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

You are an amazing woman Karen.
I am on the first rungs of the ladder and I am sure I
can speak for most and say we are very lucky to have
you here with us.
I am going through yet another battle for my son
(nothing as major as some of you) but you are right
lnowledge is power and its a sad fact that ontop of
caring for our kids we have to read and learn most of
the time more than the actual doctors so that we can
try to get the best for our kids.
And I believe the same as you  that things happen for
a reason, even though some times I ask why me, why my
family. Since having my son I have lost most of what I
thought were my good friends and due to this shut
myself off from making any new friends as I feel my
son needs all of me. Mind you I am due to have baby
number 2 the end of November and am worried how I am
still going to fight my sons battles and care for
another child.
I will stop waffling now and just say thankyou Karen
for your info.
Katy son t8 mosaic.
--- Karen <karens@xxxxxxxxxxxxxxxx> wrote:

> ----- 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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