More thoughts about alopecia

Thanks for all the kind comments about Ava! I never imagined I would be shaving my child's hair off but it got to the point that what little hair she had left (basically 3 strands of it) was so matted and tangled that it just seemed to me the best thing to do. My sister came over to offer me emotional support and video taped the whole thing, my tears and all! I will say it was one of the hardest things I have ever done! I'll be honest, I'm struggling with the whole thing. When I took her out in public over the weekend several times, she got so many stares! I feel like I'm already in a battle to get people to accept the Down Syndrome, and now no hair too? In addition to the stares she came home from the soccer games on Saturday with a pretty bad sunburn on top of her head. I thought she was under the canopy of the stroller but she kept leaning forward into the sun. :( Time to start carrying sunscreen in my purse!

I've had several people ask about alopecia, what it is exactly and how it affects the hair. From what I understand it is an autoimmune disorder where the immune system attacks the hair follicles, similar to what chemotherapy does in cancer patients. From what I read it is mostly triggered by stress, again, something that is very difficult for me to hear. I would like to think her transition here has been easy and smooth, but I suppose she has spent the last year basically in a new culture with a new language, new food, and basically strangers that want to hold her all the time. I suppose that would be enough stress to lose your hair. I pray that the hair will start growing back once she has transitioned completely. On the upside, the girl is NEVER sick! I suppose the two have something to do with each other.

Interestingly I met a lady at church on Sunday whose daughter is affected by alopecia. The daughter is 12 years old and, according to her mother, is not bothered a bit by it. She has been completely bald 4 times yet refuses to wear the many hats and wigs her mother has purchased for her over the years. :)

Speaking of hats, it doesn't look like Ava will be one to leave them on either. She thought it was really funny at Big Lots the other night to take her hat off and throw it as far as she could to see Mom chasing after it again and again. On the other hand, she is quite preoccupied with her new bald head and enjoys stroking it all the time.

So, getting to my point in writing this blog post. Even though I am struggling with how people will accept her, the guilt of wondering what stress I have put her through to cause all her hair to fall out, the sunburned head, and questions about the future, whether it will ever grow back, am I doing enough for her, etc....I received a special gift Friday afternoon when Ava got off the school bus, in her backpack, that I want to share with you. It was as if God was saying, So she lost her hair, so what? Look what she is gaining.
(In case you can't read it the note says.....Ava walked from the classroom to the office with her walker. Ava is doing very well with her walker.)
By the way, we have an appointment with another dermatologist on Friday. Please pray this next doctor will give us a better prognosis and hopefully more options.