About a month ago, I was watching the latest Narnia movie and I was struck by the line "This is quite and extraordinary thing, you must be quite an extraordiary person" (or something to that effect). This keeps playing in my head.
Extraordinary things happen to extraordinary people.
My daughter is extraordinary. She was born with a spontaneous genetic abnormality, one that is shared by about 20 known people in the entire world. I think she qualifies.
This condition does not have a name, but it has the same result as fragile X, so it is labeled Deletion Fragile X.
The last 7 years have been a mad rush down a blind alley. There are no rule books. Nothing pertains to my kid. Everything is trial and error - from diet and medication choices to behavior and education strategies. Perhaps I am not as blind as I was even a year ago, she finally has a diagnosis, but I still have no idea what is at the end of this alley.
This blog is to help me navigate this journey and share my experiences, but if I am truly honest with myself, it is to help me accept the extraordinary circumstances of my life.
