Friday, May 27, 2011

heart check...

I realize I've posted several alopecia blog posts in a row, and as much as I DON'T want alopecia to be what defines my family or especially my daughter, I think it is just where we are in life right now. Between meeting Brittany (the 13 yr. old in our town with alopecia totalis) and completing the alopecia registry, I guess it's been more "in my face" this week than usual, and thus it's caused me to reflect some more about it.

The last time I (Amy) posted, I believe I used the word "acceptance" to describe where I was emotionally in our journey with alopecia. (and may I add that it was a HUUUUUGE leap to get to that point, so I know that the Lord is carrying us through this) But I don't know if my acceptance of it means I have to always be happy about it.

Truth be told, right now it saddens me and it scares me. Not necessarily for today. We're fine for today.

But for the future.

For the day that comes when being bald isn't so "cute" anymore.
For the day when she realizes that people stare at her because they wonder if she's sick.
For the day that other kids will tease my precious daughter because of nothing that she has chosen or done.
But just because she has alopecia. (I seriously think you'll have to physically hold me back the first time I hear laughter or teasing coming out of someone's mouths... and I'm not joking. I love my daughter and you DON'T mess with her.)

I'm fearful about how alopecia will weave into her story. What will her story be? I see many options of stories for her in my head... Oh, but I pray the Lord will use it to grow her and shape her into a godly woman who truly understands things like beauty, and acceptance before the Lord (justification), and that it will provide motivation to truly love & serve people who are different from us. As much as I don't want it to define her or keep her from doing anything that she wants to do, I am not so naive to think it won't be a large part of her story and identity. But I pray that both her adoption story AND alopecia story will only make her a stronger and more beautiful woman in the end. I pray that Caroline's adoption and alopecia are simply ways that the Lord uses to grow my daughter in grace like He has used them to grow ME already.

I'm sure these fears are no different than any of you moms out there as you think about the future of your young children. We all generally want the same thing for our kids, I'm pretty sure. So as I'm tempted to cave into the fear of the future like I am now, I am reminding myself to live one day at a time. (tomorrow has enough troubles of it's own, eh?) And I'm reminding myself that the Lord has and IS using this alopecia to lavish His love upon us. As crazy as that may sound, it's true.

Another thing that I find strange about my heart at this time is how much connection(?)-- is that the right word?-- I feel with kids who have cancer & leukemia. I see their images on posters and TV and my heart BREAKS for them. It's weird, because in a way, that's my kid, but in other ways, it's not at all. We know what it's like to live with the hairloss part, and that by itself is heartbreaking enough. But everywhere we go people think of us and treat us like we are them, so it sorta becomes more difficult to just be "normal," do you know what I mean??

So because people perceive that my daughter is a cancer patient, they tend to go above and BEYOND for her. (It's actually a little ridiculous, if you ask me & while I appreciate all the extra kindness, we just want to be treated like everyone else!) I know people's intentions are great, but it's seriously got my daughter believing that she's a rock star everywhere she goes. She can't walk out of a single store without getting handed a piece of candy or stickers or WHATEVER! :) I know I shouldn't complain, but I can't tell you how many times a clerk or worker at a store will ask me if they can just give her something. (maybe I should start a list of these things to show Caroline in years to come! ha!)

She knows she gets honey sticks at the vegetable stand, a peppermint patty from the pizza shop, oodles of stickers from the grocery store, etc. etc. You get the drift! I know this is also pretty typical for ALL kids, but I sincerely think the alopecia makes it worse. Because if MY kid's asking me for some candy in the grocery store and I say "no," I've got people looking at me like I'm the most cold-hearted mama on the planet and then offering to buy it for her themselves! My prayer right now is that all of this extra attention will not lead Caroline to a complete sense of entitlement. (though I feel like that's a losing battle when it's Mommy & Daddy vs. the entire world...hmmm...)

It's helpful and somewhat therapeutic for me to write these alopecia reflections every so often. (Don't know if it's helpful to be the reader OF them!) It's good to give yourself a heart check every now and then, admitting what is worrying you and what you hope will come to pass... oh, our crazy hearts and how they can mislead us so far from what is true sometimes. There is a wonderful, wonderful hymn we sing in RUF that comes to my mind about accepting the things God brings us, and I think I'll camp out here as I think about alopecia...

Whate'er my God ordains is right,

Holy His will abideth.
I will be still whate’er He does,
And follow where He guideth.
He is my God, Though dark my road.
He holds me that I shall not fall
Wherefore to Him I leave it all

Whate’er my God ordains is right,
He never will deceive me
He leads me by the proper path,
I know He will not leave me
I take, content, What He hath sent
His hand can turn my griefs away
And patiently I wait His day

Whate’er my God ordains is right,
Though now this cup in drinking
May bitter seem to my faint heart,
I take it all unshrinking
My God is true, Each morn anew
Sweet comfort yet shall fill my heart
And pain and sorrow shall depart

Whate’er my God ordains is right,
Here shall my stand be taken
Though sorrow, need, or death be mine,
Yet I am not forsaken
My Father’s care is round me there
He holds me that I shall not fall
And so to Him I leave it all.


  1. amy it IS helpful! thank you for taking the time to write out your thoughts, lessons, and reflections. it helps us bear one anothers burdens and really be journeymates through all of this! we love you!

  2. Nanny & PapaMay 28, 2011 at 3:37 PM


    Love ya'll.

  3. .

    She is making the world-especially yours and Marcs a more beautiful place.