[tri-med] Not a medical dictionary....

----- Original Message ----- 
From: "Katy Roberts"
> Karen hope you don't mind me asking but are you a
> natural walking medical encyclopedia or is it all
> steming from your experiences with Alex?

Nah - its a combination of things.
* I have a type A personality (and I can get pretty anal at times - ask 
Tracey she saw me on the weekend and I am not my usual self, havent been for 
a while. I am very anal and cynical at the moment)
* I am also a cancerian and have all the cancerian traits (good and bad), 
especially if anyone threatens my family - you are all my family.
* I like to listen to others. You learn by listening.
* I worked in the disability field for many years before Alex was born (and 
had never heard of trisomy 18)
* I have lived and breathed trisomy 18 for the last 13 years.
* I have had to fight tooth and nail for Alex to have even the most basic 
rights and the best way to attack injustice is with fact. To get fact I had 
to learn, and fast.
* I used to be a doormat. I didnt like it so I decided to change. Now I 
consider myself a doorway, you get a better view.
* I am anal about accuracy in information.
* My strongest belief is that we are all entitled to accurate, unbiased, 
easy to understand and complete information about everything.
* The next is that we have been given (by God or whoever you believe in) is 
the right to self determination, to choose for ourselves, whether its right 
or wrong, about what we do in life - and we should take it with both hands 
and fight to keep it. No one, not man woman or government should take that 
from us. (I am getting pretty cynical that governments are trying to take 
that away - but thats getting a little political. I strongly believe that 
many doctors do take that away). Our only weapon is knowledge - see its a 
circle.
* I live by the creed that we should do unto others as we would have them do 
unto us in everything regardless of my own personal beliefs.
* I have a pretty good memory and adore trivia. My brain just stores that 
sort of stuff.
* My eldest daughter was born with a genetic (but totally unrelated 
condition). That was 30 years ago and doctors told you nothing, you simply 
accepted that they knew what was best. I hated that - to me knowledge is 
power. 20 years before my daughter was born my sister died from the same 
problem - so long before Alex I had a vested interest and reason to gain 
accurate knowledge.
* My middle daughter was the victim of an inaccurate diagnosis and doctors 
not explaining things fully. Thats why I changed professions and went to Uni 
as an adult, I wanted to help parents understand what the medical profession 
couldn't or wouldn't explain. Little did I know that I was being prepared to 
help trier parents understand. I do believe that all things happen for a 
reason.
* I am old, I started reading at the age of 3 and I read, read, read 
anything and everything I can lay my hands on - even the cereal packet at 
breakfast!! As a result I have gathered a lot of useless information in my 
life............. and thats probably the biggest reason. You guys are just 
unlucky enough to get bursts of it.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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