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Re: Fw: introduce myself as charge

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Michele,

Thank you so much for writing out your incredible story. You show us all how

to

be fine and have Charge at the same time, just as it should be and we always

hope

it to be.

Your sense of humor shines brightly. I believe I see your parents' love and

personality

there.

So, how do you feel about gerbils these days-lol.

I believe you have found the secret of life-to enjoy it.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

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Guest guest

Michele,

Thank you so much for writing out your incredible story. You show us all how

to

be fine and have Charge at the same time, just as it should be and we always

hope

it to be.

Your sense of humor shines brightly. I believe I see your parents' love and

personality

there.

So, how do you feel about gerbils these days-lol.

I believe you have found the secret of life-to enjoy it.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

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Share on other sites

Guest guest

inspirational for those of us with little ones, to know you are so well,

active and leading a normal life.

How difficult it must have been for your parents and you all those years

ago, when nothing was known about charge.

Thank you for sharing your story I thoroughly enjoyed reading it.

love Les x

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges with mild

> CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's water broke

> and they had to rush to the hospital, and they said the cord was around me

> or whatever it was. After I was delivered, the doctors noticed I had trouble

> breathing and didn't know what was the matter so they called it birth

> defect. They also put me in intensive care and I have been to the hospital

> several times since to see if there is any thing wrong with me, they found

> out I have one kidney and a breathing problem. That was all they knew and

> they didn't say anything about my deafness. it was in 1965. I didn't asked

> my parents a lot of questions about being born with CHARGE. I knew I was

> different with vision/hearing impairment, elf shape ears, loop shoulders,

> low muscles tone, one kidney, swallowing problem, breathing problem, late

> hormone developmrnt, lack of balance, small mouth and lack of smell. I think

> that is all. well as you know my parents were very protective of me because

> they did't want to worry me and I would be fine. I noticed my right side was

> worse side than the left side, my right eye has tunnel vision but I can see

> distnce. My right ear is very bad, I only can hear the high fremqiecy, I

> have one very small kidney is not working, but my left side ear is very good

> and has moderate hearing loss. My left eye is good I can see the distance,

> but still poor eyesight. i have one good kidney. My parents fed me with a

> little dropper and it too me a long time finish it. My poor parents , I

> might made them exhausted, I didn't have a feeding tube like many CHARGE

> babies.

>

> I've had four nose operations. My first, second, and fourth weren't doing

> very well, the doctors just tried to straighten my nose and widen nostrils

> to breath through. The third one was the best. The doctor from Colorado

> Springs took out all the bones and tissues in the back of my sinus and top

> of the roof of my mouth then I can breath better. it was because I couldn't

> breath through sinus and mucus kept running down forward instead of back of

> my sinus.

>

> I didn't start walking until I was three. I started wearing hearing aids

> and glasses at four, and went to kindergarden at seven. how did do I learn

> to start walking? I think my parents told me when I had trouble with balance

> and kept falling on something on my head I had to wear helmet for a while

> until I got better. I don't know about glasses. I think they noticed I

> couldn't see well so I went to eye doctor to get my new glasses and hearing

> aids. I'm not sure I remember what mom said, I went to mentally handicapped

> school when I was three or four and it wasn't right for me and my parents

> didn't like the idea to think I'm mentally retarded and so I guess the

> doctors were wrong; I went back to audiologists to test my hearing again and

> found out I couldn't hear until I wear hearing aids. I went to preschool or

> kindergarten with regular kids then I started mainstream with hearing and

> deaf. I start in first grade at eight and I did it real well with deaf

> group. I went to oral school until eighth grade. I wanted to learn sign so I

> could communicate with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere with them to

> vacations, to the movies, go out eat, go to church and fishing camp and

> baseball. Some of my friends went to Lion Camp and church activity after I

> graduated from high shool. I kept myself busy mostly with my mom to bowling,

> lunch, golf, and gambling with her friends, I went with Mom to grocery

> shopping, Meals and Wheels for senior citizens. I miss my parents the most,

> my dad took me to church every Sunday and to socialize with people. I lived

> in my house for 41 years with my parents until they passed away then I move

> to new town home to be independent. I live by my sister and my nephew with

> his wife so I visit them sometimes. finally I got the job at Kruppp Robins

> for ten years and I really enjoyed it. they are engineers and I do assisting

> like stock the kitchen, do copy work, scanning, and shredding. I work part

> time, four days a week, and two and half hours a day. Mostly I do my own

> thing like working on my computer and reading a book if they don't have work

> for me, and that's fine with me. My parents really helped a lot to find the

> job when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few who very

> understanding that I'm different. I used to be self conscious about how I

> look, how skinny I was and I didn't like my shoulders much. There weren't

> very many CHARGE around and my family used to tell me it was very rare to

> get CHARGE and I thought maybe very few people around this world had

> it.Also I have been around normal people for a long time. Sometime I get

> irritated and want to get good shape like they have. I remember my few

> friends and family told me to be yourself. If they aren't friendly that is

> their problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now if I can

> remember. Well maybe not that funny. I think when I was a kid when I had

> lack of balance and I didn't pay attention to the table and I fell on the

> edge of table and hit my forehead very badly and the blood stared to flow. I

> think my sister took me to see my mom and she was panicked so I went to the

> doctor to have stitches. Ouch! sometime, I tripped down the stairs but it is

> miracle that I'm okay. When I was nine I would like to go the pool to

> Eisenhower so I asked my mom if I can go to the pool but I wasn't paying

> attention to what she was saying when she was busy doing something. I

> thought she said go ahead, but really she said wait for me then we go. How

> stupid I was, here we go. I walked down to the busy street about ten minutes

> from my house and good thing the street wasn't real busy at that time. it

> seems like I know where to go, but a lady with her kids stopped me and

> wondered why I was walking alone. I don't remember if I told her I wanted to

> go to pool. she thought I might be lost, so she took me to the police

> station if I was lost. So a funny thing was that I climbed up and looked at

> the gerbils in the cage then I fell backward. Then the cage fell with me and

> the gerbils were on my face so I got some scratches, but not that bad. I'm

> sure my parents were panicked to know where I was. Finally the police took

> me home and my mom was very furious so I was grounded. I remember I spent

> the night with my cousins and we had fun playing outside at night. Well they

> could see and they pulled me to run and I smash into the mail box because I

> couldn't see. they forgot I couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring and I was

> like uh, I do have elf ears like those. Sometime I tease because I walk like

> a penguin maybe that's because I like penguins and they are cute and that is

> that way I walk. I told my family I walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book (Harry Potter

> book series is my favorite). jigsaw puzzles and movies (Matrix movies and

> Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

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Michele,

I would like to personally thank you for your wonderful story. My son also is

mild as you put it. I do hope you realize how very special your parents were.

I wish they were still around to tell their side of your lovely story. As a

parent I am amazed at what they were able to do with such little help.

Again thank you!

, Randy & Garland Goodwin

---- michele sinopoli sinopoli74@...> wrote:

=============

Hi everybody,

Some of you might be eager to know how I live through challenges with mild

CHARGE. I'll try to remember from the beginning to now.

I remember my parents told me, before I was born my mother's water broke and

they had to rush to the hospital, and they said the cord was around me or

whatever it was. After I was delivered, the doctors noticed I had trouble

breathing and didn't know what was the matter so they called it birth defect.

They also put me in intensive care and I have been to the hospital several

times since to see if there is any thing wrong with me, they found out I have

one kidney and a breathing problem. That was all they knew and they didn't say

anything about my deafness. it was in 1965. I didn't asked my parents a lot of

questions about being born with CHARGE. I knew I was different with

vision/hearing impairment, elf shape ears, loop shoulders, low muscles tone, one

kidney, swallowing problem, breathing problem, late hormone developmrnt, lack of

balance, small mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry me and I

would be fine. I noticed my right side was worse side than the left side, my

right eye has tunnel vision but I can see distnce. My right ear is very bad, I

only can hear the high fremqiecy, I have one very small kidney is not working,

but my left side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one good kidney. My

parents fed me with a little dropper and it too me a long time finish it. My

poor parents , I might made them exhausted, I didn't have a feeding tube like

many CHARGE babies.

I've had four nose operations. My first, second, and fourth weren't doing

very well, the doctors just tried to straighten my nose and widen nostrils to

breath through. The third one was the best. The doctor from Colorado Springs

took out all the bones and tissues in the back of my sinus and top of the roof

of my mouth then I can breath better. it was because I couldn't breath through

sinus and mucus kept running down forward instead of back of my sinus.

I didn't start walking until I was three. I started wearing hearing aids and

glasses at four, and went to kindergarden at seven. how did do I learn to start

walking? I think my parents told me when I had trouble with balance and kept

falling on something on my head I had to wear helmet for a while until I got

better. I don't know about glasses. I think they noticed I couldn't see well so

I went to eye doctor to get my new glasses and hearing aids. I'm not sure I

remember what mom said, I went to mentally handicapped school when I was three

or four and it wasn't right for me and my parents didn't like the idea to think

I'm mentally retarded and so I guess the doctors were wrong; I went back to

audiologists to test my hearing again and found out I couldn't hear until I wear

hearing aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at eight and I

did it real well with deaf group. I went to oral school until eighth grade. I

wanted to learn sign so I could communicate with my few deaf friends who sign

I have a lot of support from my big family I go everywhere with them to

vacations, to the movies, go out eat, go to church and fishing camp and

baseball. Some of my friends went to Lion Camp and church activity after I

graduated from high shool. I kept myself busy mostly with my mom to bowling,

lunch, golf, and gambling with her friends, I went with Mom to grocery shopping,

Meals and Wheels for senior citizens. I miss my parents the most, my dad took me

to church every Sunday and to socialize with people. I lived in my house for 41

years with my parents until they passed away then I move to new town home to be

independent. I live by my sister and my nephew with his wife so I visit them

sometimes. finally I got the job at Kruppp Robins for ten years and I really

enjoyed it. they are engineers and I do assisting like stock the kitchen, do

copy work, scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my computer and

reading a book if they don't have work for me, and that's fine with me. My

parents really helped a lot to find the job when I wasn't crazy about working.

Making friends wasn't easy like normal kids. I made just a few who very

understanding that I'm different. I used to be self conscious about how I look,

how skinny I was and I didn't like my shoulders much. There weren't very many

CHARGE around and my family used to tell me it was very rare to get CHARGE and I

thought maybe very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to get good

shape like they have. I remember my few friends and family told me to be

yourself. If they aren't friendly that is their problem so I got better not to

worry what people think.

I did funny things sometime from when I was a toddle until now if I can

remember. Well maybe not that funny. I think when I was a kid when I had lack of

balance and I didn't pay attention to the table and I fell on the edge of table

and hit my forehead very badly and the blood stared to flow. I think my sister

took me to see my mom and she was panicked so I went to the doctor to have

stitches. Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I asked my

mom if I can go to the pool but I wasn't paying attention to what she was saying

when she was busy doing something. I thought she said go ahead, but really she

said wait for me then we go. How stupid I was, here we go. I walked down to the

busy street about ten minutes from my house and good thing the street wasn't

real busy at that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't remember if I told

her I wanted to go to pool. she thought I might be lost, so she took me to the

police station if I was lost. So a funny thing was that I climbed up and looked

at the gerbils in the cage then I fell backward. Then the cage fell with me and

the gerbils were on my face so I got some scratches, but not that bad. I'm sure

my parents were panicked to know where I was. Finally the police took me home

and my mom was very furious so I was grounded. I remember I spent the night with

my cousins and we had fun playing outside at night. Well they could see and they

pulled me to run and I smash into the mail box because I couldn't see. they

forgot I couldn't see very well at night.

Sometime I joke about myself like when I saw Lord Of The Ring and I was like

uh, I do have elf ears like those. Sometime I tease because I walk like a

penguin maybe that's because I like penguins and they are cute and that is that

way I walk. I told my family I walk like I'm drunk, oh what the heck.

I enjoy bowling, gambling, relaxing at home, reading a book (Harry Potter

book series is my favorite). jigsaw puzzles and movies (Matrix movies and Harry

Potter movies).

There you go,

Hope you like my story

Michele S.

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Share on other sites

Guest guest

sure you are welcome, i'm glad you like it. michele s.

Re: Fw: introduce myself as charge

Michele,

I would like to personally thank you for your wonderful story. My son also is

mild as you put it. I do hope you realize how very special your parents were. I

wish they were still around to tell their side of your lovely story. As a parent

I am amazed at what they were able to do with such little help.

Again thank you!

, Randy & Garland Goodwin

---- michele sinopoli sinopoli74@...> wrote:

=============

Hi everybody,

Some of you might be eager to know how I live through challenges with mild

CHARGE. I'll try to remember from the beginning to now.

I remember my parents told me, before I was born my mother's water broke and

they had to rush to the hospital, and they said the cord was around me or

whatever it was. After I was delivered, the doctors noticed I had trouble

breathing and didn't know what was the matter so they called it birth defect.

They also put me in intensive care and I have been to the hospital several times

since to see if there is any thing wrong with me, they found out I have one

kidney and a breathing problem. That was all they knew and they didn't say

anything about my deafness. it was in 1965. I didn't asked my parents a lot of

questions about being born with CHARGE. I knew I was different with

vision/hearing impairment, elf shape ears, loop shoulders, low muscles tone, one

kidney, swallowing problem, breathing problem, late hormone developmrnt, lack of

balance, small mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry me and I

would be fine. I noticed my right side was worse side than the left side, my

right eye has tunnel vision but I can see distnce. My right ear is very bad, I

only can hear the high fremqiecy, I have one very small kidney is not working,

but my left side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one good kidney. My

parents fed me with a little dropper and it too me a long time finish it. My

poor parents , I might made them exhausted, I didn't have a feeding tube like

many CHARGE babies.

I've had four nose operations. My first, second, and fourth weren't doing very

well, the doctors just tried to straighten my nose and widen nostrils to breath

through. The third one was the best. The doctor from Colorado Springs took out

all the bones and tissues in the back of my sinus and top of the roof of my

mouth then I can breath better. it was because I couldn't breath through sinus

and mucus kept running down forward instead of back of my sinus.

I didn't start walking until I was three. I started wearing hearing aids and

glasses at four, and went to kindergarden at seven. how did do I learn to start

walking? I think my parents told me when I had trouble with balance and kept

falling on something on my head I had to wear helmet for a while until I got

better. I don't know about glasses. I think they noticed I couldn't see well so

I went to eye doctor to get my new glasses and hearing aids. I'm not sure I

remember what mom said, I went to mentally handicapped school when I was three

or four and it wasn't right for me and my parents didn't like the idea to think

I'm mentally retarded and so I guess the doctors were wrong; I went back to

audiologists to test my hearing again and found out I couldn't hear until I wear

hearing aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at eight and I

did it real well with deaf group. I went to oral school until eighth grade. I

wanted to learn sign so I could communicate with my few deaf friends who sign

I have a lot of support from my big family I go everywhere with them to

vacations, to the movies, go out eat, go to church and fishing camp and

baseball. Some of my friends went to Lion Camp and church activity after I

graduated from high shool. I kept myself busy mostly with my mom to bowling,

lunch, golf, and gambling with her friends, I went with Mom to grocery shopping,

Meals and Wheels for senior citizens. I miss my parents the most, my dad took me

to church every Sunday and to socialize with people. I lived in my house for 41

years with my parents until they passed away then I move to new town home to be

independent. I live by my sister and my nephew with his wife so I visit them

sometimes. finally I got the job at Kruppp Robins for ten years and I really

enjoyed it. they are engineers and I do assisting like stock the kitchen, do

copy work, scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my computer and

reading a book if they don't have work for me, and that's fine with me. My

parents really helped a lot to find the job when I wasn't crazy about working.

Making friends wasn't easy like normal kids. I made just a few who very

understanding that I'm different. I used to be self conscious about how I look,

how skinny I was and I didn't like my shoulders much. There weren't very many

CHARGE around and my family used to tell me it was very rare to get CHARGE and I

thought maybe very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to get good

shape like they have. I remember my few friends and family told me to be

yourself. If they aren't friendly that is their problem so I got better not to

worry what people think.

I did funny things sometime from when I was a toddle until now if I can

remember. Well maybe not that funny. I think when I was a kid when I had lack of

balance and I didn't pay attention to the table and I fell on the edge of table

and hit my forehead very badly and the blood stared to flow. I think my sister

took me to see my mom and she was panicked so I went to the doctor to have

stitches. Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I asked my

mom if I can go to the pool but I wasn't paying attention to what she was saying

when she was busy doing something. I thought she said go ahead, but really she

said wait for me then we go. How stupid I was, here we go. I walked down to the

busy street about ten minutes from my house and good thing the street wasn't

real busy at that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't remember if I told

her I wanted to go to pool. she thought I might be lost, so she took me to the

police station if I was lost. So a funny thing was that I climbed up and looked

at the gerbils in the cage then I fell backward. Then the cage fell with me and

the gerbils were on my face so I got some scratches, but not that bad. I'm sure

my parents were panicked to know where I was. Finally the police took me home

and my mom was very furious so I was grounded. I remember I spent the night with

my cousins and we had fun playing outside at night. Well they could see and they

pulled me to run and I smash into the mail box because I couldn't see. they

forgot I couldn't see very well at night.

Sometime I joke about myself like when I saw Lord Of The Ring and I was like

uh, I do have elf ears like those. Sometime I tease because I walk like a

penguin maybe that's because I like penguins and they are cute and that is that

way I walk. I told my family I walk like I'm drunk, oh what the heck.

I enjoy bowling, gambling, relaxing at home, reading a book (Harry Potter book

series is my favorite). jigsaw puzzles and movies (Matrix movies and Harry

Potter movies).

There you go,

Hope you like my story

Michele S.

Link to comment
Share on other sites

Guest guest

sure you are welcome, i'm glad you like it. michele s.

Re: Fw: introduce myself as charge

Michele,

I would like to personally thank you for your wonderful story. My son also is

mild as you put it. I do hope you realize how very special your parents were. I

wish they were still around to tell their side of your lovely story. As a parent

I am amazed at what they were able to do with such little help.

Again thank you!

, Randy & Garland Goodwin

---- michele sinopoli sinopoli74@...> wrote:

=============

Hi everybody,

Some of you might be eager to know how I live through challenges with mild

CHARGE. I'll try to remember from the beginning to now.

I remember my parents told me, before I was born my mother's water broke and

they had to rush to the hospital, and they said the cord was around me or

whatever it was. After I was delivered, the doctors noticed I had trouble

breathing and didn't know what was the matter so they called it birth defect.

They also put me in intensive care and I have been to the hospital several times

since to see if there is any thing wrong with me, they found out I have one

kidney and a breathing problem. That was all they knew and they didn't say

anything about my deafness. it was in 1965. I didn't asked my parents a lot of

questions about being born with CHARGE. I knew I was different with

vision/hearing impairment, elf shape ears, loop shoulders, low muscles tone, one

kidney, swallowing problem, breathing problem, late hormone developmrnt, lack of

balance, small mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry me and I

would be fine. I noticed my right side was worse side than the left side, my

right eye has tunnel vision but I can see distnce. My right ear is very bad, I

only can hear the high fremqiecy, I have one very small kidney is not working,

but my left side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one good kidney. My

parents fed me with a little dropper and it too me a long time finish it. My

poor parents , I might made them exhausted, I didn't have a feeding tube like

many CHARGE babies.

I've had four nose operations. My first, second, and fourth weren't doing very

well, the doctors just tried to straighten my nose and widen nostrils to breath

through. The third one was the best. The doctor from Colorado Springs took out

all the bones and tissues in the back of my sinus and top of the roof of my

mouth then I can breath better. it was because I couldn't breath through sinus

and mucus kept running down forward instead of back of my sinus.

I didn't start walking until I was three. I started wearing hearing aids and

glasses at four, and went to kindergarden at seven. how did do I learn to start

walking? I think my parents told me when I had trouble with balance and kept

falling on something on my head I had to wear helmet for a while until I got

better. I don't know about glasses. I think they noticed I couldn't see well so

I went to eye doctor to get my new glasses and hearing aids. I'm not sure I

remember what mom said, I went to mentally handicapped school when I was three

or four and it wasn't right for me and my parents didn't like the idea to think

I'm mentally retarded and so I guess the doctors were wrong; I went back to

audiologists to test my hearing again and found out I couldn't hear until I wear

hearing aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at eight and I

did it real well with deaf group. I went to oral school until eighth grade. I

wanted to learn sign so I could communicate with my few deaf friends who sign

I have a lot of support from my big family I go everywhere with them to

vacations, to the movies, go out eat, go to church and fishing camp and

baseball. Some of my friends went to Lion Camp and church activity after I

graduated from high shool. I kept myself busy mostly with my mom to bowling,

lunch, golf, and gambling with her friends, I went with Mom to grocery shopping,

Meals and Wheels for senior citizens. I miss my parents the most, my dad took me

to church every Sunday and to socialize with people. I lived in my house for 41

years with my parents until they passed away then I move to new town home to be

independent. I live by my sister and my nephew with his wife so I visit them

sometimes. finally I got the job at Kruppp Robins for ten years and I really

enjoyed it. they are engineers and I do assisting like stock the kitchen, do

copy work, scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my computer and

reading a book if they don't have work for me, and that's fine with me. My

parents really helped a lot to find the job when I wasn't crazy about working.

Making friends wasn't easy like normal kids. I made just a few who very

understanding that I'm different. I used to be self conscious about how I look,

how skinny I was and I didn't like my shoulders much. There weren't very many

CHARGE around and my family used to tell me it was very rare to get CHARGE and I

thought maybe very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to get good

shape like they have. I remember my few friends and family told me to be

yourself. If they aren't friendly that is their problem so I got better not to

worry what people think.

I did funny things sometime from when I was a toddle until now if I can

remember. Well maybe not that funny. I think when I was a kid when I had lack of

balance and I didn't pay attention to the table and I fell on the edge of table

and hit my forehead very badly and the blood stared to flow. I think my sister

took me to see my mom and she was panicked so I went to the doctor to have

stitches. Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I asked my

mom if I can go to the pool but I wasn't paying attention to what she was saying

when she was busy doing something. I thought she said go ahead, but really she

said wait for me then we go. How stupid I was, here we go. I walked down to the

busy street about ten minutes from my house and good thing the street wasn't

real busy at that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't remember if I told

her I wanted to go to pool. she thought I might be lost, so she took me to the

police station if I was lost. So a funny thing was that I climbed up and looked

at the gerbils in the cage then I fell backward. Then the cage fell with me and

the gerbils were on my face so I got some scratches, but not that bad. I'm sure

my parents were panicked to know where I was. Finally the police took me home

and my mom was very furious so I was grounded. I remember I spent the night with

my cousins and we had fun playing outside at night. Well they could see and they

pulled me to run and I smash into the mail box because I couldn't see. they

forgot I couldn't see very well at night.

Sometime I joke about myself like when I saw Lord Of The Ring and I was like

uh, I do have elf ears like those. Sometime I tease because I walk like a

penguin maybe that's because I like penguins and they are cute and that is that

way I walk. I told my family I walk like I'm drunk, oh what the heck.

I enjoy bowling, gambling, relaxing at home, reading a book (Harry Potter book

series is my favorite). jigsaw puzzles and movies (Matrix movies and Harry

Potter movies).

There you go,

Hope you like my story

Michele S.

Link to comment
Share on other sites

Guest guest

sure thanks i'm glad you enjoyed it. i didn't really go to lion camp after i

graduate from high school because i forgot to put period before then captital

letter on after, my mistake. michele s.

Re: Fw: introduce myself as charge

inspirational for those of us with little ones, to know you are so well,

active and leading a normal life.

How difficult it must have been for your parents and you all those years

ago, when nothing was known about charge.

Thank you for sharing your story I thoroughly enjoyed reading it.

love Les x

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges with mild

> CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's water broke

> and they had to rush to the hospital, and they said the cord was around me

> or whatever it was. After I was delivered, the doctors noticed I had trouble

> breathing and didn't know what was the matter so they called it birth

> defect. They also put me in intensive care and I have been to the hospital

> several times since to see if there is any thing wrong with me, they found

> out I have one kidney and a breathing problem. That was all they knew and

> they didn't say anything about my deafness. it was in 1965. I didn't asked

> my parents a lot of questions about being born with CHARGE. I knew I was

> different with vision/hearing impairment, elf shape ears, loop shoulders,

> low muscles tone, one kidney, swallowing problem, breathing problem, late

> hormone developmrnt, lack of balance, small mouth and lack of smell. I think

> that is all. well as you know my parents were very protective of me because

> they did't want to worry me and I would be fine. I noticed my right side was

> worse side than the left side, my right eye has tunnel vision but I can see

> distnce. My right ear is very bad, I only can hear the high fremqiecy, I

> have one very small kidney is not working, but my left side ear is very good

> and has moderate hearing loss. My left eye is good I can see the distance,

> but still poor eyesight. i have one good kidney. My parents fed me with a

> little dropper and it too me a long time finish it. My poor parents , I

> might made them exhausted, I didn't have a feeding tube like many CHARGE

> babies.

>

> I've had four nose operations. My first, second, and fourth weren't doing

> very well, the doctors just tried to straighten my nose and widen nostrils

> to breath through. The third one was the best. The doctor from Colorado

> Springs took out all the bones and tissues in the back of my sinus and top

> of the roof of my mouth then I can breath better. it was because I couldn't

> breath through sinus and mucus kept running down forward instead of back of

> my sinus.

>

> I didn't start walking until I was three. I started wearing hearing aids

> and glasses at four, and went to kindergarden at seven. how did do I learn

> to start walking? I think my parents told me when I had trouble with balance

> and kept falling on something on my head I had to wear helmet for a while

> until I got better. I don't know about glasses. I think they noticed I

> couldn't see well so I went to eye doctor to get my new glasses and hearing

> aids. I'm not sure I remember what mom said, I went to mentally handicapped

> school when I was three or four and it wasn't right for me and my parents

> didn't like the idea to think I'm mentally retarded and so I guess the

> doctors were wrong; I went back to audiologists to test my hearing again and

> found out I couldn't hear until I wear hearing aids. I went to preschool or

> kindergarten with regular kids then I started mainstream with hearing and

> deaf. I start in first grade at eight and I did it real well with deaf

> group. I went to oral school until eighth grade. I wanted to learn sign so I

> could communicate with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere with them to

> vacations, to the movies, go out eat, go to church and fishing camp and

> baseball. Some of my friends went to Lion Camp and church activity after I

> graduated from high shool. I kept myself busy mostly with my mom to bowling,

> lunch, golf, and gambling with her friends, I went with Mom to grocery

> shopping, Meals and Wheels for senior citizens. I miss my parents the most,

> my dad took me to church every Sunday and to socialize with people. I lived

> in my house for 41 years with my parents until they passed away then I move

> to new town home to be independent. I live by my sister and my nephew with

> his wife so I visit them sometimes. finally I got the job at Kruppp Robins

> for ten years and I really enjoyed it. they are engineers and I do assisting

> like stock the kitchen, do copy work, scanning, and shredding. I work part

> time, four days a week, and two and half hours a day. Mostly I do my own

> thing like working on my computer and reading a book if they don't have work

> for me, and that's fine with me. My parents really helped a lot to find the

> job when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few who very

> understanding that I'm different. I used to be self conscious about how I

> look, how skinny I was and I didn't like my shoulders much. There weren't

> very many CHARGE around and my family used to tell me it was very rare to

> get CHARGE and I thought maybe very few people around this world had

> it.Also I have been around normal people for a long time. Sometime I get

> irritated and want to get good shape like they have. I remember my few

> friends and family told me to be yourself. If they aren't friendly that is

> their problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now if I can

> remember. Well maybe not that funny. I think when I was a kid when I had

> lack of balance and I didn't pay attention to the table and I fell on the

> edge of table and hit my forehead very badly and the blood stared to flow. I

> think my sister took me to see my mom and she was panicked so I went to the

> doctor to have stitches. Ouch! sometime, I tripped down the stairs but it is

> miracle that I'm okay. When I was nine I would like to go the pool to

> Eisenhower so I asked my mom if I can go to the pool but I wasn't paying

> attention to what she was saying when she was busy doing something. I

> thought she said go ahead, but really she said wait for me then we go. How

> stupid I was, here we go. I walked down to the busy street about ten minutes

> from my house and good thing the street wasn't real busy at that time. it

> seems like I know where to go, but a lady with her kids stopped me and

> wondered why I was walking alone. I don't remember if I told her I wanted to

> go to pool. she thought I might be lost, so she took me to the police

> station if I was lost. So a funny thing was that I climbed up and looked at

> the gerbils in the cage then I fell backward. Then the cage fell with me and

> the gerbils were on my face so I got some scratches, but not that bad. I'm

> sure my parents were panicked to know where I was. Finally the police took

> me home and my mom was very furious so I was grounded. I remember I spent

> the night with my cousins and we had fun playing outside at night. Well they

> could see and they pulled me to run and I smash into the mail box because I

> couldn't see. they forgot I couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring and I was

> like uh, I do have elf ears like those. Sometime I tease because I walk like

> a penguin maybe that's because I like penguins and they are cute and that is

> that way I walk. I told my family I walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book (Harry Potter

> book series is my favorite). jigsaw puzzles and movies (Matrix movies and

> Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

Link to comment
Share on other sites

Guest guest

sure thanks i'm glad you enjoyed it. i didn't really go to lion camp after i

graduate from high school because i forgot to put period before then captital

letter on after, my mistake. michele s.

Re: Fw: introduce myself as charge

inspirational for those of us with little ones, to know you are so well,

active and leading a normal life.

How difficult it must have been for your parents and you all those years

ago, when nothing was known about charge.

Thank you for sharing your story I thoroughly enjoyed reading it.

love Les x

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges with mild

> CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's water broke

> and they had to rush to the hospital, and they said the cord was around me

> or whatever it was. After I was delivered, the doctors noticed I had trouble

> breathing and didn't know what was the matter so they called it birth

> defect. They also put me in intensive care and I have been to the hospital

> several times since to see if there is any thing wrong with me, they found

> out I have one kidney and a breathing problem. That was all they knew and

> they didn't say anything about my deafness. it was in 1965. I didn't asked

> my parents a lot of questions about being born with CHARGE. I knew I was

> different with vision/hearing impairment, elf shape ears, loop shoulders,

> low muscles tone, one kidney, swallowing problem, breathing problem, late

> hormone developmrnt, lack of balance, small mouth and lack of smell. I think

> that is all. well as you know my parents were very protective of me because

> they did't want to worry me and I would be fine. I noticed my right side was

> worse side than the left side, my right eye has tunnel vision but I can see

> distnce. My right ear is very bad, I only can hear the high fremqiecy, I

> have one very small kidney is not working, but my left side ear is very good

> and has moderate hearing loss. My left eye is good I can see the distance,

> but still poor eyesight. i have one good kidney. My parents fed me with a

> little dropper and it too me a long time finish it. My poor parents , I

> might made them exhausted, I didn't have a feeding tube like many CHARGE

> babies.

>

> I've had four nose operations. My first, second, and fourth weren't doing

> very well, the doctors just tried to straighten my nose and widen nostrils

> to breath through. The third one was the best. The doctor from Colorado

> Springs took out all the bones and tissues in the back of my sinus and top

> of the roof of my mouth then I can breath better. it was because I couldn't

> breath through sinus and mucus kept running down forward instead of back of

> my sinus.

>

> I didn't start walking until I was three. I started wearing hearing aids

> and glasses at four, and went to kindergarden at seven. how did do I learn

> to start walking? I think my parents told me when I had trouble with balance

> and kept falling on something on my head I had to wear helmet for a while

> until I got better. I don't know about glasses. I think they noticed I

> couldn't see well so I went to eye doctor to get my new glasses and hearing

> aids. I'm not sure I remember what mom said, I went to mentally handicapped

> school when I was three or four and it wasn't right for me and my parents

> didn't like the idea to think I'm mentally retarded and so I guess the

> doctors were wrong; I went back to audiologists to test my hearing again and

> found out I couldn't hear until I wear hearing aids. I went to preschool or

> kindergarten with regular kids then I started mainstream with hearing and

> deaf. I start in first grade at eight and I did it real well with deaf

> group. I went to oral school until eighth grade. I wanted to learn sign so I

> could communicate with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere with them to

> vacations, to the movies, go out eat, go to church and fishing camp and

> baseball. Some of my friends went to Lion Camp and church activity after I

> graduated from high shool. I kept myself busy mostly with my mom to bowling,

> lunch, golf, and gambling with her friends, I went with Mom to grocery

> shopping, Meals and Wheels for senior citizens. I miss my parents the most,

> my dad took me to church every Sunday and to socialize with people. I lived

> in my house for 41 years with my parents until they passed away then I move

> to new town home to be independent. I live by my sister and my nephew with

> his wife so I visit them sometimes. finally I got the job at Kruppp Robins

> for ten years and I really enjoyed it. they are engineers and I do assisting

> like stock the kitchen, do copy work, scanning, and shredding. I work part

> time, four days a week, and two and half hours a day. Mostly I do my own

> thing like working on my computer and reading a book if they don't have work

> for me, and that's fine with me. My parents really helped a lot to find the

> job when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few who very

> understanding that I'm different. I used to be self conscious about how I

> look, how skinny I was and I didn't like my shoulders much. There weren't

> very many CHARGE around and my family used to tell me it was very rare to

> get CHARGE and I thought maybe very few people around this world had

> it.Also I have been around normal people for a long time. Sometime I get

> irritated and want to get good shape like they have. I remember my few

> friends and family told me to be yourself. If they aren't friendly that is

> their problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now if I can

> remember. Well maybe not that funny. I think when I was a kid when I had

> lack of balance and I didn't pay attention to the table and I fell on the

> edge of table and hit my forehead very badly and the blood stared to flow. I

> think my sister took me to see my mom and she was panicked so I went to the

> doctor to have stitches. Ouch! sometime, I tripped down the stairs but it is

> miracle that I'm okay. When I was nine I would like to go the pool to

> Eisenhower so I asked my mom if I can go to the pool but I wasn't paying

> attention to what she was saying when she was busy doing something. I

> thought she said go ahead, but really she said wait for me then we go. How

> stupid I was, here we go. I walked down to the busy street about ten minutes

> from my house and good thing the street wasn't real busy at that time. it

> seems like I know where to go, but a lady with her kids stopped me and

> wondered why I was walking alone. I don't remember if I told her I wanted to

> go to pool. she thought I might be lost, so she took me to the police

> station if I was lost. So a funny thing was that I climbed up and looked at

> the gerbils in the cage then I fell backward. Then the cage fell with me and

> the gerbils were on my face so I got some scratches, but not that bad. I'm

> sure my parents were panicked to know where I was. Finally the police took

> me home and my mom was very furious so I was grounded. I remember I spent

> the night with my cousins and we had fun playing outside at night. Well they

> could see and they pulled me to run and I smash into the mail box because I

> couldn't see. they forgot I couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring and I was

> like uh, I do have elf ears like those. Sometime I tease because I walk like

> a penguin maybe that's because I like penguins and they are cute and that is

> that way I walk. I told my family I walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book (Harry Potter

> book series is my favorite). jigsaw puzzles and movies (Matrix movies and

> Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

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Share on other sites

Guest guest

thanks and welcome linda, i'm glad you enjoyed it. michele s

Re: Fw: introduce myself as charge

Michele,

Thank you so much for writing out your incredible story. You show us all how

to

be fine and have Charge at the same time, just as it should be and we always

hope

it to be.

Your sense of humor shines brightly. I believe I see your parents' love and

personality

there.

So, how do you feel about gerbils these days-lol.

I believe you have found the secret of life-to enjoy it.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

Link to comment
Share on other sites

Guest guest

thanks and welcome linda, i'm glad you enjoyed it. michele s

Re: Fw: introduce myself as charge

Michele,

Thank you so much for writing out your incredible story. You show us all how

to

be fine and have Charge at the same time, just as it should be and we always

hope

it to be.

Your sense of humor shines brightly. I believe I see your parents' love and

personality

there.

So, how do you feel about gerbils these days-lol.

I believe you have found the secret of life-to enjoy it.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

Link to comment
Share on other sites

Guest guest

thanks and welcome linda, i'm glad you enjoyed it. michele s

Re: Fw: introduce myself as charge

Michele,

Thank you so much for writing out your incredible story. You show us all how

to

be fine and have Charge at the same time, just as it should be and we always

hope

it to be.

Your sense of humor shines brightly. I believe I see your parents' love and

personality

there.

So, how do you feel about gerbils these days-lol.

I believe you have found the secret of life-to enjoy it.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

Link to comment
Share on other sites

Guest guest

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges

with mild CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's

water broke and they had to rush to the hospital, and they said the

cord was around me or whatever it was. After I was delivered, the

doctors noticed I had trouble breathing and didn't know what was

the matter so they called it birth defect. They also put me in

intensive care and I have been to the hospital several times since

to see if there is any thing wrong with me, they found out I have

one kidney and a breathing problem. That was all they knew and they

didn't say anything about my deafness. it was in 1965. I didn't

asked my parents a lot of questions about being born with CHARGE. I

knew I was different with vision/hearing impairment, elf shape ears,

loop shoulders, low muscles tone, one kidney, swallowing problem,

breathing problem, late hormone developmrnt, lack of balance, small

mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry

me and I would be fine. I noticed my right side was worse side than

the left side, my right eye has tunnel vision but I can see

distnce. My right ear is very bad, I only can hear the high

fremqiecy, I have one very small kidney is not working, but my left

side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one

good kidney. My parents fed me with a little dropper and it too me a

long time finish it. My poor parents , I might made them exhausted,

I didn't have a feeding tube like many CHARGE babies.

>

> I've had four nose operations. My first, second, and fourth

weren't doing very well, the doctors just tried to straighten my

nose and widen nostrils to breath through. The third one was the

best. The doctor from Colorado Springs took out all the bones and

tissues in the back of my sinus and top of the roof of my mouth then

I can breath better. it was because I couldn't breath through sinus

and mucus kept running down forward instead of back of my sinus.

>

> I didn't start walking until I was three. I started wearing

hearing aids and glasses at four, and went to kindergarden at seven.

how did do I learn to start walking? I think my parents told me

when I had trouble with balance and kept falling on something on my

head I had to wear helmet for a while until I got better. I don't

know about glasses. I think they noticed I couldn't see well so I

went to eye doctor to get my new glasses and hearing aids. I'm not

sure I remember what mom said, I went to mentally handicapped school

when I was three or four and it wasn't right for me and my parents

didn't like the idea to think I'm mentally retarded and so I guess

the doctors were wrong; I went back to audiologists to test my

hearing again and found out I couldn't hear until I wear hearing

aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at

eight and I did it real well with deaf group. I went to oral school

until eighth grade. I wanted to learn sign so I could communicate

with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere

with them to vacations, to the movies, go out eat, go to church and

fishing camp and baseball. Some of my friends went to Lion Camp and

church activity after I graduated from high shool. I kept myself

busy mostly with my mom to bowling, lunch, golf, and gambling with

her friends, I went with Mom to grocery shopping, Meals and Wheels

for senior citizens. I miss my parents the most, my dad took me to

church every Sunday and to socialize with people. I lived in my

house for 41 years with my parents until they passed away then I

move to new town home to be independent. I live by my sister and my

nephew with his wife so I visit them sometimes. finally I got the

job at Kruppp Robins for ten years and I really enjoyed it. they are

engineers and I do assisting like stock the kitchen, do copy work,

scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my

computer and reading a book if they don't have work for me, and

that's fine with me. My parents really helped a lot to find the job

when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few

who very understanding that I'm different. I used to be self

conscious about how I look, how skinny I was and I didn't like my

shoulders much. There weren't very many CHARGE around and my family

used to tell me it was very rare to get CHARGE and I thought maybe

very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to

get good shape like they have. I remember my few friends and family

told me to be yourself. If they aren't friendly that is their

problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now

if I can remember. Well maybe not that funny. I think when I was a

kid when I had lack of balance and I didn't pay attention to the

table and I fell on the edge of table and hit my forehead very badly

and the blood stared to flow. I think my sister took me to see my

mom and she was panicked so I went to the doctor to have stitches.

Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I

asked my mom if I can go to the pool but I wasn't paying attention

to what she was saying when she was busy doing something. I thought

she said go ahead, but really she said wait for me then we go. How

stupid I was, here we go. I walked down to the busy street about ten

minutes from my house and good thing the street wasn't real busy at

that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't

remember if I told her I wanted to go to pool. she thought I might

be lost, so she took me to the police station if I was lost. So a

funny thing was that I climbed up and looked at the gerbils in the

cage then I fell backward. Then the cage fell with me and the

gerbils were on my face so I got some scratches, but not that bad.

I'm sure my parents were panicked to know where I was. Finally the

police took me home and my mom was very furious so I was grounded. I

remember I spent the night with my cousins and we had fun playing

outside at night. Well they could see and they pulled me to run and

I smash into the mail box because I couldn't see. they forgot I

couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring

and I was like uh, I do have elf ears like those. Sometime I tease

because I walk like a penguin maybe that's because I like penguins

and they are cute and that is that way I walk. I told my family I

walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book

(Harry Potter book series is my favorite). jigsaw puzzles and movies

(Matrix movies and Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

Link to comment
Share on other sites

Guest guest

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges

with mild CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's

water broke and they had to rush to the hospital, and they said the

cord was around me or whatever it was. After I was delivered, the

doctors noticed I had trouble breathing and didn't know what was

the matter so they called it birth defect. They also put me in

intensive care and I have been to the hospital several times since

to see if there is any thing wrong with me, they found out I have

one kidney and a breathing problem. That was all they knew and they

didn't say anything about my deafness. it was in 1965. I didn't

asked my parents a lot of questions about being born with CHARGE. I

knew I was different with vision/hearing impairment, elf shape ears,

loop shoulders, low muscles tone, one kidney, swallowing problem,

breathing problem, late hormone developmrnt, lack of balance, small

mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry

me and I would be fine. I noticed my right side was worse side than

the left side, my right eye has tunnel vision but I can see

distnce. My right ear is very bad, I only can hear the high

fremqiecy, I have one very small kidney is not working, but my left

side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one

good kidney. My parents fed me with a little dropper and it too me a

long time finish it. My poor parents , I might made them exhausted,

I didn't have a feeding tube like many CHARGE babies.

>

> I've had four nose operations. My first, second, and fourth

weren't doing very well, the doctors just tried to straighten my

nose and widen nostrils to breath through. The third one was the

best. The doctor from Colorado Springs took out all the bones and

tissues in the back of my sinus and top of the roof of my mouth then

I can breath better. it was because I couldn't breath through sinus

and mucus kept running down forward instead of back of my sinus.

>

> I didn't start walking until I was three. I started wearing

hearing aids and glasses at four, and went to kindergarden at seven.

how did do I learn to start walking? I think my parents told me

when I had trouble with balance and kept falling on something on my

head I had to wear helmet for a while until I got better. I don't

know about glasses. I think they noticed I couldn't see well so I

went to eye doctor to get my new glasses and hearing aids. I'm not

sure I remember what mom said, I went to mentally handicapped school

when I was three or four and it wasn't right for me and my parents

didn't like the idea to think I'm mentally retarded and so I guess

the doctors were wrong; I went back to audiologists to test my

hearing again and found out I couldn't hear until I wear hearing

aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at

eight and I did it real well with deaf group. I went to oral school

until eighth grade. I wanted to learn sign so I could communicate

with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere

with them to vacations, to the movies, go out eat, go to church and

fishing camp and baseball. Some of my friends went to Lion Camp and

church activity after I graduated from high shool. I kept myself

busy mostly with my mom to bowling, lunch, golf, and gambling with

her friends, I went with Mom to grocery shopping, Meals and Wheels

for senior citizens. I miss my parents the most, my dad took me to

church every Sunday and to socialize with people. I lived in my

house for 41 years with my parents until they passed away then I

move to new town home to be independent. I live by my sister and my

nephew with his wife so I visit them sometimes. finally I got the

job at Kruppp Robins for ten years and I really enjoyed it. they are

engineers and I do assisting like stock the kitchen, do copy work,

scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my

computer and reading a book if they don't have work for me, and

that's fine with me. My parents really helped a lot to find the job

when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few

who very understanding that I'm different. I used to be self

conscious about how I look, how skinny I was and I didn't like my

shoulders much. There weren't very many CHARGE around and my family

used to tell me it was very rare to get CHARGE and I thought maybe

very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to

get good shape like they have. I remember my few friends and family

told me to be yourself. If they aren't friendly that is their

problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now

if I can remember. Well maybe not that funny. I think when I was a

kid when I had lack of balance and I didn't pay attention to the

table and I fell on the edge of table and hit my forehead very badly

and the blood stared to flow. I think my sister took me to see my

mom and she was panicked so I went to the doctor to have stitches.

Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I

asked my mom if I can go to the pool but I wasn't paying attention

to what she was saying when she was busy doing something. I thought

she said go ahead, but really she said wait for me then we go. How

stupid I was, here we go. I walked down to the busy street about ten

minutes from my house and good thing the street wasn't real busy at

that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't

remember if I told her I wanted to go to pool. she thought I might

be lost, so she took me to the police station if I was lost. So a

funny thing was that I climbed up and looked at the gerbils in the

cage then I fell backward. Then the cage fell with me and the

gerbils were on my face so I got some scratches, but not that bad.

I'm sure my parents were panicked to know where I was. Finally the

police took me home and my mom was very furious so I was grounded. I

remember I spent the night with my cousins and we had fun playing

outside at night. Well they could see and they pulled me to run and

I smash into the mail box because I couldn't see. they forgot I

couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring

and I was like uh, I do have elf ears like those. Sometime I tease

because I walk like a penguin maybe that's because I like penguins

and they are cute and that is that way I walk. I told my family I

walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book

(Harry Potter book series is my favorite). jigsaw puzzles and movies

(Matrix movies and Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

Link to comment
Share on other sites

Guest guest

you're welcome i'm glad you enjoyed it. michele s.

Re: Fw: introduce myself as charge

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges

with mild CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's

water broke and they had to rush to the hospital, and they said the

cord was around me or whatever it was. After I was delivered, the

doctors noticed I had trouble breathing and didn't know what was

the matter so they called it birth defect. They also put me in

intensive care and I have been to the hospital several times since

to see if there is any thing wrong with me, they found out I have

one kidney and a breathing problem. That was all they knew and they

didn't say anything about my deafness. it was in 1965. I didn't

asked my parents a lot of questions about being born with CHARGE. I

knew I was different with vision/hearing impairment, elf shape ears,

loop shoulders, low muscles tone, one kidney, swallowing problem,

breathing problem, late hormone developmrnt, lack of balance, small

mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry

me and I would be fine. I noticed my right side was worse side than

the left side, my right eye has tunnel vision but I can see

distnce. My right ear is very bad, I only can hear the high

fremqiecy, I have one very small kidney is not working, but my left

side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one

good kidney. My parents fed me with a little dropper and it too me a

long time finish it. My poor parents , I might made them exhausted,

I didn't have a feeding tube like many CHARGE babies.

>

> I've had four nose operations. My first, second, and fourth

weren't doing very well, the doctors just tried to straighten my

nose and widen nostrils to breath through. The third one was the

best. The doctor from Colorado Springs took out all the bones and

tissues in the back of my sinus and top of the roof of my mouth then

I can breath better. it was because I couldn't breath through sinus

and mucus kept running down forward instead of back of my sinus.

>

> I didn't start walking until I was three. I started wearing

hearing aids and glasses at four, and went to kindergarden at seven.

how did do I learn to start walking? I think my parents told me

when I had trouble with balance and kept falling on something on my

head I had to wear helmet for a while until I got better. I don't

know about glasses. I think they noticed I couldn't see well so I

went to eye doctor to get my new glasses and hearing aids. I'm not

sure I remember what mom said, I went to mentally handicapped school

when I was three or four and it wasn't right for me and my parents

didn't like the idea to think I'm mentally retarded and so I guess

the doctors were wrong; I went back to audiologists to test my

hearing again and found out I couldn't hear until I wear hearing

aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at

eight and I did it real well with deaf group. I went to oral school

until eighth grade. I wanted to learn sign so I could communicate

with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere

with them to vacations, to the movies, go out eat, go to church and

fishing camp and baseball. Some of my friends went to Lion Camp and

church activity after I graduated from high shool. I kept myself

busy mostly with my mom to bowling, lunch, golf, and gambling with

her friends, I went with Mom to grocery shopping, Meals and Wheels

for senior citizens. I miss my parents the most, my dad took me to

church every Sunday and to socialize with people. I lived in my

house for 41 years with my parents until they passed away then I

move to new town home to be independent. I live by my sister and my

nephew with his wife so I visit them sometimes. finally I got the

job at Kruppp Robins for ten years and I really enjoyed it. they are

engineers and I do assisting like stock the kitchen, do copy work,

scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my

computer and reading a book if they don't have work for me, and

that's fine with me. My parents really helped a lot to find the job

when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few

who very understanding that I'm different. I used to be self

conscious about how I look, how skinny I was and I didn't like my

shoulders much. There weren't very many CHARGE around and my family

used to tell me it was very rare to get CHARGE and I thought maybe

very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to

get good shape like they have. I remember my few friends and family

told me to be yourself. If they aren't friendly that is their

problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now

if I can remember. Well maybe not that funny. I think when I was a

kid when I had lack of balance and I didn't pay attention to the

table and I fell on the edge of table and hit my forehead very badly

and the blood stared to flow. I think my sister took me to see my

mom and she was panicked so I went to the doctor to have stitches.

Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I

asked my mom if I can go to the pool but I wasn't paying attention

to what she was saying when she was busy doing something. I thought

she said go ahead, but really she said wait for me then we go. How

stupid I was, here we go. I walked down to the busy street about ten

minutes from my house and good thing the street wasn't real busy at

that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't

remember if I told her I wanted to go to pool. she thought I might

be lost, so she took me to the police station if I was lost. So a

funny thing was that I climbed up and looked at the gerbils in the

cage then I fell backward. Then the cage fell with me and the

gerbils were on my face so I got some scratches, but not that bad.

I'm sure my parents were panicked to know where I was. Finally the

police took me home and my mom was very furious so I was grounded. I

remember I spent the night with my cousins and we had fun playing

outside at night. Well they could see and they pulled me to run and

I smash into the mail box because I couldn't see. they forgot I

couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring

and I was like uh, I do have elf ears like those. Sometime I tease

because I walk like a penguin maybe that's because I like penguins

and they are cute and that is that way I walk. I told my family I

walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book

(Harry Potter book series is my favorite). jigsaw puzzles and movies

(Matrix movies and Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

Link to comment
Share on other sites

Guest guest

you're welcome i'm glad you enjoyed it. michele s.

Re: Fw: introduce myself as charge

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges

with mild CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's

water broke and they had to rush to the hospital, and they said the

cord was around me or whatever it was. After I was delivered, the

doctors noticed I had trouble breathing and didn't know what was

the matter so they called it birth defect. They also put me in

intensive care and I have been to the hospital several times since

to see if there is any thing wrong with me, they found out I have

one kidney and a breathing problem. That was all they knew and they

didn't say anything about my deafness. it was in 1965. I didn't

asked my parents a lot of questions about being born with CHARGE. I

knew I was different with vision/hearing impairment, elf shape ears,

loop shoulders, low muscles tone, one kidney, swallowing problem,

breathing problem, late hormone developmrnt, lack of balance, small

mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry

me and I would be fine. I noticed my right side was worse side than

the left side, my right eye has tunnel vision but I can see

distnce. My right ear is very bad, I only can hear the high

fremqiecy, I have one very small kidney is not working, but my left

side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one

good kidney. My parents fed me with a little dropper and it too me a

long time finish it. My poor parents , I might made them exhausted,

I didn't have a feeding tube like many CHARGE babies.

>

> I've had four nose operations. My first, second, and fourth

weren't doing very well, the doctors just tried to straighten my

nose and widen nostrils to breath through. The third one was the

best. The doctor from Colorado Springs took out all the bones and

tissues in the back of my sinus and top of the roof of my mouth then

I can breath better. it was because I couldn't breath through sinus

and mucus kept running down forward instead of back of my sinus.

>

> I didn't start walking until I was three. I started wearing

hearing aids and glasses at four, and went to kindergarden at seven.

how did do I learn to start walking? I think my parents told me

when I had trouble with balance and kept falling on something on my

head I had to wear helmet for a while until I got better. I don't

know about glasses. I think they noticed I couldn't see well so I

went to eye doctor to get my new glasses and hearing aids. I'm not

sure I remember what mom said, I went to mentally handicapped school

when I was three or four and it wasn't right for me and my parents

didn't like the idea to think I'm mentally retarded and so I guess

the doctors were wrong; I went back to audiologists to test my

hearing again and found out I couldn't hear until I wear hearing

aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at

eight and I did it real well with deaf group. I went to oral school

until eighth grade. I wanted to learn sign so I could communicate

with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere

with them to vacations, to the movies, go out eat, go to church and

fishing camp and baseball. Some of my friends went to Lion Camp and

church activity after I graduated from high shool. I kept myself

busy mostly with my mom to bowling, lunch, golf, and gambling with

her friends, I went with Mom to grocery shopping, Meals and Wheels

for senior citizens. I miss my parents the most, my dad took me to

church every Sunday and to socialize with people. I lived in my

house for 41 years with my parents until they passed away then I

move to new town home to be independent. I live by my sister and my

nephew with his wife so I visit them sometimes. finally I got the

job at Kruppp Robins for ten years and I really enjoyed it. they are

engineers and I do assisting like stock the kitchen, do copy work,

scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my

computer and reading a book if they don't have work for me, and

that's fine with me. My parents really helped a lot to find the job

when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few

who very understanding that I'm different. I used to be self

conscious about how I look, how skinny I was and I didn't like my

shoulders much. There weren't very many CHARGE around and my family

used to tell me it was very rare to get CHARGE and I thought maybe

very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to

get good shape like they have. I remember my few friends and family

told me to be yourself. If they aren't friendly that is their

problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now

if I can remember. Well maybe not that funny. I think when I was a

kid when I had lack of balance and I didn't pay attention to the

table and I fell on the edge of table and hit my forehead very badly

and the blood stared to flow. I think my sister took me to see my

mom and she was panicked so I went to the doctor to have stitches.

Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I

asked my mom if I can go to the pool but I wasn't paying attention

to what she was saying when she was busy doing something. I thought

she said go ahead, but really she said wait for me then we go. How

stupid I was, here we go. I walked down to the busy street about ten

minutes from my house and good thing the street wasn't real busy at

that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't

remember if I told her I wanted to go to pool. she thought I might

be lost, so she took me to the police station if I was lost. So a

funny thing was that I climbed up and looked at the gerbils in the

cage then I fell backward. Then the cage fell with me and the

gerbils were on my face so I got some scratches, but not that bad.

I'm sure my parents were panicked to know where I was. Finally the

police took me home and my mom was very furious so I was grounded. I

remember I spent the night with my cousins and we had fun playing

outside at night. Well they could see and they pulled me to run and

I smash into the mail box because I couldn't see. they forgot I

couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring

and I was like uh, I do have elf ears like those. Sometime I tease

because I walk like a penguin maybe that's because I like penguins

and they are cute and that is that way I walk. I told my family I

walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book

(Harry Potter book series is my favorite). jigsaw puzzles and movies

(Matrix movies and Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

Link to comment
Share on other sites

Guest guest

you're welcome i'm glad you enjoyed it. michele s.

Re: Fw: introduce myself as charge

>

> Hi everybody,

>

> Some of you might be eager to know how I live through challenges

with mild CHARGE. I'll try to remember from the beginning to now.

>

> I remember my parents told me, before I was born my mother's

water broke and they had to rush to the hospital, and they said the

cord was around me or whatever it was. After I was delivered, the

doctors noticed I had trouble breathing and didn't know what was

the matter so they called it birth defect. They also put me in

intensive care and I have been to the hospital several times since

to see if there is any thing wrong with me, they found out I have

one kidney and a breathing problem. That was all they knew and they

didn't say anything about my deafness. it was in 1965. I didn't

asked my parents a lot of questions about being born with CHARGE. I

knew I was different with vision/hearing impairment, elf shape ears,

loop shoulders, low muscles tone, one kidney, swallowing problem,

breathing problem, late hormone developmrnt, lack of balance, small

mouth and lack of smell. I think that is all. well as you know my

parents were very protective of me because they did't want to worry

me and I would be fine. I noticed my right side was worse side than

the left side, my right eye has tunnel vision but I can see

distnce. My right ear is very bad, I only can hear the high

fremqiecy, I have one very small kidney is not working, but my left

side ear is very good and has moderate hearing loss. My left eye is

good I can see the distance, but still poor eyesight. i have one

good kidney. My parents fed me with a little dropper and it too me a

long time finish it. My poor parents , I might made them exhausted,

I didn't have a feeding tube like many CHARGE babies.

>

> I've had four nose operations. My first, second, and fourth

weren't doing very well, the doctors just tried to straighten my

nose and widen nostrils to breath through. The third one was the

best. The doctor from Colorado Springs took out all the bones and

tissues in the back of my sinus and top of the roof of my mouth then

I can breath better. it was because I couldn't breath through sinus

and mucus kept running down forward instead of back of my sinus.

>

> I didn't start walking until I was three. I started wearing

hearing aids and glasses at four, and went to kindergarden at seven.

how did do I learn to start walking? I think my parents told me

when I had trouble with balance and kept falling on something on my

head I had to wear helmet for a while until I got better. I don't

know about glasses. I think they noticed I couldn't see well so I

went to eye doctor to get my new glasses and hearing aids. I'm not

sure I remember what mom said, I went to mentally handicapped school

when I was three or four and it wasn't right for me and my parents

didn't like the idea to think I'm mentally retarded and so I guess

the doctors were wrong; I went back to audiologists to test my

hearing again and found out I couldn't hear until I wear hearing

aids. I went to preschool or kindergarten with regular kids then I

started mainstream with hearing and deaf. I start in first grade at

eight and I did it real well with deaf group. I went to oral school

until eighth grade. I wanted to learn sign so I could communicate

with my few deaf friends who sign

>

> I have a lot of support from my big family I go everywhere

with them to vacations, to the movies, go out eat, go to church and

fishing camp and baseball. Some of my friends went to Lion Camp and

church activity after I graduated from high shool. I kept myself

busy mostly with my mom to bowling, lunch, golf, and gambling with

her friends, I went with Mom to grocery shopping, Meals and Wheels

for senior citizens. I miss my parents the most, my dad took me to

church every Sunday and to socialize with people. I lived in my

house for 41 years with my parents until they passed away then I

move to new town home to be independent. I live by my sister and my

nephew with his wife so I visit them sometimes. finally I got the

job at Kruppp Robins for ten years and I really enjoyed it. they are

engineers and I do assisting like stock the kitchen, do copy work,

scanning, and shredding. I work part time, four days a week, and two

and half hours a day. Mostly I do my own thing like working on my

computer and reading a book if they don't have work for me, and

that's fine with me. My parents really helped a lot to find the job

when I wasn't crazy about working.

>

> Making friends wasn't easy like normal kids. I made just a few

who very understanding that I'm different. I used to be self

conscious about how I look, how skinny I was and I didn't like my

shoulders much. There weren't very many CHARGE around and my family

used to tell me it was very rare to get CHARGE and I thought maybe

very few people around this world had it.Also I have been around

normal people for a long time. Sometime I get irritated and want to

get good shape like they have. I remember my few friends and family

told me to be yourself. If they aren't friendly that is their

problem so I got better not to worry what people think.

>

> I did funny things sometime from when I was a toddle until now

if I can remember. Well maybe not that funny. I think when I was a

kid when I had lack of balance and I didn't pay attention to the

table and I fell on the edge of table and hit my forehead very badly

and the blood stared to flow. I think my sister took me to see my

mom and she was panicked so I went to the doctor to have stitches.

Ouch! sometime, I tripped down the stairs but it is miracle that I'm

okay. When I was nine I would like to go the pool to Eisenhower so I

asked my mom if I can go to the pool but I wasn't paying attention

to what she was saying when she was busy doing something. I thought

she said go ahead, but really she said wait for me then we go. How

stupid I was, here we go. I walked down to the busy street about ten

minutes from my house and good thing the street wasn't real busy at

that time. it seems like I know where to go, but a lady with her

kids stopped me and wondered why I was walking alone. I don't

remember if I told her I wanted to go to pool. she thought I might

be lost, so she took me to the police station if I was lost. So a

funny thing was that I climbed up and looked at the gerbils in the

cage then I fell backward. Then the cage fell with me and the

gerbils were on my face so I got some scratches, but not that bad.

I'm sure my parents were panicked to know where I was. Finally the

police took me home and my mom was very furious so I was grounded. I

remember I spent the night with my cousins and we had fun playing

outside at night. Well they could see and they pulled me to run and

I smash into the mail box because I couldn't see. they forgot I

couldn't see very well at night.

>

> Sometime I joke about myself like when I saw Lord Of The Ring

and I was like uh, I do have elf ears like those. Sometime I tease

because I walk like a penguin maybe that's because I like penguins

and they are cute and that is that way I walk. I told my family I

walk like I'm drunk, oh what the heck.

>

> I enjoy bowling, gambling, relaxing at home, reading a book

(Harry Potter book series is my favorite). jigsaw puzzles and movies

(Matrix movies and Harry Potter movies).

>

> There you go,

> Hope you like my story

> Michele S.

>

>

Link to comment
Share on other sites

Guest guest

i loved it hugs ellen charge in a;us who has been severe but is turning

rather mild LOL

>

> you're welcome i'm glad you enjoyed it. michele s.

> Re: Fw: introduce myself as charge

>

>

> >

> > Hi everybody,

> >

> > Some of you might be eager to know how I live through challenges

> with mild CHARGE. I'll try to remember from the beginning to now.

> >

> > I remember my parents told me, before I was born my mother's

> water broke and they had to rush to the hospital, and they said the

> cord was around me or whatever it was. After I was delivered, the

> doctors noticed I had trouble breathing and didn't know what was

> the matter so they called it birth defect. They also put me in

> intensive care and I have been to the hospital several times since

> to see if there is any thing wrong with me, they found out I have

> one kidney and a breathing problem. That was all they knew and they

> didn't say anything about my deafness. it was in 1965. I didn't

> asked my parents a lot of questions about being born with CHARGE. I

> knew I was different with vision/hearing impairment, elf shape ears,

> loop shoulders, low muscles tone, one kidney, swallowing problem,

> breathing problem, late hormone developmrnt, lack of balance, small

> mouth and lack of smell. I think that is all. well as you know my

> parents were very protective of me because they did't want to worry

> me and I would be fine. I noticed my right side was worse side than

> the left side, my right eye has tunnel vision but I can see

> distnce. My right ear is very bad, I only can hear the high

> fremqiecy, I have one very small kidney is not working, but my left

> side ear is very good and has moderate hearing loss. My left eye is

> good I can see the distance, but still poor eyesight. i have one

> good kidney. My parents fed me with a little dropper and it too me a

> long time finish it. My poor parents , I might made them exhausted,

> I didn't have a feeding tube like many CHARGE babies.

> >

> > I've had four nose operations. My first, second, and fourth

> weren't doing very well, the doctors just tried to straighten my

> nose and widen nostrils to breath through. The third one was the

> best. The doctor from Colorado Springs took out all the bones and

> tissues in the back of my sinus and top of the roof of my mouth then

> I can breath better. it was because I couldn't breath through sinus

> and mucus kept running down forward instead of back of my sinus.

> >

> > I didn't start walking until I was three. I started wearing

> hearing aids and glasses at four, and went to kindergarden at seven.

> how did do I learn to start walking? I think my parents told me

> when I had trouble with balance and kept falling on something on my

> head I had to wear helmet for a while until I got better. I don't

> know about glasses. I think they noticed I couldn't see well so I

> went to eye doctor to get my new glasses and hearing aids. I'm not

> sure I remember what mom said, I went to mentally handicapped school

> when I was three or four and it wasn't right for me and my parents

> didn't like the idea to think I'm mentally retarded and so I guess

> the doctors were wrong; I went back to audiologists to test my

> hearing again and found out I couldn't hear until I wear hearing

> aids. I went to preschool or kindergarten with regular kids then I

> started mainstream with hearing and deaf. I start in first grade at

> eight and I did it real well with deaf group. I went to oral school

> until eighth grade. I wanted to learn sign so I could communicate

> with my few deaf friends who sign

> >

> > I have a lot of support from my big family I go everywhere

> with them to vacations, to the movies, go out eat, go to church and

> fishing camp and baseball. Some of my friends went to Lion Camp and

> church activity after I graduated from high shool. I kept myself

> busy mostly with my mom to bowling, lunch, golf, and gambling with

> her friends, I went with Mom to grocery shopping, Meals and Wheels

> for senior citizens. I miss my parents the most, my dad took me to

> church every Sunday and to socialize with people. I lived in my

> house for 41 years with my parents until they passed away then I

> move to new town home to be independent. I live by my sister and my

> nephew with his wife so I visit them sometimes. finally I got the

> job at Kruppp Robins for ten years and I really enjoyed it. they are

> engineers and I do assisting like stock the kitchen, do copy work,

> scanning, and shredding. I work part time, four days a week, and two

> and half hours a day. Mostly I do my own thing like working on my

> computer and reading a book if they don't have work for me, and

> that's fine with me. My parents really helped a lot to find the job

> when I wasn't crazy about working.

> >

> > Making friends wasn't easy like normal kids. I made just a few

> who very understanding that I'm different. I used to be self

> conscious about how I look, how skinny I was and I didn't like my

> shoulders much. There weren't very many CHARGE around and my family

> used to tell me it was very rare to get CHARGE and I thought maybe

> very few people around this world had it.Also I have been around

> normal people for a long time. Sometime I get irritated and want to

> get good shape like they have. I remember my few friends and family

> told me to be yourself. If they aren't friendly that is their

> problem so I got better not to worry what people think.

> >

> > I did funny things sometime from when I was a toddle until now

> if I can remember. Well maybe not that funny. I think when I was a

> kid when I had lack of balance and I didn't pay attention to the

> table and I fell on the edge of table and hit my forehead very badly

> and the blood stared to flow. I think my sister took me to see my

> mom and she was panicked so I went to the doctor to have stitches.

> Ouch! sometime, I tripped down the stairs but it is miracle that I'm

> okay. When I was nine I would like to go the pool to Eisenhower so I

> asked my mom if I can go to the pool but I wasn't paying attention

> to what she was saying when she was busy doing something. I thought

> she said go ahead, but really she said wait for me then we go. How

> stupid I was, here we go. I walked down to the busy street about ten

> minutes from my house and good thing the street wasn't real busy at

> that time. it seems like I know where to go, but a lady with her

> kids stopped me and wondered why I was walking alone. I don't

> remember if I told her I wanted to go to pool. she thought I might

> be lost, so she took me to the police station if I was lost. So a

> funny thing was that I climbed up and looked at the gerbils in the

> cage then I fell backward. Then the cage fell with me and the

> gerbils were on my face so I got some scratches, but not that bad.

> I'm sure my parents were panicked to know where I was. Finally the

> police took me home and my mom was very furious so I was grounded. I

> remember I spent the night with my cousins and we had fun playing

> outside at night. Well they could see and they pulled me to run and

> I smash into the mail box because I couldn't see. they forgot I

> couldn't see very well at night.

> >

> > Sometime I joke about myself like when I saw Lord Of The Ring

> and I was like uh, I do have elf ears like those. Sometime I tease

> because I walk like a penguin maybe that's because I like penguins

> and they are cute and that is that way I walk. I told my family I

> walk like I'm drunk, oh what the heck.

> >

> > I enjoy bowling, gambling, relaxing at home, reading a book

> (Harry Potter book series is my favorite). jigsaw puzzles and movies

> (Matrix movies and Harry Potter movies).

> >

> > There you go,

> > Hope you like my story

> > Michele S.

> >

> >

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Guest guest

i loved it hugs ellen charge in a;us who has been severe but is turning

rather mild LOL

>

> you're welcome i'm glad you enjoyed it. michele s.

> Re: Fw: introduce myself as charge

>

>

> >

> > Hi everybody,

> >

> > Some of you might be eager to know how I live through challenges

> with mild CHARGE. I'll try to remember from the beginning to now.

> >

> > I remember my parents told me, before I was born my mother's

> water broke and they had to rush to the hospital, and they said the

> cord was around me or whatever it was. After I was delivered, the

> doctors noticed I had trouble breathing and didn't know what was

> the matter so they called it birth defect. They also put me in

> intensive care and I have been to the hospital several times since

> to see if there is any thing wrong with me, they found out I have

> one kidney and a breathing problem. That was all they knew and they

> didn't say anything about my deafness. it was in 1965. I didn't

> asked my parents a lot of questions about being born with CHARGE. I

> knew I was different with vision/hearing impairment, elf shape ears,

> loop shoulders, low muscles tone, one kidney, swallowing problem,

> breathing problem, late hormone developmrnt, lack of balance, small

> mouth and lack of smell. I think that is all. well as you know my

> parents were very protective of me because they did't want to worry

> me and I would be fine. I noticed my right side was worse side than

> the left side, my right eye has tunnel vision but I can see

> distnce. My right ear is very bad, I only can hear the high

> fremqiecy, I have one very small kidney is not working, but my left

> side ear is very good and has moderate hearing loss. My left eye is

> good I can see the distance, but still poor eyesight. i have one

> good kidney. My parents fed me with a little dropper and it too me a

> long time finish it. My poor parents , I might made them exhausted,

> I didn't have a feeding tube like many CHARGE babies.

> >

> > I've had four nose operations. My first, second, and fourth

> weren't doing very well, the doctors just tried to straighten my

> nose and widen nostrils to breath through. The third one was the

> best. The doctor from Colorado Springs took out all the bones and

> tissues in the back of my sinus and top of the roof of my mouth then

> I can breath better. it was because I couldn't breath through sinus

> and mucus kept running down forward instead of back of my sinus.

> >

> > I didn't start walking until I was three. I started wearing

> hearing aids and glasses at four, and went to kindergarden at seven.

> how did do I learn to start walking? I think my parents told me

> when I had trouble with balance and kept falling on something on my

> head I had to wear helmet for a while until I got better. I don't

> know about glasses. I think they noticed I couldn't see well so I

> went to eye doctor to get my new glasses and hearing aids. I'm not

> sure I remember what mom said, I went to mentally handicapped school

> when I was three or four and it wasn't right for me and my parents

> didn't like the idea to think I'm mentally retarded and so I guess

> the doctors were wrong; I went back to audiologists to test my

> hearing again and found out I couldn't hear until I wear hearing

> aids. I went to preschool or kindergarten with regular kids then I

> started mainstream with hearing and deaf. I start in first grade at

> eight and I did it real well with deaf group. I went to oral school

> until eighth grade. I wanted to learn sign so I could communicate

> with my few deaf friends who sign

> >

> > I have a lot of support from my big family I go everywhere

> with them to vacations, to the movies, go out eat, go to church and

> fishing camp and baseball. Some of my friends went to Lion Camp and

> church activity after I graduated from high shool. I kept myself

> busy mostly with my mom to bowling, lunch, golf, and gambling with

> her friends, I went with Mom to grocery shopping, Meals and Wheels

> for senior citizens. I miss my parents the most, my dad took me to

> church every Sunday and to socialize with people. I lived in my

> house for 41 years with my parents until they passed away then I

> move to new town home to be independent. I live by my sister and my

> nephew with his wife so I visit them sometimes. finally I got the

> job at Kruppp Robins for ten years and I really enjoyed it. they are

> engineers and I do assisting like stock the kitchen, do copy work,

> scanning, and shredding. I work part time, four days a week, and two

> and half hours a day. Mostly I do my own thing like working on my

> computer and reading a book if they don't have work for me, and

> that's fine with me. My parents really helped a lot to find the job

> when I wasn't crazy about working.

> >

> > Making friends wasn't easy like normal kids. I made just a few

> who very understanding that I'm different. I used to be self

> conscious about how I look, how skinny I was and I didn't like my

> shoulders much. There weren't very many CHARGE around and my family

> used to tell me it was very rare to get CHARGE and I thought maybe

> very few people around this world had it.Also I have been around

> normal people for a long time. Sometime I get irritated and want to

> get good shape like they have. I remember my few friends and family

> told me to be yourself. If they aren't friendly that is their

> problem so I got better not to worry what people think.

> >

> > I did funny things sometime from when I was a toddle until now

> if I can remember. Well maybe not that funny. I think when I was a

> kid when I had lack of balance and I didn't pay attention to the

> table and I fell on the edge of table and hit my forehead very badly

> and the blood stared to flow. I think my sister took me to see my

> mom and she was panicked so I went to the doctor to have stitches.

> Ouch! sometime, I tripped down the stairs but it is miracle that I'm

> okay. When I was nine I would like to go the pool to Eisenhower so I

> asked my mom if I can go to the pool but I wasn't paying attention

> to what she was saying when she was busy doing something. I thought

> she said go ahead, but really she said wait for me then we go. How

> stupid I was, here we go. I walked down to the busy street about ten

> minutes from my house and good thing the street wasn't real busy at

> that time. it seems like I know where to go, but a lady with her

> kids stopped me and wondered why I was walking alone. I don't

> remember if I told her I wanted to go to pool. she thought I might

> be lost, so she took me to the police station if I was lost. So a

> funny thing was that I climbed up and looked at the gerbils in the

> cage then I fell backward. Then the cage fell with me and the

> gerbils were on my face so I got some scratches, but not that bad.

> I'm sure my parents were panicked to know where I was. Finally the

> police took me home and my mom was very furious so I was grounded. I

> remember I spent the night with my cousins and we had fun playing

> outside at night. Well they could see and they pulled me to run and

> I smash into the mail box because I couldn't see. they forgot I

> couldn't see very well at night.

> >

> > Sometime I joke about myself like when I saw Lord Of The Ring

> and I was like uh, I do have elf ears like those. Sometime I tease

> because I walk like a penguin maybe that's because I like penguins

> and they are cute and that is that way I walk. I told my family I

> walk like I'm drunk, oh what the heck.

> >

> > I enjoy bowling, gambling, relaxing at home, reading a book

> (Harry Potter book series is my favorite). jigsaw puzzles and movies

> (Matrix movies and Harry Potter movies).

> >

> > There you go,

> > Hope you like my story

> > Michele S.

> >

> >

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Share on other sites

Guest guest

i loved it hugs ellen charge in a;us who has been severe but is turning

rather mild LOL

>

> you're welcome i'm glad you enjoyed it. michele s.

> Re: Fw: introduce myself as charge

>

>

> >

> > Hi everybody,

> >

> > Some of you might be eager to know how I live through challenges

> with mild CHARGE. I'll try to remember from the beginning to now.

> >

> > I remember my parents told me, before I was born my mother's

> water broke and they had to rush to the hospital, and they said the

> cord was around me or whatever it was. After I was delivered, the

> doctors noticed I had trouble breathing and didn't know what was

> the matter so they called it birth defect. They also put me in

> intensive care and I have been to the hospital several times since

> to see if there is any thing wrong with me, they found out I have

> one kidney and a breathing problem. That was all they knew and they

> didn't say anything about my deafness. it was in 1965. I didn't

> asked my parents a lot of questions about being born with CHARGE. I

> knew I was different with vision/hearing impairment, elf shape ears,

> loop shoulders, low muscles tone, one kidney, swallowing problem,

> breathing problem, late hormone developmrnt, lack of balance, small

> mouth and lack of smell. I think that is all. well as you know my

> parents were very protective of me because they did't want to worry

> me and I would be fine. I noticed my right side was worse side than

> the left side, my right eye has tunnel vision but I can see

> distnce. My right ear is very bad, I only can hear the high

> fremqiecy, I have one very small kidney is not working, but my left

> side ear is very good and has moderate hearing loss. My left eye is

> good I can see the distance, but still poor eyesight. i have one

> good kidney. My parents fed me with a little dropper and it too me a

> long time finish it. My poor parents , I might made them exhausted,

> I didn't have a feeding tube like many CHARGE babies.

> >

> > I've had four nose operations. My first, second, and fourth

> weren't doing very well, the doctors just tried to straighten my

> nose and widen nostrils to breath through. The third one was the

> best. The doctor from Colorado Springs took out all the bones and

> tissues in the back of my sinus and top of the roof of my mouth then

> I can breath better. it was because I couldn't breath through sinus

> and mucus kept running down forward instead of back of my sinus.

> >

> > I didn't start walking until I was three. I started wearing

> hearing aids and glasses at four, and went to kindergarden at seven.

> how did do I learn to start walking? I think my parents told me

> when I had trouble with balance and kept falling on something on my

> head I had to wear helmet for a while until I got better. I don't

> know about glasses. I think they noticed I couldn't see well so I

> went to eye doctor to get my new glasses and hearing aids. I'm not

> sure I remember what mom said, I went to mentally handicapped school

> when I was three or four and it wasn't right for me and my parents

> didn't like the idea to think I'm mentally retarded and so I guess

> the doctors were wrong; I went back to audiologists to test my

> hearing again and found out I couldn't hear until I wear hearing

> aids. I went to preschool or kindergarten with regular kids then I

> started mainstream with hearing and deaf. I start in first grade at

> eight and I did it real well with deaf group. I went to oral school

> until eighth grade. I wanted to learn sign so I could communicate

> with my few deaf friends who sign

> >

> > I have a lot of support from my big family I go everywhere

> with them to vacations, to the movies, go out eat, go to church and

> fishing camp and baseball. Some of my friends went to Lion Camp and

> church activity after I graduated from high shool. I kept myself

> busy mostly with my mom to bowling, lunch, golf, and gambling with

> her friends, I went with Mom to grocery shopping, Meals and Wheels

> for senior citizens. I miss my parents the most, my dad took me to

> church every Sunday and to socialize with people. I lived in my

> house for 41 years with my parents until they passed away then I

> move to new town home to be independent. I live by my sister and my

> nephew with his wife so I visit them sometimes. finally I got the

> job at Kruppp Robins for ten years and I really enjoyed it. they are

> engineers and I do assisting like stock the kitchen, do copy work,

> scanning, and shredding. I work part time, four days a week, and two

> and half hours a day. Mostly I do my own thing like working on my

> computer and reading a book if they don't have work for me, and

> that's fine with me. My parents really helped a lot to find the job

> when I wasn't crazy about working.

> >

> > Making friends wasn't easy like normal kids. I made just a few

> who very understanding that I'm different. I used to be self

> conscious about how I look, how skinny I was and I didn't like my

> shoulders much. There weren't very many CHARGE around and my family

> used to tell me it was very rare to get CHARGE and I thought maybe

> very few people around this world had it.Also I have been around

> normal people for a long time. Sometime I get irritated and want to

> get good shape like they have. I remember my few friends and family

> told me to be yourself. If they aren't friendly that is their

> problem so I got better not to worry what people think.

> >

> > I did funny things sometime from when I was a toddle until now

> if I can remember. Well maybe not that funny. I think when I was a

> kid when I had lack of balance and I didn't pay attention to the

> table and I fell on the edge of table and hit my forehead very badly

> and the blood stared to flow. I think my sister took me to see my

> mom and she was panicked so I went to the doctor to have stitches.

> Ouch! sometime, I tripped down the stairs but it is miracle that I'm

> okay. When I was nine I would like to go the pool to Eisenhower so I

> asked my mom if I can go to the pool but I wasn't paying attention

> to what she was saying when she was busy doing something. I thought

> she said go ahead, but really she said wait for me then we go. How

> stupid I was, here we go. I walked down to the busy street about ten

> minutes from my house and good thing the street wasn't real busy at

> that time. it seems like I know where to go, but a lady with her

> kids stopped me and wondered why I was walking alone. I don't

> remember if I told her I wanted to go to pool. she thought I might

> be lost, so she took me to the police station if I was lost. So a

> funny thing was that I climbed up and looked at the gerbils in the

> cage then I fell backward. Then the cage fell with me and the

> gerbils were on my face so I got some scratches, but not that bad.

> I'm sure my parents were panicked to know where I was. Finally the

> police took me home and my mom was very furious so I was grounded. I

> remember I spent the night with my cousins and we had fun playing

> outside at night. Well they could see and they pulled me to run and

> I smash into the mail box because I couldn't see. they forgot I

> couldn't see very well at night.

> >

> > Sometime I joke about myself like when I saw Lord Of The Ring

> and I was like uh, I do have elf ears like those. Sometime I tease

> because I walk like a penguin maybe that's because I like penguins

> and they are cute and that is that way I walk. I told my family I

> walk like I'm drunk, oh what the heck.

> >

> > I enjoy bowling, gambling, relaxing at home, reading a book

> (Harry Potter book series is my favorite). jigsaw puzzles and movies

> (Matrix movies and Harry Potter movies).

> >

> > There you go,

> > Hope you like my story

> > Michele S.

> >

> >

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Guest guest

I especially liked this part:

> ... I remember I spent the night with my cousins and we had fun

> playing outside at night. Well they could see and they pulled me to

> run and I smash into the mail box because I couldn't see. they forgot

> I couldn't see very well at night.

I hope someday Eddie's cousins treat him just like they treat each

other. (Some are older, some are 7, like him, one is younger) They

don't ignore him now, but they don't really interact with him either.

joanne

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Guest guest

I especially liked this part:

> ... I remember I spent the night with my cousins and we had fun

> playing outside at night. Well they could see and they pulled me to

> run and I smash into the mail box because I couldn't see. they forgot

> I couldn't see very well at night.

I hope someday Eddie's cousins treat him just like they treat each

other. (Some are older, some are 7, like him, one is younger) They

don't ignore him now, but they don't really interact with him either.

joanne

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Share on other sites

Guest guest

I especially liked this part:

> ... I remember I spent the night with my cousins and we had fun

> playing outside at night. Well they could see and they pulled me to

> run and I smash into the mail box because I couldn't see. they forgot

> I couldn't see very well at night.

I hope someday Eddie's cousins treat him just like they treat each

other. (Some are older, some are 7, like him, one is younger) They

don't ignore him now, but they don't really interact with him either.

joanne

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