Excerpt from My Diary May 30, 2008
I went out to see Sex In The City and came home all sappy.
I went into the girls rooms and kissed them goodnight. I fed their fish and fixed Carly’s wig on her stand … then I wondered why?
Why have both my girls been cursed with something that makes no sense?
Why do they have to suffer through injections, blood work, people staring. Am I doing the right thing?
I remember the look of Joy on Carly’s face when she first put on her wig – her old personality was back! For a moment that happiness erased any doubt … but it itches and it moves around … it fell off at preschool when she was playing dress up and no one helped her! My 5 year old had to pick up her wig and put it in her backpack, by herself. She tells me the story like it’s ok, like she isn’t bothered by it at all.
For a long time I was just amazed by her attitude. Now, I am still amazed, I’m just not convinced that she isn’t bothered by it.
I’m not sure how you learn to deal with this? In the same breath I feel terrible for feeling so upset. Afterlall, they are healthy when there are so many that are not so lucky.
Tomorrow is another day, another injection.