Friday, January 20, 2012

word from the outside...

I can't believe it was one year ago today that we finally received Caroline's official diagnosis of alopecia.

After surviving an entire YEAR filled with anxiety, heartbreak, despair, and desperation trying to figure out what was happening to my child and why she was beginning to resemble a cancer patient, we finally got the verdict that we had been longing for:


While Caroline's hair was slowly falling out, many of you remember she was experiencing a number of other health-related symptoms: TERRIBLE diapers (oh, they were awful!), dark circles under her eyes, lots of eczema, paleness in her face, etc. Various medical tests did suggest that she might have an intestinal malabsorption issue (such as celiac), and with our gastroenterologist's blessing, we decided to launch into a gluten free diet to see if that would possibly help. (I say that so matter-of-factly now, but at the time it was the toughest challenge I've ever been given and I'd say sheer PANIC would better describe it...)

Then ensued a looooong year of "nutritional therapy," as we were seeing small ups and downs in her symptoms. But the hair kept falling out, and no one knew exactly why. All I knew to do was to trust our doctors and keep doing everything in my power to get my daughter "well." During that year, my entire day revolved around food for Caroline--- acquiring it, preparing it, cooking it, serving it, cleaning up from it, etc. When I wasn't cooking, I was tirelessly researching online for answers or in therapy to cope with the emotional toll it was taking on me.

I remember taking Caroline to the grocery store, and each time she would point to the cabinets of doughnuts and say so innocently to me, "What are those, Mommy?"

Just thinking about that time exhausts me now, and it still breaks my heart. It was indeed, painful.

But praise God that He didn't leave us there. Little could I feel His leading at the time, though intellectually I knew it was there. It's only in looking back that I can now see tremendous blessings in what we experienced. It's weird to say it, but in some ways, I needed to go through that. It continues to shape so much of me even now.

It was a year ago today that the doctors at Duke Children's discussed Caroline's case, and our dermatologist (whom we LOVED) gently gave us the verdict:

Caroline has alopecia totalis. She's probably looking at a lifetime without hair, but she is completely HEALTHY. (Turns out the horrible diapers & other symptoms were due to an intestinal parasite that we were able to treat easily.... so at least we weren't crazy thinking something was very wrong intestinally for a time!)

After all the hours upon hours of worry, of researching, of doctors appointments, of COOKING without end, of crying out to the Lord.... the message I got on January 20, 2011 was


Really? Really? my heart wondered if this was really true.
Are you sure? (I'm such a second-guesser by nature.)
I don't have to DO anything?? (I'm also a do-er by nature, too.)
How can I be so sure that what YOU'RE telling me is THE truth? I couldn't help but think.

But he was right. And I had to trust. Not my feelings inside, but trust this word from the outside.

I thought my daughter was sick.
The word from the outside said: she is NOT.

I have to keep DOING- this all rests upon ME!
The word from the outside said: STOP.

But something is really WRONG.
The word from the outside said: It's okay.

Though we did immediately stop all of the gluten free restrictions on her diet, I've gotta admit- it felt WRONG giving her the stuff initially. I felt guilty, like I was giving up! Now I realize I was still listening to the fears in my heart rather than trusting in the word from the outside.

You know, faith is much this way, too.

I am guilty. I am a mess. I can't get it together.
The word from the outside says: RIGHTEOUS.

But I can't forgive myself. And I can't stop myself.
That word says: FREE and APPROVED.

I'll do better this time. I must try harder.
The word from the outside says: STOP. I already did it for you.

When Jesus justifies us and stamps a HUUUUUGE declaration of "righteous" on us, it's difficult initially to trust the word from the outside. Most often we keep believing the feelings from within.

I was forced to stop all of my efforts for my daughter. And initially it felt so wrong to not "DO" anymore. But one year later, I am still being challenged to rest in those words from the outside, especially those of my Great Physician. I am not called to DO. I am called to TRUST.

Over the past year, there have been set-backs and days when I grieve the fact that my daughter will have to grow up bald. Honestly, people's reactions can be so stupid and so hurtful sometimes. I don't expect there to ever be a day where I never feel the heartbreak anymore, and why should I? It's the HEARTBREAK that turns me BACK to Jesus. What a journey He has given us, and I know He will be with us through it all.

Today we're celebrating our one year of acceptance! No more wondering! No more crazy allergen free cooking! I couldn't love my sweet & fiery daughter any more if she had a full head of wavy brown locks. And you know what she & I ate to celebrate?

Yep. A doughnut. :)


  1. Thanks so much for sharing. This is great and really encouraging.

  2. The Lord, through Caroline, keeps us close to Him. Thank you Lord for giving us such a wonderful blessing. Love y'all.

  3. I was hoping you would celebrate with a doughnut. Love it and love her!