Tuesday, September 30, 2014

alopecia at 6...

Living with alopecia becomes slightly more complex each year as Caroline grows.  Since she's been bald since age 2, this girl doesn't even remember a day with hair!

But now, at age 6, she's old enough to recognize and understand her differences.  She knows she'll be the only one like her wherever we go.  She wishes there were more little girls like her, and I know she'd LOVE to have long, flowing hair to style and braid like all her friends do.

But Caroline seems to have a good hold on her alopecia right now... accepting it, confident with it, yet not making it her sole identity.

When she draws a self-portrait at school, it's always bald with a big flower headband.  :)

When it comes to other's reactions, though?   That's when I can tell alopecia is on her mind.

I know it's on her mind when she'll ask to wear a wig if we're going to a place where she perceives kids will be.

"Little kids just stare at me, mom," she tells me.  "Grown ups are nice, but it's the little kids I don't like staring at me."

(which is an interesting perspective, eh?)

So then she'll wear the wig out, and still, the little kids will stare.  She's confused.  "See, sweetheart?  They're not staring at you because you're bald!  That's just honestly what little kids DO."

She wears a wig to school for fun every now and then, like an accessory.  But the minute she hops in the car at 3:00, that wig quickly flies off with great relief!  Too hot and too itchy!

I'll also know it's on her mind when I pick out clothes for her to wear.  "Mom, people will think I'm a boy if I wear that," she's told me once or twice recently.

If you were to ask Caroline if she likes having alopecia, she'd probably answer "no" in a casual fashion and move on to the next conversation.  She may not like it, but it doesn't seem to consume her, and I think she knows she's wonderfully and fearfully made by God.  She knows her own struggles and issues are deeper than just hair!

And as Caroline watches her brother cry as he gets his hair washed, detangled, brushed, and styled, I think she sometimes feels more fortunate than jealous!

She's also in a small private school environment that couldn't be MORE supportive of her.  She's just Caroline there.  Not "the bald girl."  Everyone at the school knows her.  (and it's her personal mission to know everyone there, ha ha!)  In God's goodness, the art teacher at her school is wonderful!, and also has alopecia (and wears no wig).  I couldn't be more grateful for Caroline to have a teacher in her life that looks like her and understands life with alopecia.

(The cost of tuition at this school is seriously outrageous, but somehow we will continue to scrap up the money to send her there because I know for so many reasons, it's where she needs to be.)

There was a situation over the summer where an older girl reacted to seeing Caroline at the children's museum by jumping back frightened.  I forget exactly what was said, but a few days later Caroline told me about it, and we processed through the situation together.  For several days following, I found Caroline writing and drawing what had happened.  Nothing breaks this mama's heart like watching my daughter have to deal through instances like these.  I pray God will continue to give us grace for the future.

Caroline knows cognitively that people mistake her for having cancer, but she doesn't yet know what that really means or why people react in the way they do at times.

She doesn't realize why complete strangers walk up to her and tell her how beautiful she is.  She doesn't realize why people will lavish gifts upon her, or why they anonymously pay for our meals at a restaurant, or why they allow her to do things that they would not allow for other kids.  She thinks all this is normal.  She doesn't realize there are actually special privileges from being bald.

On the other hand, she also doesn't realize what an inspiring little girl she is to the world, either.

That her smile, joy, and confidence send counter-cultural messages about beauty to a skin-deep world.  (recently a unidentified picture of her went viral on facebook and received over 171,000 likes...someone happened to see it and tell me about it)

She doesn't realize that simply because of alopecia, her words will be heard, that her life will be noticed and watched.

I hope she'll soon realize that the Lord has given her a special story.  He's provided her with unique insights and opportunities to bring Him all the glory He deserves.

And I pray that she'll grab ahold of His goodness and run.


  1. I just found your blog through my searches on alopecia. Your family gives me so much hope. Our daughter was diagnosed this summer and was bald by August. She will be five soon. She also is bothered by children staring at her. Adults are usually extra nice and kids stare. Some kids have been unkind. It is heartbreaking.

    1. It IS heartbreaking. It's a difficult diagnosis to accept, and just as hard on the mamas as it is on the kids. Something you never expected, I'm sure. I'm sure you've found the National Alopecia Areata Foundation (NAAF) website? You'll want to sign up to receive their updates so you can keep up with the latest research. Hope you can find the encouragement you need during this time-- it WILL get better with time and acceptance. Prayers to you!

    2. Thanks. I can't figure out how to not be anonymous on here. I just ask you to be my friend on Facebook (Vikki is my first name). I don't know how far you are from the Reston VA area, but there is a support group meeting this Sunday. I'm bringing my daughter. I know the group leader has an 8 year old little girl. I'm so glad I found your blog. I did join the NAAF website. I'm praying the latest research will lead to something safe for children.