Tuesday, January 11, 2011

i don't know...

She finally asked. This morning I (Amy) was blow drying my hair, and as usual, I had a toddler climbing all over me. (When I'm putting on my makeup nowadays, she likes to go fetch her "lotion,"--aka Aquifor-- climb into my lap, look into the mirror oh so seriously, and proceed to smear it all over HER face... like she's putting on make-up, too, you see.) :)

I've known it wouldn't be long before she started asking, but didn't know today would be "the" day. And then she said it.

"Mommy, why did my hair fall?"

"What, baby?" I said, pretending I didn't hear her, just to make sure that's what she said.

"Why, why did my hair fall?"

Alright, she said it. Here we go. Okay, quick! What do I SAY? Oh, don't be stupid, Amy. You know what to say. Tell her the TRUTH, silly. (is there really any other option?)

"I don't know why!" She wasn't really disturbed. Just innocently asking for an answer. I probably could've just left it at that, but I felt the need to say, "It's alright. You're my beautiful girl. And some people just don't have hair."

Content with my answer, she went back to playing with every little piece of my make-up that I constantly remind her not to touch. And that was it.

Of course over the next 10 minutes, I was fighting a myriad of emotions: sadness, anger, self-doubt, you name it. But the truth was THAT-- I DON'T KNOW. I. DON'T. KNOW. I have NO idea why she is bald! At one point I thought I knew. I've had a hundred different theories and tried a hundred different things over the past 11 months. But now I'm done guessing. I can't do it. I'm not a doctor. I'm a mom.

If all this is "just" alopecia, then it's a genetic auto-immune response where the body decides to attack its own hair follicles, but the person is otherwise totally healthy. (no, there is no alopecia in the family history) She could conceivably grow hair again at any point, only to potentially lose it again. Or she could just remain bald for her lifetime. There is no predictability. There are very few treatments that actually work. (although the good news is that there is some exciting genetic research happening out there right now with alopecia! This past summer geneticists were able to pinpoint the alopecia gene and they were shocked to find that it was most closely linked to 3 conditions: celiac disease, diabetes 1, and rheumatoid arthritis. So now they are working to learn more about the relationship between these conditions and alopecia. Which also makes me wonder if Caroline's celiac bloodwork that initially showed some possibilities could've just been the alopecia stuff all along...)

And if this is some kind of intestinal/malabsorption thing, (like we used to believe and now we aren't so sure anymore) then we need to figure out what is happening and resolve it. (we have an endoscopy/colonoscopy scheduled for early February to rule out the gastro stuff) Off of all the restrictive diet stuff, (with the exception of nuts & seeds) she has been doing about the same as before. Mushy diapers, but thankfully not as horrific as they were before. So who knows?!? I'm done speculating for now.

I have no answer other than "I don't KNOW." And today, at least to her, that was okay. :(


  1. She's soooo smart and so socially aware that, to me, it seems like a good thing that you can talk about it with her now. Things that are kept "hush hush" can be more damaging. If this is a life time thing, you are equipping her with the words and the attitude to face it. She has such a winsome personality that all the other little kids will want to go bald to be like her.

  2. Talking with her will help her to accept that she doesn't have hair. There is nothing to be hush, hush about. If God allows her to be without hair, He will equip her with the character, ability, grace and courage, and whatever else it takes for her to live each day to be the beautiful little girl that she is and grow up to be a wonderful young woman. When we accept things as they are, so will she and everyone else that matters. Those that don't will not matter anyway. We love y'all.

  3. Amy- I cried reading your post. As Annie and I have similar rituals in the morning- and she so securely will take my hair clip or something and try to put in her "hair". When all her tests came back normal last week, my stomach just sank. I accept this reality in bits and pieces- as I am sure our daughters will, too. We live in encouraging times, as you mentioned all the research happening. There's a lot of hope for our little ones. I hope they get to meet one day (and us, too, of course)

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  5. I am not sure how I came across your blog, I think one of my readers linked it one day. I just wanted to say that your daughter is beautiful and instilling that in her is such a wonderful gift. I think talking about it IS good. I understand it must be difficult. Our youngest has had a very tough year and when he was at his most sick point and darkest days our middle child would ask what was wrong with him and it was so, so hard to say "I don't know". As moms we feel like we are supposed to fix things and it just doesn't always work that way. All that to say I'm posting to send you a hug!