It's been the emotional challenges that have been WAY harder than the dietary ones. NO ONE wants to watch their child lose their hair, eyelashes, & eyebrows over a period of months until they resemble a cancer patient. NO ONE wants their kid to be the one that just looks sick when every one else's daughter has long, beautiful flowing locks of hair. NO ONE wants to live in the ambiguity about exactly WHY any of this is happening, and wonder what else you can do to get answers or at least make it STOP.
It's been a tough journey for me (Amy) personally. It's brought up so many idols & expectations in my heart that I didn't know even existed before. Facing something that I honestly can't "figure out" or "fix" has been so humbling. Sanctification (the process of being made more like Jesus throughout life) isn't an easy thing. But thankfully this is redemptive suffering.
Each Tuesday I have been so blessed to have an older, MUCH wiser woman come over to my house while Caroline naps to be what I call my "living room friend." She is so wonderful to just SIT with me, you know? She doesn't feel the need to fix me, or offer me empty advice, but she listens. She cries with me. She asks questions. She wants to understand. She helps me see into my own heart. We talk about suffering, about pain, and about how God's love and plan include that. I have gleaned so much from our times together, but in our time together yesterday, a few things particularly stuck out to me that inspired me to write and I want to remember.
A phrase that my "living room friend" used yesterday that REALLY resonated with me had to do with "adjusting my eyes." Whereas this culture will look at my 90% bald-headed child and perhaps think of words like "sick," "unhealthy," "abnormal," or "unattractive," it is MY challenge to adjust my eyes and see her as Christ sees her. Hair is irrelevant to Him. As my entire lifestyle now must be centered around "what do I feed this kid at each meal so that hopefully her body will heal and she'll grow hair again," my spirit needs to find rest and ultimately trust that THIS is how God has knit my daughter together to look. (at least for right now.) She is not lacking in anything. SHE is beautiful, regardless of what the culture around me would say. He knows exactly what is happening to her when I don't, and He is guiding all of us through this seemingly-awful journey. It's been a battle, but not just for hair or health. It's been a battle for MY heart.
To me, "adjusting my eyes" means training my eyes to quit looking at her as if she's a science project. "More hair gone today." "Eczema flared up again." Instead of looking into her gorgeous brown eyes with deep love and affection, I find myself looking for any minuscule little hair that might be growing back in on her scalp. And while it's important for me to stay on top of things that are going on in her body, I need to stop focusing on the RESULTS. I'm not called to fix it. I can't, and that makes me feel like an utter failure. I'm not called to make the results happen. I'm called to be faithful and do what I can for my child. One day at a time. (that's the hard part)
Don't you love it when you get those glimpses of grace? When your present circumstances aren't swallowing you up and you're able to stand back and look at things from a bigger perspective? Oh, may this kind of clarity carry me through the next several months, Lord! (or at least until next week maybe??? he he) Praise God for His mercy and his kindness, but especially for his LOVE. May my love for my sweet daughter be more of a reflection of HIS graciousness to me. And while I do everything in my power to serve and help her, I must leave the results up to Him.