Tuesday, December 27, 2011


Hi Everyone,

I hope you are all well and I hope that Christmas was a very special time for you and your families. I was hoping for Christmas that I would get my 'ALL CLEAR' news from my genetic counsellor. Unfortunately, I heard nothing. I just can't seem to think about much else. The more I search the Internet, the more I keep stumbling over 'scary facts'. I have joined the website Inspire: https://www.inspire.com/ . It is full of wonderful people who are strong and truly inspiring. They have every type of EDS and all of them deal with their symptoms in their own unique and powerful way. I just feel that the unknown is just a huge grey area. As a person who only lives in the 'black and white' areas of her life, the 'grey' just does not suit my personality at all.

Many people believe that everyone is meant to learn a lesson during their lives. It may be to be more caring, empathetic, kind, trustworthy or to have patient. I believe mine is patience!!! Waiting for this news has made me look over my life and realise a very wonderful thing...........I am truly blessed.

I know that people who look at my blog only know the medical facts about me but what you don't know is that I have the most wonderful life. I am a mother to my gorgeous Tristan who is such an incredible, kind, loving and very funny teenager. I am a daughter to a mother that adores me and tells me everyday how special I am. I am a daughter to a father who tells me he is proud that I brought my son up on my own. I am a sister to 5 incredibly talented siblings who I am extrememly proud of. I am friend to the most amazing women who love me unconditionally. And I am a teacher who loves her career and adores the families and the children I have been lucky enough to have spent the last 8 years with. I am truly blessed!

So, no matter what the outcome, no matter what the results, I will always be able to say that I am so much more than the 'genetic cards' I have been dealt. EDS will never just define who I am or shine brighter than everything else I have in my life. Once my results are in I will deal with them because there is nothing else I can do. So hurry up results, hurry up genetic test tube guys in Seattle, U.S.A and hurry back to NZ and to my genetic counsellor. Then once I have them, I can continue on with my blessed life and be armed with all of the 'black and white' facts.

Take care everyone.

Love Rowena XXXX