Fw: introduce myself as charge

[Guest guest]

Hi everybody,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

many CHARGE babies.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

worry what people think.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

forgot I couldn't see very well at night.

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

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

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

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

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

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

Potter movies).

There you go,

Hope you like my story

Michele S.