Tuesday, January 18, 2011

It's Been a Year

On January 12, 2010, it marked a year since I first found the quarter size bald patch on Kaylie's head. It was an emotional year for me. I cried a lot for about the first 6 months. A lot of people told me it was no big deal and things could be worse. I know they could be but I had the right to grieve didn't I? Sometime in the summer I gained some acceptance of it and resigned myself to the fact that she might be bald for the rest of her life. At that point, she had lost all the hair. I also stopped reading about alopecia and everyone's personal struggle with it. That probably stressed me out the most, hearing how everyone struggles with it and how I didn't want that to happen to my daughter. Then in July we spotted the fuzz growing back on the top of her hair and I gained some hope back. Slowly with her hair growing back, my hope keeps growing back too. I just hope it doesn't get crushed again.

So where are we a year later...here.

You can see hair is growing back on the top. Hair on the sides and back are taking their sweet old time. I spotted some fuzz on the side today so that is promising. You can still see circular spots a clear sign of the alopecia. But of course all of this new hair can fall out again and we start the cycle all over. The unknown is what gets you.

I stopped using the cream we were using. I wasn't seeing any reaction like it was supposed to cause so I figured what's the point? Her body clearly got used to it. Even without the cream, growth is happening. That's a good thing.

Kaylie knows her hair is short but she doesn't know that it's not supposed to be like that. She is not self conscious of it at all. I have told her she has something called alopecia where her hair doesn't grow but she doesn't quite "get it." She has never asked me why other people have long hair and she doesn't. It's funny b/c she plays with my hair from time to time pulling it back into a ponytail and messing it up but never asks for her hair to be put up. I actually have not put it up in pig tails since January 12th of last year. Kids in her class have never asked about it. I do see older kids--maybe age 7 and up looking at her trying to figure out just what was going on. No one has ever asked me about it either. Kind of strange I think. I don't know if they are just avoiding it or what but then again I probably would never go up to someone and ask either.

Oh and you know what? Her hair actually gets messed up now. I actually have to do her hair. I had many months of not having to do anything to her hair. It feels good but at the same time, man having no hair was so easy!

How I'm handling it: I'm trying to be strong about it. I just tell her she is beautiful every day because she is! I need to build up her self confidence as much as I can. When she asks, I will tell her. I am hoping all the hair grows back before then. :)


Becky @ Our Sweet Peas said...

You are right she IS beautiful. I love that children are not self-conscious. Alex has started to show a bit of it. He falls and looks around. It is a bit heartbreaking to see that innocence go. What a blesssing it would be for each of you if it is better before she becomes aware of it. I don't know about the condition so that may be a very naive statement. I hope that God give you adequate grace to deal with whatever ends up happening.

Linda said...

I'm sure it was a very emotional year for yo. :-( You are very strong and Kaylie is beautiful.