It's just hair, right?

Hair, I think we take it very much for granted. We comb it, brush it, wash it, dry it, cut it, style it, pull it up, and complain about it. But I don't think many of us could imagine life without it. Well, that's exactly what my sweet little daughter, Mirah (6), is having to do, but she's not imagining, she's really losing her hair. We recently discovered that she had a low thyroid after noticing bald spots on her head. "That's it! That must be why she's losing her hair! It will grow back after we get her thyroid stablized". After half a bald head, half an eyebrow, and hairless arms and legs, we've given up that glimmer of hope. Now we have an appointment with a dermatologist to confirm the diagnosis that I have really known in my heart it was all along. Alopecia. There are three types of Alopecia, Alopecia Areata, where they just lose some or all of the hair on the head, Alopecia Totalis, where they lose the hair on the head, the eyebrows, and eyelashes, and then there's Alopecia Universalis, where they lose ALL the hair on the entire body. Mirah is in contention for the AU, since she's already lost the hair on both arms and legs, more than half the hair on her head, and is starting to lose her eyebrow. Only time will tell if she will indeed lose ALL her hair, so we wait, but at least we're not waiting in a fog of false hope.

All of this sounds really bad, and it is, but it could be MUCH MUCH worse. It could be life threatening, but it's not. And, she could be totally devastated by this and embarrassed to go out in public. But, praise God Mirah is special, and this just makes her more special. You see, Mirah has Down Syndrome and she looks at life and herself through very innocent eyes. She still watches gleefully in the mirror each day when I brush her hair, grinning from ear to ear, just as if I were fixing her hair in the latest and cutest of hairstyles. She happily dons each hat I give her to wear without the slightest thought as to why I want her to wear it. She thinks she looks beautiful. And you know what? She does. We love her and think she's as cute as a bugs ear no matter how much or little hair she has. Sure, my momma's heart aches for her when I think how much more people will stare at her and think she's "different", but she won't notice it and won't let it bug her, so I need to learn from her and not let it bug me either. A friend of mine whose daughter also has this condition told me today that she was brought to tears when a lady in a drs office asked her why in the world she would shave her daughter's hair for the summer! That woman had obviously taken leave of her brain and was not thinking, otherwise she could not have asked such an insensitive and thoughtless question, not to mention the fact that it was none of her business anyway! So, armed with the shared experience of others that have gone before us, I'm determined to be ready with some quick and humorous answers like..."Oh, I don't know, I was just cutting her hair the other day and I got carried away" or "I was going for the Howie Mandel look, don't you like it" or "What do you mean shave her hair, she has beautiful hair, can't you SEE it!?"....come on everyone, you'll have to help me think of some good ones :-). I will of course tell them the truth...eventually ;-).

Now that we have accepted the fact that she may indeed lose all her hair, we're trying to make the best of it. As I said, we're thankful to God that it is not life threatening and that she is basically healthy otherwise. Another praise is she is now on the right dose of Synthoid and her thyroid is stable (she will likely have to be on thyroid medicine the rest of her life). My daughter, Erika, affectionately calls her "Ben" since her hairline resembles that of Benjamin Franklin and my hubby said yesterday that she would just be our little Mexican Hairless, referring to a type of dog :-/....just keepin' it real. I'm just glad God made her the way that she did, so that no matter what, she keeps smiling and saying, "Thanks Mom!".