introduce myself as charge- ELLEN

[Guest guest]

'been severe but is turning rather mild' - Ellen, you crack me up, how

true. I couldn't have come up with a better way to say it myself. You go,

Ellen!

Love,

Lis

>

> i loved it hugs ellen charge in a;us who has been severe but is turning

> rather mild LOL

>

> On 28/04/07, michele sinopoli

sinopoli74@...>

> wrote:

> >

> > you're welcome i'm glad you enjoyed it. michele s.

> > Re: Fw: introduce myself as charge

> >

> >

> > >

> > > Hi everybody,

> > >

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

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

> > >

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

> > >

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

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

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

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

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

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

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

> > >

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

> > with my few deaf friends who sign

> > >

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

> > when I wasn't crazy about working.

> > >

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

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

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

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

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

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

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

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

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

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

> > >

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

> > couldn't see very well at night.

> > >

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

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

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

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

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

> > >

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

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

> > (Matrix movies and Harry Potter movies).

> > >

> > > There you go,

> > > Hope you like my story

> > > Michele S.

> > >

> > >