Thursday, January 20, 2011

a life without hair...

My daughter is a rock star. Plain and simple. Wherever she goes, people are truly fascinated by her. Yeah, sometimes it's because of her lack of hair. But truly, more often than not, it's her HUGE, social personality that shines through. You can't HELP but notice CAROLINE first, not the bald head.

Take today for instance. Our family made a quick trip down to Duke for a dermatologist appointment. And as the nurse is walking Caroline down the hall to our exam room, I hear my daughter telling the nurse (who is, of course, all ears...): "I'm 2. But I'm almost 3. My birthday is on February 18th. And Leah's is on February 16th. And I'm gonna have a birthday cake. What's your name?" ha! My kid may not have hair, but she MORE than makes up for it in her beautiful spirit. She is amazing. Hardly ever does a day go by where Marc and I don't look at each other and say, "She is truly an amazing girl.."

So we found a dermatologist that we LOVED today. Kinda crazy that he had bad news for us, but we still walked away feeling SO refreshed. He listened. He explained. He understood. He diagnosed. He was so respectful of our knowledge and even asked if we were doctors or nurses ourselves! (ha!) He gave me his email address and encouraged me to send him any research I could find on the connection between alopecia and gastro stuff. Here he is--the veteran at Duke University, and he said he wanted to do some research for us this weekend (!) & "hit the library" to do his homework on our behalf.

The diagnosis wasn't anything new or shocking: alopecia totalis. (loss of all scalp hair, but not all body hair) Most cases of alopecia are just genetic and have no rhyme or reason. The person is otherwise completely healthy- for whatever reason, their immune system has tricked itself into attacking its own hair follicles. Did any of you happen to see the Miss America contestant, Miss Delaware, this year? She has alopecia and prefers to go bald! (except she wears a wig sometimes for competing)

We also already knew our prognosis: not good, due to 2 factors-- Caroline's age and the extent of the hair loss. When people develop a form of alopecia later in life (teens, adults, etc.) they are more likely to see a pattern of regrowth (and potentially loss & regrowth again and again) throughout their life. The younger you are, the less likely you are to see it come back, though it is always possible. And because her hairloss is so extensive, it also becomes less likely for regrowth. (the good news is that because she lost it so young, it actually helps in her acceptance of it)

Bottom line is: we're probably looking at a lifetime without hair.

Today was the first day of the long-term acceptance of alopecia for me, most likely without any underlying cause. It's a far cry from where I've been over this past year as we thought we were fighting some type of intestinal malabsorption/deficiency. Right now that is not seeming to be the case, particularly now that Caroline has gone back on all foods and things have not really declined (nor vastly improved, either). The jury is still out on that, but I am thankful this dermatologist wants to look into that for us as well.

It does make me wonder what the past 10 months were all about... did our "nutritional therapy" help anything? I guess it certainly didn't hurt her. And for all that the Lord taught me during that time, it really was worth ALL the stress and inconveniences. (and oh, I can't BELIEVE how taxing it was on us, but when you think you have to do it, you just do it!) And to be honest, looking back, I don't think I'd change a thing. I'm pretty dang proud of myself. I gave it my best and I gave it my all. I learned SO much. I'm not the same person I was. And it was through all of that, we discovered Marc's issues with gluten. Funny that while I thought I was helping my daughter, it was actually my husband who maybe was the most helped.

Now our focus has to turn away from food and toward helping Caroline grow up without hair.
I pray she'll ALWAYS feel like the rock star that she is now!

I pray that God will give us the wisdom to know what to say and how to guide her through this at each stage in life.

I want Caroline to know that she is just as beautiful when she ISN'T wearing a hat as when she is.

I don't want her to face any shame about her appearance. She IS gorgeous, hair or no hair. (as one of our students said, "She rocks the bald!") :)

I must not let the approval of others drive my insecurity about this, but instead, rest firmly in the acceptance and justification we have from the Lord. (Not as easy to do when I see someone staring in public, or I'm around a bunch of moms gabbing about their kids' crazy hair stories, and I'm tempted to blurt out, "Oh yeah? Well at least your kid HAS hair!"...God, give me grace.)

I know the Lord has a special plan and a special place in His kingdom for Caroline. His plan for her didn't stop at her adoption. It continues on, even in times of darkness and tears. He is going to use her in ways that I never imagined. She will learn lessons about grace and the Gospel in far more powerful ways because of this. I'm not naive to think there won't be struggle and tears, but I pray that God will be gracious to us as we begin to process and figure out what this means for us going forward.

p.s. One more thing-- regarding the loss of skin pigmentation on her legs, the dermatologist said it was NOT vitiligo, but a result of bad eczema. Many times eczema can kill pigmentation, but he said it will come back! (yay!)


  1. Amy, I am SO glad you finally had a positive experience with a doctor even though he didn't have great news for you. I hope the appointment with him makes you more optimistic about the health journey ahead. I have no doubts that with parents like you and an RUF community to back her up, she will grow up into an incredible young woman with or without hair.

  2. God bless that sweet doctor! Love love love all three of you.

  3. I'm so so so glad that you finally have a diagnosis! What an incredibly long road it has been, but as you know God is faithful!!! As I look out the window here at all the snow, I pray that the long "winter" you have just been through will produce the most beautiful "spring" in your hearts and in your lives. We love you guys so much!!

  4. The fact that Marc discovered his body's gluten intolerance in this all is such a sign of God's providence! That may well add years to Marc's life - have you gotten to the section in The Praying Life where Paul Miller realizes that his daughter's sensitivity to smell caused them to redo their heating system which ended up having saved them exposure to a carbon monoxide leak in their gas heater, that they didn't realize until a decade later. . . . In the meantime, I'm sure there will still be ups and downs with Caroline, and we'll for sure be praying!

  5. With parents like Caroline has, what more can a little star do but be a rock star! God knew what He was doing when He put that sweet little girl in the home of Marc and Amy! God bless you and we are praying for every struggle and for the good times and the bad. The good will always outweigh the bad. With her personality, she will be a trooper. We love you all.

  6. Amy-I am so happy to hear that you have a diagnosis and a doctor you like. We love you, Marc, and Caroline, and agree that she is an amazing girl!

  7. Oh, and I forgot to you are an awesome chef after this crazy roller coaster! Remember how little you cooked or knew about food before!

  8. Amy, I am so incredibly proud of you!

  9. "God only made so many perfect heads; the rest he covered in hair." author unknown

  10. what a journey. I'm praying for you guys. love you and that amazing, beautiful, super-cool Caroline!!!