Wednesday, April 28, 2010

About Kaylie

This is hard to write...

Since January, Kaylie has been losing her hair. She has Alopecia Areata. It's when your immune system starts attacking your hair follicles and the hair doesn't grow. For some it may just be a patch or two, but for others it can be the entire head. It's true Kaylie never had thick hair. It was always wispy and on the thin side, but she had hair all over.

I first noticed the bald spot on January 12. It was the size of a quarter on her left side. I was in denial. I thought it would grow back, so we played the wait and see game. I thought she had maybe bumped her head when she had a pigtail in and it pulled some hair out. Then that spot doubled in size by February. Well, by early March, her hair was thinning out and another patch had developed. We had her tested for things like vitamin deficiencies, autoimmune disorders, and thyroid. All blood work came back fine. So this is where we are at--alopecia. There is no known cure for it and they really don't know what causes the onset either. She may continue to lose all her hair and be that way forever, or it may grow back and if it does grow back, it can happen again. It's a very unpredictable disease. In all honesty, I believe when she had a virus in December that lowered her white blood count level to 2.1 (very low), it triggered something to make her immune system start to attack her hair follicles but I am no doctor. Or else, she just has bad genes (which I feel guilt about).

The reality is that Kaylie shouldn't even be here with us--she beat the odds. I am eternally grateful to have her in my life. I know she could have a life-threatening disease like cancer or something and I am so thankful she doesn't. But on the other hand, I'm so saddened by the fact that she may have to go through life being bald and DIFFERENT. I'm so worried about what this is going to do for her self-esteem. I'm worried about how this is going to change her. Right now she has no idea that she is beginning to look different. We are almost at the point where we need to shave it off completely because she basically is bald on one side of her head and it looks a little silly. I'm just waiting for the day when she asks me where her hair is. It breaks my heart. Bob has made me see that WE are the ones that are going to have to help her get through this and become a self-confident individual. The question of HOW remains.

In the grand scheme of things this is trivial, but I am mourning the fact that I won't be able to brush and braid my little girl's hair. A mother's dream gone. I have read that when people (or parents of kids who) are diagnosed with this disease (or any for that matter) later in life, they go through the five stages of grief--denial, anger, bargaining, depression, and acceptance. I'm not at the acceptance stage yet. I'm happy that Kaylie won't have to go through these stages--or maybe she will at some point, some level, I don't know.

I do know that Kaylie is one tough girl--she's been through so much already. One thing is for sure---she is a fighter. We will try to do our best to raise her with self-confidence.


Meanwhile, I pray everyday that my beautiful daughter will get her hair back.

7 comments:

Linda said...

Kaylie is such a sweet spunky tough girl. I think the world of her and she is soooo cute. Im so sorry you are going through this Liz and I will continue to send lots of good thoughts and prayers that the treatments they try will work. She is a beautiful girl and you are so right that she is a fighter!

Toni said...

The odds are in Kay's favor, some 78-80% of children diagnosed with Alopecia Areata regrow hair within a year of losing it.Kay may always be hair challenged, but she will never be spirit challenged. Bob's 100% right too btw. I knew a child born without the bottom portion of his leg. Tommy's foot was where his knee should be.They amputated his foot, and gave him a prosthesis. He started walking at age 3. I remember his mother, Dottie's, answer to another woman's comment, "how sad, he'll never run," "Oh, my son will run," she answered determinedly. As we walked away, she said to me, "Can you imagine?" And the thing was, Dottie, could NEVER have imagined anything but a full and happy life for her child. She made it happen too. Her son ran, played football in H.S. and college, drove heavy equipment, got married and had children of his own. He never saw himself as anything less than "normal." Even at age 6, at a beach birthday party, he took off his prosthesis, and hopping on one foot, demanded his friends "follow me." He, like Kay, was lucky to be born to parents who could IMAGINE.

cat said...

Liz! I got Alopaecia areata at age 15 - lost my entire head of hair. Was on harsh cortisone treatment and it started growing back. At 17 I had a full head of hair again. It was devastating (I still need to blog about it).

Subsequently I had two returns - at about 21 and at about 25 = each time either after being sick or emotional stress. It is a bugger and truly unpredictable, and each time I was saved by cortisone. I guess they do not want to do it as she is so young. It you want to talk more, please mail me. Make sure she gets to a dermathologist if she is not with one yet.

rachelshingleton said...

Sweet little punkin. I've followed your blog for awhile and I admire your openness in writing about this. You are a good mom and you will be able to help her deal with this. I think you're totally entitled to your feelings about it, too. No advice, really. Just wanted to say hi and that I hope you feel encouraged.

Becky @ Our Sweet Peas said...

I'm so sorry that you are going through this. I am going to pray that kaylie grows back RIDICULOUS amounts of hair! I hope that one day you find yourself not knowing what to do with all of it and having to get it cut! :)

Scott Miller said...

I have heard children's condition is Alopecia are rarely permanent. It may recur later in life but for the most part,m it resolves itself.

You should never feel guilty by the way, you are a great mom, this blog speaks for itself.

Good Luck!

http://www.preemiebabyhelp.com/

debi9kids said...

Oh gosh. I can't imagine how difficult this is for you. I remember when my friend Jess' daughter Tuesday started to lose her hair from cancer and Jess had told me how silly she felt crying over her daughter being bald, when it's "just hair"... but that's just it, isn't it? It's part of that dream we have.
Allow yourself to grieve it and not feel guilty. It is sad.

Then, just remember what a sweet and beautiful (and maybe sometimes bossy) little girl you have been blessed with.

(((HUGS)))

ps Sorry I am just seeing this post. I haven't had much blog reading time.