Thursday, August 2, 2012

dear Alopecia...

Dear Alopecia,

(deep breath)  I have to vent.  It's just been one of those days with you.

Thanks to you, here was our morning TODAY:

-Of course we got the stares.  Nothing new.  We're used to that.  Alopecia, you always bring them our way.

-We had people being overly friendly and accommodating, as they believe we are in a desperate battle with cancer.  Granted, we ARE thankful you DON'T make us sick, Alopecia.  But you're no walk in the park to deal with, either.

-The older bald man in the checkout line at Walmart raised his cap and said, "Hey!  I look like you!"  But he doesn't know you.  And he's not a little girl with you.

-We yielded interruptions from complete strangers who want to know if we're in chemo treatments, like the lady who came over to our table at lunch.

Okay, okay.  I know that's just going to be a part of our life with YOU, dear Alopecia Totalis.

But I will say I am NOT yet used to the insensitive or hurtful comments directed at my daughter, even if they're out of ignorance of you.

At the children's museum this morning, a little girl took one look at my daughter and said to her, "Your hair looks weird."

I kinda caught the tail end of that sentence, so in my slight disbelief, I said, "Excuse me?"

She said it again.  "Her hair looks weird."

(The poor girl was just probably just trying to put into words that something was just not quite right, but OH!, the mama bear claws in me started to come out sooooo bad.)

I leaned down to her and calmly said, "That's because she doesn't have any.  She has alopecia, and that means that all of her hair fell out."

Is that what I'm supposed to say, Alopecia??  Isn't that your token line?  Now that I'm your begrudging representative for life and all.

To which the girl pranced off, as if nothing was wrong, but in her wake she left a mommy who wanted to scream and bawl simultaneously.

My gut instinct was to look for this girl's mom.  I've got to tell her mom.  Her mom would want to know.  That's me-- always looking for the teachable moment, and boy, was I going to make it a doozy.  But of course, there was no adult anywhere to be found around her.  (and alopecia, it was probably for the best, as I don't know if I would've handled that encounter with the graciousness I would've liked to have since I'm really fuming deep down at YOU.)

So I can only have it out with you, Alopecia.  And lately?  I really don't like you.

You entered my daughter's life and rocked my entire world.
I didn't realize how many pieces I'd have to pick up to go on.
You took all of her beautiful brown wavy hair.
And even all of her eyebrows and eyelashes for a time.
You've lost your claim on most of those now,
though this Mama still sees what's yours and what's still there.
You were relentless initially, and you tore me apart.
I have never been undone like that.
It's been an unimaginable process in accepting you into our life.
But (praise God!) we have.
We have decided to take you in as God's good gift to us.
Most days you're in the background, and you barely whisper a sound.
You go unnoticed.
And those are the best days.
Stay that way, okay?

But the other days, like yesterday, when my beautiful daughter asks you to go away?
Or like today, when something hurtful is said?
Or like everyday, when a stare lingers too long?
I am so done with you.

I'm so tired of you.
You wear us out sometimes.

It scares me how your presence will affect my sweet Caroline.
She doesn't like you right now, and I've done everything I can
to reconcile her to you.
It will be a lifelong relationship with you,
and I PRAY she will ultimately embrace you in her life.
I pray that you, alopecia, will help make her stronger.
I pray that you'll help make her more sensitive and kind.
I pray that you'll help inspire and encourage others through her.

Though you, alopecia, will be a part of her, you will NOT define her.

And it's my job to help her see that you are just part of the master Plan for her life.
That you are there to sharpen.
And to struggle against.
For His glory, and not any of our own.

But today, I say to you: Go away.



  1. All of this is just a part of His wonderful plan for all our lives. She is beautiful and will remain that way.

  2. Just so glad that her immune system didn't attack her lungs (like it has her Pop's lungs) or something else so vital. She's a joy.

  3. That's the Amy we know and love! Thanks for the reminder to pray for you all, that God will give you the grace and strength to face this challenge He has entrusted to you.

  4. I don't know why that just posted as Katie??? It was Patty, Katie's mom, not Katie. I'm using her laptop which is the only thing I can think of???? I just figured it out - it was linked to her Google account and I didn't notice it before it posted - sorry Katie!

  5. Thanks for the honesty. It is refreshing, always.

  6. Wow...what an excellent insight for us to consider! Thanks for sharing your heart and helping us to see a bit of your life--and the life of all families with a special member. Lord, give me grace and love for ALL your children. Help me to notice with love; speak in kindness; encourage with Your joy and peace.

  7. just a thought... but since alopecia is an auto-immune condition, like asthma or allergies (or autism according to many), maybe a holistic approach like the one in "Healing the New Childhood Epidemics" by Dr Kenneth Bock, might help? I highly recommend the book-- some great insights to health no matter what!
    -- a friend of The Hambys, former RUFer, gluten & soy free-er, mommy and sometimes-blogger Christina