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

Congrats Katy!  You will do great! 
And, thanks to Karen and everyone.  I am learning so much everyday from all of 
you!  I am so lucky to have had Maiya diagnosed so early and to have found this 
group right away to begin my learning!

Take care,
Callie
Mom to Cade (5yrs) and Maiya (T8M, 7 months old) and wife to Mike
Sebastian FL


-------------- Original message from Katy Roberts <basil1_2000@xxxxxxxxxxx>: 
-------------- 


> 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 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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> www.trisomyonline.org 
> Families Helping Families On-line 
> 

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

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