Thursday, March 25, 2010

week 2...

Yesterday marked our 2 week marker of being gluten-free, and I suppose I should give a quick update on how everything is going.

First, an update on Caroline: obviously, no new hair growth or follicles. Still slowly losing hair. (but that would be a miraculously quick turnaround, so we weren't expecting differently...) Her skin & complexion have improved- it is less pale and has a healthier look to it. Her eczema is better than before, yet has not gone away. This might be a little TMI, but let's just say her bowel movements have improved tremendously. Good things! We'll see how things continue...

While the food planning/preparation part of this has gotten a little easier than last week, the emotional part of things has been much harder. Perhaps that's because we were so much in "survival mode" the first week, we didn't have any time to feel??

When I'm with Caroline alone, none of this whole ordeal matters, you know? We go through our normal everyday activities: playing, reading, coloring, running errands, eating, etc. We don't talk about hair loss or appearance (except when she hears how beautiful she is!). My love for her goes SO far beyond her hair, so it really doesn't matter when we're alone as a family.

But it's when she's napping or asleep at night, in my quiet moments, or when we're out in public and she takes her hat off in front of strangers, or in a conversation someone doesn't mention it or talk about it when it feels like it's the elephant in the room... that's when it's hard for me. It's just an ongoing battle of sorrow, fear, anxiety, and disappointment in my heart. Nevertheless, we press on and just do what we've gotta do, one day at a time.

I love it that our RUF students have been so great with Caroline. I watch them each week as they love her, play with her, and treat her as if she's the most beautiful princess in the whole world. It's enough to almost bring me to tears sometimes. I'll overhear them telling her that her hat is cool, and I think that's a large part of why she's doing better at keeping it on. (ha!)

I'm seeing that when you feel like you're in the desert, many times it's then that God provides and pours out blessings. Just this past week, one friend at church cooked a HUGE meal FILLED with gluten!! (for me & Marc, of course) and if you've ever received a meal during a rough time, you know that it literally tastes like grace. It was wonderful. Another friend at church showed up on Sunday with 4 BAGS full of gluten-free groceries for Caroline! Grace, grace! Another long-distance friend sends an article on GF recipes. Another friend sits with me in my living room every Tuesday afternoon while Caroline naps, listens to my heart and tears, and is walking with me through it all. And there's more people and things that I could mention, but it's amazing to me how many different ways God uses His people to communicate HIS love to me. How can I complain? He is with me even when I may feel abandoned.

Many of you that are reading this blog are a gift to us from the Lord as well. We are grateful for loving, supportive family and friends that are grieving with us, hoping along with us, and praying for us. We love you!


  1. I want to see my beautiful princess. Where are the pics? We are with you in prayers, mind and spirit. Love y'all

    Nanny & Papa

  2. I'm sure her hair started falling out weeks AFTER her system was attacked. Now that her system is healing, I expect that her hair will start to re-grow in its own good time. God made our systems to send the important nourishment to the places that need it most and then to places we COULD live without like hair and nails.

    But she IS beautiful--with or without a hat. Anyone who spends any time with her at all finds her beautiful beyond description. Love, Mamie

  3. thank you amy for the scientific and the spiritual/emotional update--good to hear and yes, we (a whole, whole load of us!) will continue to be praying for you all!

  4. The ladies at Faith meet every Wednesday for prayer and we continue to hold you all up in prayer each week. Love you guys.

  5. Hi Amy.

    We don't know each other. I came to your blog from Jackie Park's (I'm sorry, I tend to be a blog jumper). I got hooked on your blog for many reasons, one of which is our daughters are only a month apart. Anyway. One of my friends posted this website on her FB status and I thought of you and Caroline.

    Not sure if you've heard of it or not. And, to be honest, I didn't take a whole lot of time to check it out but there are gluten-free recipes. From my brief overview it seems she is a mom with a son (as well as sister and mother-in-law) who have celiac. I hope it helps.

    Caroline is a beautiful little girl - inside and out. And she looks adorable in all the hats.

    Praying for a full, permanent regrowth of her hair.