It's been awhile since I (Amy) gave an update on our world of alopecia. And I'm usually more inspired to "write" to you all about it when I find my heart struggling with it. But if I only update when times are hard, then it only gives you half of the story that God is weaving in our lives through Caroline's alopecia, where there is both blessing and sorrow.
So today I'll share some of the blessing...
As I reflect upon the past year or so, I think the best word to use for my current frame of mind is acceptance. God has been so good to grant me a renewed sense of peace about my daughter's baldness. I used to worry something was terribly wrong with her, and now I know it's not. She just doesn't have hair.
And I think she's beautiful. Period.
I don't care what anyone else thinks. She's lacking in NOTHING. Marc and I honestly don't know if a head full of hair would make her more beautiful than she is! And maybe our culture wouldn't agree, but right now, I really don't care. That's my Caroline, and she is simply gorgeous to me. We have every intention of "rocking the bald" as she continues to grow older.
As you can imagine, alopecia certainly draws attention in a crowd. And any of you that know my daughter, she's quite okay with that. :) The way she lights up a room when she walks in it makes me so proud to be her mom. I love watching her bask in her own self-confidence. (although I am desperately trying to instill some sense of humility in this girl!!) She knows without a doubt that she is a beautiful princess (with a hat OR without) and I hope that will always be so.
There is NO shame in this. There is no need to hide or cover up. Hats (and maybe wigs in the future) are for fun and for protection from the sun or the cold. NOT for acceptance. Sweet Caroline, you already have all the acceptance you need in your heavenly Father.
This may not make sense to any of you, but I can't help but notice when people look at us in public, somehow I think they are reminded of bigger things in life. Sure, they think Caroline has cancer or leukemia, and nothing could be farther from the truth, but I say let them think what they want. A couple of weeks ago, an employee at Lowe's stopped us to talk about his own fight with cancer. Obviously, it was a little awkward because we actually couldn't identify with the struggles he was sharing. But that didn't matter. Pain is pain. And we were able to listen and hopefully bring him encouragement.
I imagine as the years pass, I will come to an even deeper acceptance with alopecia, and I envision my daughter beginning to face more and more struggles with it the older she gets. I pray that is not the case in her situation, but hopefully God will continue to give us grace in this area as we love her fiercely throughout her life. Even now as I hear her explain her own hairloss, ("I have alopecia and it means that my hair all fell out!") I do pray that she will experience true acceptance with it. Right now she still thinks she's going to get more hair when she gets bigger, and I must admit, it's a little tough to answer that knowing that it is unlikely. (I usually say something to the effect of, "yeah, maybe you will someday! But sometimes people with alopecia don't get their hair back. But if they want hair, they can wear pretend hair!")
My daughter had a full head of lovely brown hair. (You probably wouldn't even recognize pictures of her with it anymore!) And when she began losing it at 21 months until she was slick bald, I thought something terrible was happening to my child. (And sure, this isn't the way things are supposed to be.) It was as if a terrible storm had overtaken us. As if life had capsized our boat and thrown us into the deep murky waters. I don't feel like I can even adequately begin to recount the heartbreak, the fear, and the despair that almost overtook me the past year and a half.
But God in His grace has been with me through it all. I absolutely LOVE the words of Isaiah 43, and as I walk beside others who are in the midst of deep pain in life, I find comfort here:
When you pass through the waters, I will be with you
And the waves will not overcome you
Do not fear, for I have redeemed you
I have called you by name
You are mine.
God has been so kind and gracious to give us alopecia. (those of you who walked through this with us, can you believe I'm saying that with sincerity now?!) Much blessing abides in it as we abide in Him. I know there will be many days ahead where I don't believe that, but oh, when I think about how He has grown me and what He has taught me through it, I am so humbled! I would've never asked for Him to work in this way, and I wouldn't ever have asked to suffer, but now as I am coming OUT of the worst of it, I see that He WAS, indeed, with me. He did not let the waves overcome me. We might have lost hair, but we gained so much more.
Who'd a thought that bald could be a blessing...