False Hope...

Although we are so new with this Alopecia thing, I have already experienced two instances of false hope. To start, it is important to realize that in between the unofficial diagnosis from the pediatrician and the official diagnosis with the specialist (which can sometimes take months), google became my best friend. I spent countless hours looking for a cure for a cureless disease. I think I really believed that if I googled my little heart out, I would stumble across something that nobody else had seen. In doing so, all I really did was set myself up for disappointment. You find yourself clinging to the few "success" stories and really believing that that will be the same for your child. So, while I was endlessly searching one night I heard my twelve year old say "OMG Taylor has an eyebrow growing". While in any "normal" house, this would sound like a weird statement, for me it was the most exciting thing to hear. I jumped up from the computer and ran over to her. Before I could even see her eyebrows (I'll blame the "baby weight" on my slow movement), my 12 year old said, "Oh, never mind. It was just a fuzz". I know it sounds ridiculous, but hearing "it was just a fuzz", really made me angry. Not at Torie (the 12 year old), but at myself, at Alopecia, at everything. I was running across a room because of the possibility of a single hair follicle. REALLY?!! One hair created that much excitement?!! I felt stupid. I felt ridiculous. I shut down the computer because the non stop echoing of Alopecia was beginning to take its toll on my sanity (assuming I had any to begin with!!!!). 


The next time it happened, was about a week and a half ago. It was right before the appointment that helped to change my point of view. I was sitting in Taylor's room, rocking her to sleep for her nap. Yes, I rock her to sleep at nap time... she's spoiled, stop judging : ) Anyway, she had just fallen asleep and I was enjoying the silence of the house. I was looking down at her when I saw an eyelash. It looked to be fairly long and I wondered how I didn't notice it before. I felt my heart start beating faster and I wanted to jump out of the chair. I was sooooooooo excited!!!! I went to touch it as gently as I could when I realized it was not her eyelash, but in fact my own... It fell off her eye lid all too easily. I was crushed inside. Once again, I had let this disease beat me down. That incident set the tone for the entire rest of the day. I know that sounds crazy, but it just made me feel so down. Is that what this is going to be like her whole life???!!!! It didn't seem fair, it didn't seem right. 


After we saw the Pediatric Dermatologist and he gave us the "TRUTH" that we needed to hear, I realized it was time to face what this disease was: never-ending. There may be years where she will have her own hair, but just as quickly as it happened before, it could all be gone. My husband and I sat down this weekend and really talked about Taylor's future with this. We came to the realization that we would be better served to assume she will not ever get hair rather than constantly looking and waiting. Everyday she loses what little bit she has left. Everyday it pains me a little when I go to wash her hair and realize that there is less than the day before. I am fortunate to have not ever witnessed the clumps of hair falling out like other people have seen, but I still can see the change. This summer will be a test of our vow to not be impacted by her hair. Assuming the sunlight has an effect, it is likely that some hair will regrow. We have to be prepared for it to fall out and I do not know what that will feel like to go through the process again. All I can do is HOPE that we handle it better each time...