I (Amy) hate alopecia sometimes. Can I just say that?
Most days since our official diagnosis two months ago, I don't care about the fact that my daughter is bald and will probably always be so. I mean, it doesn't affect or alter the way we have to live and it doesn't change how Marc & I treat our daughter. So normally, it just is what it is and I go on about my day as a mom.
But the past few days haven't been that way. I feel the sting of pain again. I dodge the gaze of people's eyes in public. I find myself getting angry over the dumbest thing. I look at everyone else who is able to keep their kids' hair from falling out and wonder why I couldn't. I give in to self-pity and just seem to want to wallow there.
Most days aren't like this, though.
I don't really know why the flood of pain has returned. I guess it could be the change in season, which means we have to change out our winter hats to the spring/summer ones. Which means some of last year's hats don't fit as well. Which means we make a shopping trip out to buy some cute everyday hats. And while finding & buying cute hats is fun in and of itself, sometimes it makes me mad. Because honestly, if my kid had HAIR, I wouldn't be buying them.
And then there's the normal kid stuff. Last week my daughter took a bad fall and has a gash across her chin. Recently the crease in her eyelids have been really dry and it's caused them to get red, despite my efforts to keep them moisturized. Every little bump this gal gets on her head SHOWS! And I think we're at the age now where we seem to collect scratches and scrapes and bumps and bruises everyday from the normal life of a toddler. Today she woke up with some normal allergy-type gunk that would make any of us look a little under the weather. You know, where we get bags under our eyes and our complexion just doesn't look as great? Well, when my kid looks under the weather, it's alot different than when your kid looks under the weather. And combine that with the gash on the chin and the red on the eyelids and the bleeding scrape on her head, and.... (deep breath) it breaks my heart. I don't even know if this makes sense to anyone but moms of daughters with alopecia totalis.
I'm guessing the sadness/grief/anger over this will probably come in cycles, many times triggered by the smallest of things. (guessing that's "normal")
Most days are fine.
But it's days like these that I am keenly aware of the struggle against many idols in my heart. The over-desire to be attractive and for my daughter to be pretty. The over-desire to fit in. The over-desire to be loved and accepted. The over-desire to have a comfortable life, pain free. (now wouldn't that be great?) And just like it's the dumb little-cute-hats that remind me that things are not right here in this broken world, it's these over-desires that war within me that remind me I need a Savior.
Thankfully I've got one. But I've got so much more.
I've got a Father who understands what it's like to watch a child who is "different" than those around him. To a MUCH greater degree, He knows my sadness and anger. And He chose to adopt ME into his arms as a daughter even before the creation of the world! (Eph. 1-2)
I've got a Savior. A substitute. Jesus. Someone who took the stares, the rejection, and all the shame on my behalf. And then He gave me a righteousness that is in no-way, no-shape OF me. On most days, I enjoy walking in public with COMPLETE confidence knowing that I am a beloved daughter of the King. (The idea of living in the light of justification has taken on a whole new meaning for me as I hope to teach Caroline what that means as she grows. Pretty sure it'll end up being her teaching me...) And on the days I perhaps don't feel the confidence, (like today) it doesn't mean that my status has changed.
And I've got a Comforter. A guide. A Holy Spirit. Someone who softly whispers the Gospel into my heart daily. A Spirit that reminds me what has been done for me and helps apply it to my heart when I'm not quite feelin' it.
Most days I'm fine. No tears. I don't acutely FEEL my need of help, though it is always there.
But it's the days like these that push me to reflect upon all that the Lord has done and help me trust and depend on Him all the more.