Wednesday, July 28, 2010

more beautiful than hair...

I (Amy) probably should not post when I am so raw emotionally. I guess I have always run to writing/journaling when sadness overtakes me. I suppose some people probably think I should only post when I have it "all together" or only keep this blog for the cheerful moments, but in my heart, for me to do that would be dishonest.

I DON'T have it all together. (I know that no one does.) While my days are filled with ABUNDANT joy in watching my daughter grow and flourish in her communication and understanding of the world around her, this day has been discouraging for me. And I'm grieving.

There are understandable reasons for my saddness... Marc is out of town for the week at RUF staff training, and I'm single-parenting it. (let me tell ya, I have the utmost of respect for single parents, and especially for those of kids with health concerns or restricted diets...) He is a huge emotional support to me, not to mention a physical help. Also sleep deprivation is definitely at work here, too, because a certain someone is up now at 5:30am READY to tackle the world! :)

But today it was the little things-- trying to actually GET OUT in public, only to be met with
Smiles of pity.
The big kid at the playground says loudly, "Hey- she doesn't have any hair!"

Now, hardly anyone is ever BRAVE enough to actually ASK me about what is happening with my child and why she is bald. (this is a catch 22 because on one hand you DON'T really want them to ask, but then on the other hand you get angry when they're silent, too...)

Meanwhile, MY child is completely oblivious, sharp as a tack!, observing everything and everyone around her, greeting strangers with the warmest smiles saying, "Hi!" "Hi!" at a decibel level that is just slightly higher than appropriate in stores. :) (and she'll continue to say hi until you say it back, you understand...) :) She definitely surprises people by taking them out of their private little "zones" and invites you to look up & enjoy the people around you.

She has no idea that anything is even "wrong." She knows she is beautiful. She knows she is loved. She knows she is a beloved child of Jesus. She is a light wherever we go in this dark world.

And I think that's more beautiful than all the hair in the world.

But today, the truth is, I'd be happy with some hair. When will this end, O Lord?? I'm weary. I don't know what to do. I constantly wonder if I'm doing the right thing. I look back at pictures and feel guilty that I didn't see all of this coming. How could I have known? I am doing everything I can. Things improve. Things get worse again. Things improve. And I don't really know why. No one does right now. We know some things. But not all. It's exhausting. And I covet your prayers not just for Caroline, but for me.

I am more and more convinced that the Lord didn't give all of this to Caroline for HER to wrestle with-- after all, (right now, at least) she is as happy and content as she could be! But it's her Mommy & her Daddy that the Lord is working on right now. We are the broken ones. He has ordained suffering for us in order to bring about His perfect will. And ugh-- it's painful! It's showing me all those yucky sins of pride and unbelief that I carry & harbor each day.

Caroline doesn't need Jesus' healing hand as much as I do. Deep down, I sometimes want to look at those people in the stores and say, "Please stop staring. Stop pointing, would you? Quit whispering about my kid! She doesn't have a problem. It's ME that does! Point at ME! I'm the one who needs help!"

In a little while my sweet daughter will probably wake up from her long afternoon nap reciting her favorite lines from books, or singing "How Deep the Father's Love for Us," or maybe it'll be the "MommyMommyMommyMommyMommyMommy, MOMMMMMYYYYY!!!" alarm, but when I open that door, one thing is sure: I'll find her grinning at me from ear to ear.

And it'll all be okay. :)


  1. Today when we were visiting you guys I have to tell you that we had such a good time. Our little girls are so distinct and beautiful! I love Caroline's perfect head... yes I said perfect!!! and I think if anyone spends a few minutes with her they'll look beyond her perfect head to be amazed at her vocabulary and personality! You have a child who loves to have fun (at 5:30 am!) and has a heart that shines out bright for everyone to see. And it's ok to be mad... I get mad... everyone does! So get mad and write about it! Emotion is a good thing!

  2. Sorry to hear that today was such a rough day. :( Hang in there. Thank you again for opening your home to me last night. I felt like our goodbyes were a little rushed this morning. Hope the rest of the week gets better, and that you continue to see more and more encouraging signs to help keep you going. Love you!

  3. amy- I can so relate. I find myself pleading for Annie's hair and health all of the time, never really knowing if I am asking for the right things. God loves our babies, I do know that. I wanted to tell you that I got connected with a young mom recently, who lost all of her hair when she was 2 years old. She has written me the most encouraging emails about her story- she ended up running track for Auburn, met her husband- who encouraged her to ditch the wigs and go bald- and now has two beautiful children. Of course, it doesn't change my longings for Annie to have hair again- and she even said that her parents to this day still pray that she will get her hair back- but she says she does not want it- that it has shaped and defined her ways that she sees as utterly important. All that to say- I am walking right there with you. hang in there.

  4. Still praying for all of you Amy and knowing that our God has sweet Caroline in His big hands. God has indeed given Caroline just the mommy and daddy she needs. He knew you could get her through this trial in her life when He gave her to you. Keep looking to Jesus and loving Caroline.

    By His grace,
    Susan P

  5. I guess that is the dangerous part of being a mommy - knowing that God can use a child's suffering or "problems" to work in our own hearts... that, and being unable to "control" the situation perfectly. (I guess I will find out in a few days or weeks.)
    You are simply amazing, Amy, and whatever God is working in your heart through all of this is only making you more and more beautiful inside and out. Even your music reflects the deep joy that you've experienced in the "depths of woe." Keep trusting. I love you.

  6. if it makes you feel any better when I see pictures of Caroline, I mean, I "notice" the baldness but I'm more captivated by her smile and eyes than anything. She's beautiful.

    But, I too hope that she will have hair sooner rather than later and for peace of mind for you all.

  7. Amy,

    You are one of the most Godly, loving, inspiring, and focused women that I know. It is ok to be weak. It is ok to get mad. It is ok to be frustrated at times too. However, God's plan for us is PERFECT even though at times we don't see it. I know I don't have any children yet so I may not truly understand your pain, but I do understand being a woman with feelings and hurts. My heart goes out to you. My prayers are always including you. Your daughter is such a shining light in this world, with or without hair.