Re: Fw: introduce myself as charge

[Guest guest]

I do both verbal and sign. I thought newsletters only had their stories.?

Michele S

Re: Fw: introduce myself as charge

I just had this idea....that we could have a charge adults page....with

adults stories....

and oh michele do you communicate verbally or with sign?

[Guest guest]

Hi Michele,

thanks for your story!!! I am thinking you are the oldest CHARGE adult we have

here--is this true everyone?

Our parents sound like they were pretty special--lucky you to have had them.

pam

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.

[Guest guest]

Cool Michele.. I dont know sign so im glad i will be able to communicate

with you...

Have you been getting the charge newsletter? did you read our stories from

the last conference

[Guest guest]

I'm glad you do we can communicate each other. yes I did read yours and charges

adults wrote about themselves. so do you like my story? hopefully maybe we talk

to each other at the conference, we might not reginize our face until we see our

name. few people read my story and really enjoyed it. Michele s

Re: Fw: introduce myself as charge

Cool Michele.. I dont know sign so im glad i will be able to communicate

with you...

Have you been getting the charge newsletter? did you read our stories from

the last conference

[Guest guest]

you're welcome, yes sound like i'm the oldest on the chargelist. I think I heard

someone like Meg or Michele W or whoever told me there some are around 40s or

50s who not on the chargelist and they are out there. is that right?. i guess it

make the parents feel special and feel better for their child. Few of them did

respond it back and really enjoyed it. Michele S.

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.

[Guest guest]

Michele,

I liked reading all about your growing up and things you parents

did to help you along the way. My son, , is 31. Sounds like you

and have a whole lot in commom concerning things you both have

accomplished in your lives. lives with two friends who are both

deaf but don't have CHARGE. There are staff working in their home to

help them with things like getting to work and planning meals and

cooking. works two days a week, 6 hours each day for a food

store named Giant. He has a cat named Chubby. He likes to watch

sports on tv and has a PlayStation 2, and a computer in his room. He

is active in allot of deaf activities in the area where he lives.

has a profound hearing loss so he uses ASL sign to communicate.

He likes to carry a little tablet around for writing when people

can't sign. This is his email if you would like to email him. He

likes hearing from other adults with CHARGE.

,

E-mail Address(es):

jjones75@...

mom to 31

>

> 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.

>

>

[Guest guest]

ah i'm glad you like it, so i can try to talk with him that would be fun.

michele s.

Re: Fw: introduce myself as charge

Michele,

I liked reading all about your growing up and things you parents

did to help you along the way. My son, , is 31. Sounds like you

and have a whole lot in commom concerning things you both have

accomplished in your lives. lives with two friends who are both

deaf but don't have CHARGE. There are staff working in their home to

help them with things like getting to work and planning meals and

cooking. works two days a week, 6 hours each day for a food

store named Giant. He has a cat named Chubby. He likes to watch

sports on tv and has a PlayStation 2, and a computer in his room. He

is active in allot of deaf activities in the area where he lives.

has a profound hearing loss so he uses ASL sign to communicate.

He likes to carry a little tablet around for writing when people

can't sign. This is his email if you would like to email him. He

likes hearing from other adults with CHARGE.

,

E-mail Address(es):

jjones75@...

mom to 31

>

> 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.

>

>

[Guest guest]

Michele,

I had exams last week and am just still recovering and getting caught up on

mail. What a treat to sit at my breakfast table on a Sunday morning and read

your story. It means so very much to me that you took the time to get that

all down for us to read. I often wonder about how Kennedy will make out

when she is older; stories like yours and the other adults' on the list give

me a lot of hope that she will have a bright future despite all the odds she

faces. I can't imagine what it would've been like for your mom & dad in the

60's to have gone through the whole CHARGE thing. They must've been super

special people. You must miss them so much, but their positive influence is

evident through your writing, the way you feel about yourself, and how well

you are doing.

Thank you so much for writing and again, I apologize for my late reply.

Love,

Kennedy's Mom

www.chargesyndrome.info

>

> 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.

>

>

[Guest guest]

You're right, Michele, we had a lady named Kay who was a little older

than you and Clive from England who was in his 50's. It's so great to see

some older people with CHARGE (not that you're old...you're the exact same

age as my sis, who was born in 1965~!)

Lis

>

> you're welcome, yes sound like i'm the oldest on the chargelist. I think

> I heard someone like Meg or Michele W or whoever told me there some are

> around 40s or 50s who not on the chargelist and they are out there. is that

> right?. i guess it make the parents feel special and feel better for their

> child. Few of them did respond it back and really enjoyed it. Michele S.

> 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.

>

>

[Guest guest]

Michele,

I can't remember if I've read before or not, but are you coming to the

CHARGE conference this summer? I would LOVE to meet you!

Kennedy's Mom

www.chargesyndrome.info

>

> ah i'm glad you like it, so i can try to talk with him that would be

> fun. michele s.

> Re: Fw: introduce myself as charge

>

> Michele,

> I liked reading all about your growing up and things you parents

> did to help you along the way. My son, , is 31. Sounds like you

> and have a whole lot in commom concerning things you both have

> accomplished in your lives. lives with two friends who are both

> deaf but don't have CHARGE. There are staff working in their home to

> help them with things like getting to work and planning meals and

> cooking. works two days a week, 6 hours each day for a food

> store named Giant. He has a cat named Chubby. He likes to watch

> sports on tv and has a PlayStation 2, and a computer in his room. He

> is active in allot of deaf activities in the area where he lives.

>

> has a profound hearing loss so he uses ASL sign to communicate.

> He likes to carry a little tablet around for writing when people

> can't sign. This is his email if you would like to email him. He

> likes hearing from other adults with CHARGE.

>

> ,

> E-mail Address(es):

> jjones75@...

>

> mom to 31

>

>

> >

> > 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.

> >

> >

[Guest guest]

oh not to worry being late, i'm really glad my story really make your day and

feeling positive future for your daughter. I wonder why isn't any older charge

people ever write about themselve and i like to know about them also.

thanks and you are welcome,

michele s.

Re: Fw: introduce myself as charge

Michele,

I had exams last week and am just still recovering and getting caught up on

mail. What a treat to sit at my breakfast table on a Sunday morning and read

your story. It means so very much to me that you took the time to get that

all down for us to read. I often wonder about how Kennedy will make out

when she is older; stories like yours and the other adults' on the list give

me a lot of hope that she will have a bright future despite all the odds she

faces. I can't imagine what it would've been like for your mom & dad in the

60's to have gone through the whole CHARGE thing. They must've been super

special people. You must miss them so much, but their positive influence is

evident through your writing, the way you feel about yourself, and how well

you are doing.

Thank you so much for writing and again, I apologize for my late reply.

Love,

Kennedy's Mom

www.chargesyndrome.info

>

> 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.

>

>

[Guest guest]

yes i'm going to conferene in july and very excite to meet you there. i might

remind myself to write it again in july to say LET'S GET ON ABORD AND

CHARGE!!!!! TO THE WEST whatever that is. michele s.

Re: Fw: introduce myself as charge

>

> Michele,

> I liked reading all about your growing up and things you parents

> did to help you along the way. My son, , is 31. Sounds like you

> and have a whole lot in commom concerning things you both have

> accomplished in your lives. lives with two friends who are both

> deaf but don't have CHARGE. There are staff working in their home to

> help them with things like getting to work and planning meals and

> cooking. works two days a week, 6 hours each day for a food

> store named Giant. He has a cat named Chubby. He likes to watch

> sports on tv and has a PlayStation 2, and a computer in his room. He

> is active in allot of deaf activities in the area where he lives.

>

> has a profound hearing loss so he uses ASL sign to communicate.

> He likes to carry a little tablet around for writing when people

> can't sign. This is his email if you would like to email him. He

> likes hearing from other adults with CHARGE.

>

> ,

> E-mail Address(es):

> jjones75@...

>

> mom to 31

>

>

> >

> > 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.

> >

> >

[Guest guest]

lis,

did you think mary kay and clive will be at the conferene? it will be fun to ask

them what is like being throught charge all their live like me. michele s.

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.

>

>

[Guest guest]

" sigh "

I have a feeling my " no more US conferences for at least 4 years " thing ih

ave made with myself isnt going to last.......hehe

[Guest guest]

Michele,

I'm thinking it isn't likely but you never know. It's been at least 2 ago

that Kay last came and I don't think Clive has ever been over from the

UK for one but maybe! I can't wait to meet you.

>

> lis,

>

> did you think mary kay and clive will be at the conferene? it will be fun

> to ask them what is like being throught charge all their live like me.

> michele s.

> 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.

> >

> >

[Guest guest]

Some of the adults on the list have written in a lot and they always make my

day!

>

> oh not to worry being late, i'm really glad my story really make your

> day and feeling positive future for your daughter. I wonder why isn't any

> older charge people ever write about themselve and i like to know about them

> also.

> thanks and you are welcome,

> michele s.

> Re: Fw: introduce myself as charge

>

> Michele,

> I had exams last week and am just still recovering and getting caught up

> on

> mail. What a treat to sit at my breakfast table on a Sunday morning and

> read

> your story. It means so very much to me that you took the time to get that

> all down for us to read. I often wonder about how Kennedy will make out

> when she is older; stories like yours and the other adults' on the list

> give

> me a lot of hope that she will have a bright future despite all the odds

> she

> faces. I can't imagine what it would've been like for your mom & dad in

> the

> 60's to have gone through the whole CHARGE thing. They must've been super

> special people. You must miss them so much, but their positive influence

> is

> evident through your writing, the way you feel about yourself, and how

> well

> you are doing.

>

> Thank you so much for writing and again, I apologize for my late reply.

> Love,

>

> Kennedy's Mom

> www.chargesyndrome.info

>

> On 4/27/07, 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.

> >

> >

[Guest guest]

Michele,

I loved reading your story about you. I'm going to have to read it again

and again. There are just so many wonderful parts about it. Thanks for

sharing.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

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

[Guest guest]

really, i like to read those. where should i find them? is it in newsletter from

charge website? oh i forgot, i didn't sign up the register, did I? just

wondering, michele s.

Re: Fw: introduce myself as charge

>

> Michele,

> I had exams last week and am just still recovering and getting caught up

> on

> mail. What a treat to sit at my breakfast table on a Sunday morning and

> read

> your story. It means so very much to me that you took the time to get that

> all down for us to read. I often wonder about how Kennedy will make out

> when she is older; stories like yours and the other adults' on the list

> give

> me a lot of hope that she will have a bright future despite all the odds

> she

> faces. I can't imagine what it would've been like for your mom & dad in

> the

> 60's to have gone through the whole CHARGE thing. They must've been super

> special people. You must miss them so much, but their positive influence

> is

> evident through your writing, the way you feel about yourself, and how

> well

> you are doing.

>

> Thank you so much for writing and again, I apologize for my late reply.

> Love,

>

> Kennedy's Mom

> www.chargesyndrome.info

>

> On 4/27/07, 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.

> >

> >

[Guest guest]

I know, it is in Australia in 2008? if I can make it to go and good thing is I'm

going to California for my first time. Michele s.

Re: Fw: introduce myself as charge

" sigh "

I have a feeling my " no more US conferences for at least 4 years " thing ih

ave made with myself isnt going to last.......hehe

[Guest guest]

Michele,

I meant mostly just from messages here on the list but the adults did do

speeches at the last conference that were fantastic - I believe they were

reprinted in one of the foundation's newsletters. Contact marion at

marion@... - she'll be able to tell you for sure.

Hugs,

Lis

>

> really, i like to read those. where should i find them? is it in

> newsletter from charge website? oh i forgot, i didn't sign up the register,

> did I? just wondering, michele s.

> Re: Fw: introduce myself as charge

> >

> > Michele,

> > I had exams last week and am just still recovering and getting caught up

> > on

> > mail. What a treat to sit at my breakfast table on a Sunday morning and

> > read

> > your story. It means so very much to me that you took the time to get

> that

> > all down for us to read. I often wonder about how Kennedy will make out

> > when she is older; stories like yours and the other adults' on the list

> > give

> > me a lot of hope that she will have a bright future despite all the odds

> > she

> > faces. I can't imagine what it would've been like for your mom & dad in

> > the

> > 60's to have gone through the whole CHARGE thing. They must've been

> super

> > special people. You must miss them so much, but their positive influence

> > is

> > evident through your writing, the way you feel about yourself, and how

> > well

> > you are doing.

> >

> > Thank you so much for writing and again, I apologize for my late reply.

> > Love,

> >

> > Kennedy's Mom

> > www.chargesyndrome.info

> >

> > On 4/27/07, 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.

> > >

> > >

[Guest guest]

yes the aus confe is acutaly in nzi think i could b wrong but im sure ti is

not so far fromhere right bel about nz christchurc?

>

> Michele,

> I meant mostly just from messages here on the list but the adults did do

> speeches at the last conference that were fantastic - I believe they were

> reprinted in one of the foundation's newsletters. Contact marion at

> marion@... - she'll be able

> to tell you for sure.

> Hugs,

> Lis

>

> On 4/30/07, michele sinopoli

sinopoli74@...>

> wrote:

> >

> > really, i like to read those. where should i find them? is it in

> > newsletter from charge website? oh i forgot, i didn't sign up the

> register,

> > did I? just wondering, michele s.

> > Re: Fw: introduce myself as charge

> > >

> > > Michele,

> > > I had exams last week and am just still recovering and getting caught

> up

> > > on

> > > mail. What a treat to sit at my breakfast table on a Sunday morning

> and

> > > read

> > > your story. It means so very much to me that you took the time to get

> > that

> > > all down for us to read. I often wonder about how Kennedy will make

> out

> > > when she is older; stories like yours and the other adults' on the

> list

> > > give

> > > me a lot of hope that she will have a bright future despite all the

> odds

> > > she

> > > faces. I can't imagine what it would've been like for your mom & dad

> in

> > > the

> > > 60's to have gone through the whole CHARGE thing. They must've been

> > super

> > > special people. You must miss them so much, but their positive

> influence

> > > is

> > > evident through your writing, the way you feel about yourself, and how

> > > well

> > > you are doing.

> > >

> > > Thank you so much for writing and again, I apologize for my late

> reply.

> > > Love,

> > >

> > > Kennedy's Mom

> > > www.chargesyndrome.info

> > >

> > > On 4/27/07, 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.

> > > >

> > > >

[Guest guest]

thanks i'm glad you really enjoy reading my story. michele s.

Re: Re: Fw: introduce myself as charge

Michele,

I loved reading your story about you. I'm going to have to read it again

and again. There are just so many wonderful parts about it. Thanks for

sharing.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

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

[Guest guest]

okay thank Lis, I will ask n. Michele s.

Re: Fw: introduce myself as charge

> >

> > Michele,

> > I had exams last week and am just still recovering and getting caught up

> > on

> > mail. What a treat to sit at my breakfast table on a Sunday morning and

> > read

> > your story. It means so very much to me that you took the time to get

> that

> > all down for us to read. I often wonder about how Kennedy will make out

> > when she is older; stories like yours and the other adults' on the list

> > give

> > me a lot of hope that she will have a bright future despite all the odds

> > she

> > faces. I can't imagine what it would've been like for your mom & dad in

> > the

> > 60's to have gone through the whole CHARGE thing. They must've been

> super

> > special people. You must miss them so much, but their positive influence

> > is

> > evident through your writing, the way you feel about yourself, and how

> > well

> > you are doing.

> >

> > Thank you so much for writing and again, I apologize for my late reply.

> > Love,

> >

> > Kennedy's Mom

> > www.chargesyndrome.info

> >

> > On 4/27/07, 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.

> > >

> > >

[Guest guest]

okay thank Lis, I will ask n. Michele s.

Re: Fw: introduce myself as charge

> >

> > Michele,

> > I had exams last week and am just still recovering and getting caught up

> > on

> > mail. What a treat to sit at my breakfast table on a Sunday morning and

> > read

> > your story. It means so very much to me that you took the time to get

> that

> > all down for us to read. I often wonder about how Kennedy will make out

> > when she is older; stories like yours and the other adults' on the list

> > give

> > me a lot of hope that she will have a bright future despite all the odds

> > she

> > faces. I can't imagine what it would've been like for your mom & dad in

> > the

> > 60's to have gone through the whole CHARGE thing. They must've been

> super

> > special people. You must miss them so much, but their positive influence

> > is

> > evident through your writing, the way you feel about yourself, and how

> > well

> > you are doing.

> >

> > Thank you so much for writing and again, I apologize for my late reply.

> > Love,

> >

> > Kennedy's Mom

> > www.chargesyndrome.info

> >

> > On 4/27/07, 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.

> > >

> > >

[Guest guest]

Thank you so much for sharing this! I'm glad you are part of the group!

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04! and lost her first tooth 4/2007!), and Emma (4).

Dallas, Texas

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.