Wednesday, October 19, 2011


A couple of weeks ago over Fall Break, we were fortunate to take a getaway to Hilton Head Island in South Carolina. Half of our time was just Marc & I while Caroline had a BLAST at Nanny & Papa's house, and for the rest of our time, we had the whole fam together.

I can't even put into words how wonderful it was to put on the brakes in the middle of our hectic semester and just STOP. Part of me thinks that since there is a very blurry line between what is work time & what is family time when you're in ministry, it usually means getting out of town for us to unwind and really relax. (It could also be that we're workaholics, too, and if we're around the house, we're gonna be doing work...)

In the busyness of the semester, I just don't feel like there's been much time to think or reflect. Even slowing down to pray is a struggle. And if this getaway hadn't been on our calendar, we never would have done it. There would be too many things going on around us that had to get done. (Or else it always feels that way, right?)

In getting away, I just love reconnecting with my heart, my thoughts, & my husband. I spend so much time feeling fragmented and in task mode that it feels impossible to just stop the madness and rest. Or think. Or feel. Or remember. Or be thankful. But in reconnecting, I'm able to remember who I am. I'm able to reflect on what I truly love about my life and what I don't. I'm able to have deeper talks with Marc about things like our hopes for the future, our hurts from the past, and where we are in the present.

And what I realized (for me, at least) was that while I long for rest and reflection, it also opens up pain. It means I slow down and have to feel the hurt I usually try to push aside in the hectic.

As Marc and I took a walk along the beach one day, I noticed a little girl (probably age 8 or 9) with long, gorgeous, flowy dark hair playing in the sand. I never even saw her face because she was so focused on the sand as her hair waved beautifully in the wind.

And just as the waves crashed upon the shore, I felt a wave of pain and grief wash over my heart in that moment. My daughter won't ever look like that. My daughter had beautiful brown hair, and it's gone. Again, there just aren't words to explain how terribly frightening, devastating, and awful that whole process was as we had no idea what was happening to our daughter. Thankfully God brought us through that and we are much more in a place of acceptance than we were initially.

But just as the sea is sometimes calm and still, and sometimes it rages so intense, that is my heart when it comes to alopecia. With this new, unexpected world of alopecia, I had to die to alot of natural expectations that any mother would have of their daughter. And now, I am still called to a daily life of humility in this. Here's what I mean...

When Marc & I were alone for our time on the island, we were barely noticed. I didn't really notice the difference until the first time we were out with Caroline again and it came back.

The stares.
The questions.
The reactions.

When your daughter is mistaken by everyone for a cancer patient when she's perfectly healthy, it can be wearisome to even go out in public sometimes. I hear the whispers behind us-- "but she's got so much energy..." (Now hear me out-- most days I kinda enjoy the challenge of confusing people with a bald, but rambuctious, child!)

As Caroline was like a mad-woman energetically throwing herself into the waves of the ocean, a woman and her high school son approached Marc & I on the beach one afternoon.

"Excuse me, but I was wondering what your daughter's condition is?"

As usual, I gave my 5 second shpeel--- "Yeah, she has alopecia, which is an autoimmune condition where her body rejects her hair, but she's otherwise healthy."

I could tell my words didn't matter or convince her otherwise. I hate that. In people's mind, they look at my daughter and assume something is really wrong.

She says, "Well, I don't know where you guys stand, but would you mind if I pray for her? I had diabetes and the Lord completely cured me from it 2 years ago, and so I would love to pray for her."

Be my guest, I thought. But we certainly need prayer for a MOUNTAIN of other things before we need some missing hair!!! "Sure, that would be great. Thank you."

So we prayed with this stranger. And it was nice. Sortof. Her words were beautiful and appropriate, and I was touched by her boldness and faith.

But after the "amens" were said and she walked away, I was left alone with my thoughts. And the pangs of emotion rushed over me again. Am I supposed to be thankful for this encounter? Why do I feel somewhat violated by her reaching out to PRAY for me, for crying out loud?! What kind of reaction(s) DO I want from people, anyway? And should we be praying for hair? I know this alopecia is God's plan for our family, and He has used it in so many ways for our good. But it's also not supposed to be this way, either! We're supposed to have hair! Right, God? This is such a crazy thing to process and sometimes I don't even know WHAT to think.

So I'm still in process. I am in the middle of an ocean of God's providence, and sometimes the waves are still and quiet, and sometimes they are rocking me and pulling me under. Why do I find myself shocked at my grief? I guess I want a once-then-done way of handling this. I want the pain to be behind me.

But the truth is-- it comes in waves.

Nevertheless, this ocean I am in has an amazing undercurrent of love:

"O the deep deep love of Jesus
Vast, unmeasured, boundless free
Rolling as a mighty ocean
In its fullness over me.
Underneath me, all around me
Is the current of Thy love
Leading onward, leading homeward
To Thy glorious rest above."

Marc and I also had some more good conversations at the beach that I am excited to share with you guys soon! So stay tuned.... :)


  1. Amy - waves can also be refreshing and cleaning. And standing up again the waves gives strength! And when the waves are gone you usually are exhausted but should relax and float on the water!
    Greetings from over the ocean ;-) and thanks for the pictures over fb it worked - Elli
    P.S. That lady must have been on a mission! Frightening to me!

  2. Again, reading your words are like water to my soul. I face absolutely totally different circumstances but when you talk about people, staring, questioning, assuming...and the pain that it causes, I hear ya. Everytime I go outside people laugh, point, stare and ask extremely personal questions. It hurts and sometimes its too much to bear. But I sang the words that you wrote at the end of your blog and I remember yet again, His great love. Love you!

  3. When the Darkness Will Not Lift

    When the darkness will not lift
    And my hopes are set adrift
    Over the horizon of this sea
    Waves of trouble crashing over me

    When the fear of what lurks below
    Tempts me to believe I'm all alone
    Being tossed to and fro
    Abandoned and far from home

    But I belong to you
    And none can stay your hand
    You rule the raging seas
    They do what you command

    When the darkness presses down
    And the anchor seems to drown
    Sinking to the bottom of the sea
    With the other end tied to me

    But I belong to you
    And none can stay your hand
    You give and take away
    According to your plan

    I belong to you

    The Joy Eternal: A Sweet and Bitter Providence

  4. Amy, just what you have said in this blog today is the reason why God allows the waves in your life. You are such a blessing to others and such an encouragement. God is using you mightily. Love ya. We love y'all and pray for you every day and sustaining hand upon all of you.