very very significant loss.> >> > But... if you spend your life mourning the fact that> > you didn't get to> > Italy, you may never be free to enjoy the very> > special, the very lovely> > things ... about Holland.> >> >>>>>> __________________________________> - PC Magazine Editors' Choice 2005> http://mail.>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hi ... We are in Hastings so not so far from you. Ethan has been recieving a disability allowance for about 3 years now. We were first told about it through S.E.S (special Education Services) who were looking after Ethan at Kindy. Because he has low muscle tone as well he had to have fortnightly therapy through SES and it was through them that he was organised to see a speech therapist because he has the high roof of his mouth and front teeth out in front he finds it hard to control his mouth, to close his lips. Therefore his speech is quite hard to understand, he also used to dribble a lot. Anyway... i filled out a form at winz for the allowance and had to get my pediatrician to fill in. They way they approve it is if your child needs more one on one attention than a child of a similar age. Ethan needs nappies, cannot dress himself without help, had trouble with motorskills (writing etc) The allowance is not income tested and is $74 per fortnight. He also gets nappies supplied through the hospital which apparently you can get at 4 years old tho i wasnt told about them till Ethan was 5 1/2. I would advice you to look into the allowance especially seeing you have to travel a fair way to specialists. It is worth a try. Good luck Re: blepharophimosis a parents perspective> Hi all,>> I just read this email and had a couple of reactions.> Please understand that these are just my opinions.>> I like the concept of Italy vs. Holland. We have 2> kids, one with BPES and one without. Both have been> entirely different than we would have ever imagined,> somewhat like a fantasy vacation that is a little> different than we'd planned.>> HOWEVER, BPES is not a disability. Anyone who tells> you it is doesn't understand what constitutes a> disability. My sister is disabled - profoundly. She is> in her mid-30s and has the intellectual capacity of a> 3 year old. She cannot remain potty trained with any> consistency. She is confined to a wheel chair. She is> disabled.>> My husband has BPES. When I met him I noticed there> was something a little funny about his eye, and didn't> think anything else about it. Most people don't even> notice anything at all (I was just looking closely> because I thought he was cute). His BPES is one rather> insignificant element of who he is. He is the most> wonderful, kind, caring, brilliant man I know. I> wouldn't change a thing.>> Our son also has BPES. This means that he sees a> doctor for his eyes more freqently than other> children, and will need surgery at least once. Some> people say "oh he's sleepy." However, there is much> more to him than his BPES.>> If anyone tells you your child is "disabled" because> of BPES, they are really off base. There is a cosmetic> issue with your child's eyes that may also include> some vision issues, but it is not a disability. Please> don't underestimate your child because of BPES.>> Thanks,>> >>> --- leah Forsyth <leahs_male@...> wrote:>> > This was sent to me by Sari, who also belongs to the> > group.. Id just like to share cos i thought it was> > pretty neat. Thanks Sari> >> >> > I am often asked to describe the experience of> > raising a child with a> > disability - to try to help people who have not> > shared that unique> > experience to understand it, to imagine how it would> > feel. It's like> > this......> >> > When you're going to have a baby, it's like planning> > a fabulous vacation> > trip - to Italy. You buy a bunch of guide books and> > make your wonderful> > plans. The Coliseum. The Michelangelo . The> > gondolas in Venice. You> > may learn some handy phrases in Italian. It's all> > very exciting.> >> > After months of eager anticipation, the day finally> > arrives. You pack> > your bags and off you go. Several hours later, the> > plane lands. The> > stewardess comes in and says, "Welcome to Holland."> >> > "Holland?!?" you say. "What do you mean Holland?? I> > signed up for Italy!> > I'm supposed to be in Italy. All my life I've> > dreamed of going to> > Italy."> >> > But there's been a change in the flight plan.> > They've landed in Holland> > and there you must stay.> >> > The important thing is that they haven't taken you> > to a horrible,> > disgusting, filthy place, full of pestilence, famine> > and disease. It's> > just a different place.> > So you must go out and buy new guide books. And you> > must learn a whole> > new language. And you will meet a whole new group of> > people you would> > never have met.> > It's just a different place. It's slower-paced than> > Italy, less flashy> > than Italy. But after you've been there for a while> > and you catch your> > breath, you look around.... and you begin to notice> > that Holland has> > windmills....and Holland has tulips. Holland even> > has Rembrandts.> >> > But everyone you know is busy coming and going from> > Italy... and they're> > all bragging about what a wonderful time they had> > there. And for the> > rest of your life, you will say "Yes, that's where I> > was supposed to go.> > That's what I had planned."> >> > And the pain of that will never, ever, ever, ever go> > away... because the> > loss of that dream is a very very significant loss.> >> > But... if you spend your life mourning the fact that> > you didn't get to> > Italy, you may never be free to enjoy the very> > special, the very lovely> > things ... about Holland.> >> >>>>>> __________________________________> - PC Magazine Editors' Choice 2005> http://mail.>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Thanks Leah > > From: leah Forsyth <leahs_male@...> > Date: 2005/10/10 Mon PM 12:33:55 GMT+13:00 > blepharophimosis > Subject: Re: blepharophimosis a parents perspective > > Hi ... > > We are in Hastings so not so far from you. Ethan has been recieving a disability allowance for about 3 years now. We were first told about it through S.E.S (special Education Services) who were looking after Ethan at Kindy. Because he has low muscle tone as well he had to have fortnightly therapy through SES and it was through them that he was organised to see a speech therapist because he has the high roof of his mouth and front teeth out in front he finds it hard to control his mouth, to close his lips. Therefore his speech is quite hard to understand, he also used to dribble a lot. Anyway... i filled out a form at winz for the allowance and had to get my pediatrician to fill in. They way they approve it is if your child needs more one on one attention than a child of a similar age. Ethan needs nappies, cannot dress himself without help, had trouble with motorskills (writing etc) The allowance is not income tested and is $74 per fortnight. He also gets nappies supplied through the hospital which apparently you can get at 4 years old tho i wasnt told about them till Ethan was 5 1/2. I would advice you to look into the allowance especially seeing you have to travel a fair way to specialists. It is worth a try. Good luck > Re: blepharophimosis a parents perspective > > > > Hi all, > > > > I just read this email and had a couple of reactions. > > Please understand that these are just my opinions. > > > > I like the concept of Italy vs. Holland. We have 2 > > kids, one with BPES and one without. Both have been > > entirely different than we would have ever imagined, > > somewhat like a fantasy vacation that is a little > > different than we'd planned. > > > > HOWEVER, BPES is not a disability. Anyone who tells > > you it is doesn't understand what constitutes a > > disability. My sister is disabled - profoundly. She is > > in her mid-30s and has the intellectual capacity of a > > 3 year old. She cannot remain potty trained with any > > consistency. She is confined to a wheel chair. She is > > disabled. > > > > My husband has BPES. When I met him I noticed there > > was something a little funny about his eye, and didn't > > think anything else about it. Most people don't even > > notice anything at all (I was just looking closely > > because I thought he was cute). His BPES is one rather > > insignificant element of who he is. He is the most > > wonderful, kind, caring, brilliant man I know. I > > wouldn't change a thing. > > > > Our son also has BPES. This means that he sees a > > doctor for his eyes more freqently than other > > children, and will need surgery at least once. Some > > people say " oh he's sleepy. " However, there is much > > more to him than his BPES. > > > > If anyone tells you your child is " disabled " because > > of BPES, they are really off base. There is a cosmetic > > issue with your child's eyes that may also include > > some vision issues, but it is not a disability. Please > > don't underestimate your child because of BPES. > > > > Thanks, > > > > > > > > > > --- leah Forsyth <leahs_male@...> wrote: > > > > > This was sent to me by Sari, who also belongs to the > > > group.. Id just like to share cos i thought it was > > > pretty neat. Thanks Sari > > > > > > > > > I am often asked to describe the experience of > > > raising a child with a > > > disability - to try to help people who have not > > > shared that unique > > > experience to understand it, to imagine how it would > > > feel. It's like > > > this...... > > > > > > When you're going to have a baby, it's like planning > > > a fabulous vacation > > > trip - to Italy. You buy a bunch of guide books and > > > make your wonderful > > > plans. The Coliseum. The Michelangelo . The > > > gondolas in Venice. You > > > may learn some handy phrases in Italian. It's all > > > very exciting. > > > > > > After months of eager anticipation, the day finally > > > arrives. You pack > > > your bags and off you go. Several hours later, the > > > plane lands. The > > > stewardess comes in and says, " Welcome to Holland. " > > > > > > " Holland?!? " you say. " What do you mean Holland?? I > > > signed up for Italy! > > > I'm supposed to be in Italy. All my life I've > > > dreamed of going to > > > Italy. " > > > > > > But there's been a change in the flight plan. > > > They've landed in Holland > > > and there you must stay. > > > > > > The important thing is that they haven't taken you > > > to a horrible, > > > disgusting, filthy place, full of pestilence, famine > > > and disease. It's > > > just a different place. > > > So you must go out and buy new guide books. And you > > > must learn a whole > > > new language. And you will meet a whole new group of > > > people you would > > > never have met. > > > It's just a different place. It's slower-paced than > > > Italy, less flashy > > > than Italy. But after you've been there for a while > > > and you catch your > > > breath, you look around.... and you begin to notice > > > that Holland has > > > windmills....and Holland has tulips. Holland even > > > has Rembrandts. > > > > > > But everyone you know is busy coming and going from > > > Italy... and they're > > > all bragging about what a wonderful time they had > > > there. And for the > > > rest of your life, you will say " Yes, that's where I > > > was supposed to go. > > > That's what I had planned. " > > > > > > And the pain of that will never, ever, ever, ever go > > > away... because the > > > loss of that dream is a very very significant loss. > > > > > > But... if you spend your life mourning the fact that > > > you didn't get to > > > Italy, you may never be free to enjoy the very > > > special, the very lovely > > > things ... about Holland. > > > > > > > > > > > > > > > > __________________________________ > > - PC Magazine Editors' Choice 2005 > > http://mail. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 e, I'm a little late on the poem or email, not sure what to call it, but e, they say she's beautiful, because she is beautiful, I know you know this, but this mom wants to agree. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 ops, I blew that one! I should have put to Aydriana's mom and mis spelled baby girls name, sorry, hope i didn't spell it wrong twice. Quote Link to comment Share on other sites More sharing options...
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