"How is Alex?", I get asked all the time and never really have an answer. "Fine."? Do you really want to know? "Hanging in there" is the answer I give most often. For a while she had improved so much that I could honestly answer "she's doing well" but we haven't seen one of those days in months. At best there were days when Alex could keep up with me. At worst it was like having a sickly 80 year old in the house. There's never been a time when she could function as a normal teenager. Lately, she spends most of her time in bed.
When she does go out she's brilliant at wearing the mask of normalcy and telling people she's "fine", but it's an illusion. She still believes she may be able to have a "normal" life one day: with a completed education, a full time job, a husband, and the ability to travel. I hope shes right. I hope some day I'll be able to answer the question with "Great, she's doing great".