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!".

But, you look so calm.....

It never ceases to amaze me at the comments I get when someone finds out I have 14 children. I guess I should be flattered when they say things like, "you have 14 kids?! But, you look so nice and calm and you have all your hair!". I mean, really, what do they expect a woman who has 14 children to look like? Clothes all wrinkled and disheveled, teeth rotten and missing, and the 3 or 4 scraggly hairs she has left to her name as white as the driven snow? It makes me wonder if they've actually seen another mom of several children out there that really DOES look like that! You just have to wonder what is going through their minds when they make comments like that. Then, it's usually followed by, "I only have 1 (or sometimes 2) kid and he/she drives me CRAZY, I don't know how you do it!" Yeah, well if I allowed my 14 acted like their 1 or 2, I'd be on that funny farm with them. It seems every week when I'm grocery shopping there will be this one little guy, bless his heart, in his shopping cart screaming bloody murder while is mother calmly tries to ignore him and go about her shopping, or she is saying something like, "Now, Johnny, I don't know why you are acting like this, you know better!"......like it's a totally new thing for him and she just doesn't know where in the world these actions have come from. I know exactly where they came from. Little Johnny will throw those fits in the grocery store because he's allowed to throw them at home and usually ends up getting his little way. I don't know how many times I've wanted to walk up to that poor mom and say, "You know, I have 14 children and not ONE of them has ever acted like that in a store", or anywhere else for that matter. Now, don't get me wrong, my children are NO angels, but they DO know that kind of behavior would not be tolerated for one minute, so they don't even try. It starts at home. That kind of behavior has to be nipped in the bud at home when it's tried, then little Johnny won't be pulling that stuff in the grocery story, at least not more than a couple of times anyway :-).

I hope I don't live to eat these words some day. Our little Emma who just turned 2 years old not long ago and has Down Syndrome, has a hair trigger temper and likes to try and throw a fit at the drop of a hat. She not only can scream with the best of them, she has a very loud, guttural, very annoying cry (all my Downey angels have had that same cry). So, if I'm ever in the grocery store with her and she starts in, I'm likely to have one of those dear young mothers coming up to me and lending ME some advice! Oh wait, not to worry, that's the beauty of a big family, I don't have to take Miss Emma with me to the grocery store until she learns better (which may take much longer than most). I have plenty of built in babysitters! Maybe that's why I can look so calm and put together, I have the option of taking some or all with me or not. Come to think of it, I think I've always been by myself or with hubby when those comments are made. Hmm.....