Just had a geneticist appt for Lili, we have been seeing him for over 8yrs. Lili has had so many tests and still no answers re a diagnosis. Today he said she is definitely one very unique case and has pledged that he will try his very best till his dying day to get some answers. After a good chat with my mate Jo I am definitely taking this as a positive none of us know how long we have and really for me this only drives me more to give her and her siblings the best life possible. I feel pretty lucky that I have a daughter that is so unique, with so many people living their lives to fit in with each other losing their identity. While we have the gift of life, it seems to me the only tragedy is to allow part of us to die - whether it is our spirit, our creativity or our glorious uniqueness.
Posted on: Thu, 03 Apr 2014 02:04:27 +0000
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