I can go days, maaaaybe even a week?, without having to explain my daughter's baldness to anyone. Most of the time, people in our small town go above and beyond to tell Caroline how beautiful her headband is, or they'll shower her with stickers, candy, you name it. (which leads us towards narcissism and entitlement, but that's a whole different post...) :)
It's nice being in our usual traffic patterns again, going about our normal routines where most people know us or have seen us before, but last night we decided to try a new frozen yogurt joint, and wouldn't you know it, bam! A fun family outing for ice cream gets interrupted twice on account of alopecia.
I know people are well-meaning. Please hear me out- I know they're coming from a good place. And I especially understand why both the young mother and the older gentleman interrupted our family time last night-- both had an ill son, one with cancer.
This may sound rude to your ear if you don't know what it's like to live with an alopecia kid, but I think people's "kindness" often puts me in an awkward position. These dialogues happen so, SO often, and while I'm not what you would call bothered by them, I guess I struggle with being exhausted from them. Honestly, I'm just sad that they have to exist.
I had never before heard of alopecia, and now I feel like I've been forced to become a spokeswoman for it.
Almost INEVITABLY, here's how the dialogue goes, like it did tonight...
"Excuse me, I don't mean to intrude, but..."
Yep, here it comes. How will they ask? What words will they choose? (I'm always fascinated by this.)
"What kind of cancer does your daughter have?" the young mother asked.
"Is she doing alright?" the older gentleman asked nervously, pointing at Caroline.
Umm, okay. I realize they see a bald little girl and come to the table with the assumption of cancer. So usually my first objective is to try to reassure them.
"Oh, she doesn't have cancer," I told the young mom graciously. "She has alopecia."
"Yes, she's doing great," we told the gentleman. Afterall, he didn't ask for specifics, right?
"What's that?" the mother quickly replied.
"It's like an allergy to her own hair," I explained, to which I'm always greeted with raised brows and blank stares.
The gentleman went a different route. "Well, I know what you're going through. My son...." and he begins to tell us his son's experience with cancer and chemo. We listen sympathetically to his story, (and it's amazing what a connection cancer survivors have to us when they see Caroline!) and then he called out some super-fancy-long-cancer-terminology that evidently revealed we didn't know what he was talking about.
"Well, what kind does she have?" he then asked.
Oh boy. Our cover is blown.
"She actually doesn't have cancer," I lovingly begin the shpeel for what feels like the thousandth time.
But here's where it almost always becomes awkward!!... It seems like almost every time, without fail, AFTER I clearly explain to the person that Caroline is NOT sick, and she DOESN'T have cancer, they still don't believe me!!
"Well," they'll say looking at me sorrowfully, and then they'll continue on as if they didn't even hear me, still carrying the assumption that a bald girl must mean she's sick!
At this point in the dialogue, I've still been given a cancer bracelet, I've still been prayed over, I've still been given doctors' phone numbers, I've still been offered free this and free that. We're fine, people! Thank you so much, but did you hear me? We're fine!
"Maybe she'll get her hair back. Well, keep your head up and keep the faith!" the gentleman told us as he walked away from our table last night.
Okay, thank you. You know, there are probably a number of other reasons that I would be tempted to leave the faith, but my daughter's baldness is not currently on that list.
Thankfully, the young mom had a different approach. "I was just wondering how you talk to her and help her to be confident in herself."
Now THAT'S a question I LIKE!! That's one I'm almost constantly working towards and thinking about, and it gives me a wonderful opportunity to share God's story in our lives.
"Well, we talk alot in our family about how everybody's got something. God makes every person different and unique- I have an unusual birthmark on my leg, Jameson (I point to my baby) has dark skin, Caroline has alopecia, etc. Everybody has something about them that is special and different, and I want my daughter to be confident in how God makes us and to know that you don't have to have hair to be beautiful." Then I went on to tell her a little about Caroline wearing a wig sometimes, but only when she wants to, and right now, it's not all that often.
The mother then opened up to me about her son's illness, (I couldn't pronounce it and didn't know what it was) and how it's left him insecure because he's apparently extremely short for his age.
I couldn't help hoping that Caroline's secureness in being bald was an encouragement to that little family.
And I left that conversation much less "bothered" feeling than the one with the gentleman, perhaps because I felt like I was given an opportunity to share more of my heart, more of my story than simply answering someone's probing questions.
I don't know. It's just such a precarious situation, over and over. It is THE dialogue, and while there are a few variations here and there, it's almost become like a dance I've done a thousand times. You step here, I step there.
So when these conversations are over, I usually choose to debrief about them with Caroline. I think it's important to know what she's hearing and understanding, and I prefer to turn it into training for HER future dialogues.
"Caroline, that mom over there was just asking me about your baldness. I got to tell her about alopecia. And guess what? Her son has something! Remember how 'everybody's got something'?? He has a kind of illness that is unusual, and it keeps him looking shorter than the other kids his age."
I watch her wheels turning. And usually there's some type of question back.
After the awkward "keep the faith" comment minutes later in front of all of us, I turned to Caroline and asked her if she understood that the gentleman believed she had cancer. Snuggled up into her Daddy's arms, she quietly nodded yes. We then explained how his son had gone through cancer, and had lost his hair because of it. We talked about how people are hurting, and it's important to listen to their stories, even if they think something about our baldness that's not true.
She asked if the kids at her soccer camp this week would like her because she has alopecia.
(I'm praying for that one. It starts tomorrow.)
We talked about how some kids might ask her why she doesn't have hair, and what she could tell them. She's pretty shy about talking about it with people. Pray that she'll grow in confidence to that end.
And then, to round out the night, we shared a good, collective laugh about it all over our ice cream.
Sometimes you've gotta laugh.
And you've gotta keep the faith. ;)