I have to say I have done some reading on Aicardi Syndrome. I had never heard of it before but sounds like it would make life a rough road some days. But I do agree with you life is much richer and blessed with the journey. I am a mom of a 25 yr old child just diagnosed with Aspergers Austism....it's been a journey and I have met some wonderful ppl and had great experiences along the journey to get him what he needs. I can only imagine with something so rare how much you go thru to get the care and help you need. (((huggles)))
But it sounds like she seems to do some normal kid stuff...stay up late & sleep LOL She sounds like a joy to have around on the average day when she's not being typical teenager girl moods....I know I wanted to hide from mine when she was a teen LOL
I'm a material girl....Want to see my fabric collection?