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. :)