Friday, July 1, 2011

reactions at the sprayground...

(Letter from the editor:
Dear blog friends, we apologize for any inconveniences we may have caused in slowing down the blog posts. Over the past several weeks I (Amy) have experienced a return of my headaches/dizziness/vertigo and even looking at the computer screen for just a few minutes triggers a headache right now. I don't think I need to begin to explain how discouraging and frustrating this is, but I'm hanging in there and trying not to despair... Thanks for understanding!)

Last week I went with some friends to a place called Splash Valley in Roanoke. It's a perfect little-sized water park for me at just the right price. It does have a couple of the big slides for the big kids, but plenty of fun for me, too!


ha ha!

I love my friends, Julie & Lucy!

From Mommy: I (Amy) could just end the blog post there, but I don't think it'd be right to leave it there and not share the entire story of the day. Yes, my daughter had lots of fun, but thankfully she was oblivious to what was happening around us. Here's what I mean... normally when we're out and about in our small town, we go the same places. Everybody's sortof learned who we are and they're not surprised when they see my big-personality-but-bald-headed child. But it's days like going to this waterpark that remind me what it's going to be like living with alopecia.

Here's how the day started. As soon as we got out of the car, one of the boys that came with our group & didn't know us (probably 8 or 9) pointed at my sweet daughter and said, "Is IT a boy or a girl?" IT? Did he just call my kid "IT?" I think the kids were more offended than me and they shouted, "That's Caroline!" He kept staring and then said the meanest thing I've heard about my daughter to date, which I won't repeat but let's just say the words "alien head" were included. I was shocked and didn't know what to say or do, and he was obviously emotionally troubled. One of the girls turned to me and said, "That was insulting!" I could feel my Mama Bear claws wanting to come out, but thankfully I kept my mouth shut in the moment. Since my daughter didn't hear it, I decided to just absorb that on her behalf and let it be.

But as we entered the park, my friend and I saw people's reactions to the alopecia. Stares galore. And not even polite stares. (I mean, if you're gonna stare, at least put a smile on your face!) People's reactions were getting to me, and it climaxed when I saw another mom staring and then literally "shooed" her kid away from us as if we carried something contagious!! At that point, I couldn't help but cry a few tears behind my sunglasses, thinking of the years ahead of us with alopecia. I need some thicker skin. Fast. It's either get angry or grieve. I think it's probably healthier to grieve.

It sure would've been alot easier on me to just cover Caroline's head up and put a hat on her. But I know there are more important lessons for everyone to be learned. It's more important that my daughter knows there is no shame in not having any hair. She isn't accepted only if something's covering up her head. It's more important that people have to deal with their own hearts when they see someone who doesn't look "usual." It's more important for me to learn how to not care about people's reactions.

But it's still hard.

Another woman came up to me saying, "Can she have this bracelet? I want to give it to her because I have cancer, too." I looked down at a beautiful silver bracelet with a cancer ribbon charm attached to it. Before I could utter a word, she said, "She does have cancer, right?" I was grateful to actually get the chance to explain that she actually has alopecia. But of course the woman still gave her the bracelet happily anyways.

I'm sure people aren't even aware of their reactions and how it comes across. And I think we all think just NOT talking about the elephant in the room is the best tactic. But I disagree. I've had friends asked what I consider to be the best reaction, or what I would prefer, and here was one example of a GOOD reaction:

At the waterpark, a young boy (probably 10 years old?) swam over to me and said, "Excuse me, ma'am, but is that your daughter?"
"Yes she is."
SO politely and genuinely concerned he said, "I was just wondering why she doesn't have hair. Is she in chemo?"
(I know that's what everyone's wondering, but THANK YOU for just coming up and ASKING ME!!) "No, she isn't. She has something called alopecia. Have you ever heard of that?" I said.
"I think so. Is that where your hair just falls out?"
"Yes. She had a full head of brown hair, and when she was about 2 years old, it started falling out. So she is healthy- she just doesn't have hair."
I saw his brain processing that for a moment in silence.
"Will it ever grow back?"
"Well, it could grow back at some point, but because she lost all of it so young, it probably won't ever all come back in. So we can do everything the same, just without hair!"
"Oh, okay. Well I was just wondering if it was alopecia or chemo."
"You know what? I really appreciate you coming and talking to me about it. You asked alot of good questions. Thank you for asking me."

Way to go, kid! So mature and so polite.

And there are countless stories of others who love my precious daughter each day. But I'm of the persuasion that we don't need to dart our eyes away or ignore where people are, but genuinely show interest and walk beside them. It's so fascinating the reactions you get from folks. Walk around a city with a bald kid for one day and you'll see what I mean. God, give me grace to continue to accept and embrace this [life that You have called me to. And give my daughter grace and maturity beyond her years...
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  1. Nanny & PapaJuly 1, 2011 at 6:45 AM

    I like to say she has no hair than to think of her as bald. I know she is bald, but that is not a disease. She is a beautiful little girl with no hair for the time being. Amy, I pray for you, Marc and Caroline. God is great and He is good. He will be with you through all of this. We love you and pray for you each day. God bless. See you soon.

  2. Thanks for the lesson. Caroline is soooo cool herself she'll make other girls jealous.

    Hope mama feels better soon, too.