zoe...

My heart is so heavy right now for a little girl I've never even met.  I'm praying day and night, glued to my email for any piece of news or update.

22-month-old Zoe is the daughter of another RUF campus minister, and when one of us hurts in the RUF family, all of us hurt together.

Zoe is fighting for her life in the ICU a few days after she accidentally bumped over a carafe of boiling water onto her arm, and then contracted a staff infection in the burn as well as some type of terrible virus on top of that.  Over the past few days, her little precious body has mysteriously shut down in order to fight to save her vital organs.  Today, however, things changed and the doctors are claiming Zoe is now "out of the woods."  Numbers are turning around and it looks like she will live!  (the name Zoe literally means LIFE!)

Praise God!  It's amazing how many people across the country have formed an army to storm the throne of God for Zoe!  He hears our prayers.

updates on Zoe will be on facebook under "#prayforZoeSmith"

However, Zoe's got a loooong way to go.  And it's now likely she will lose some of her fingers and toes which have turned black from the loss of blood to her extremities.

My mama heart aches and groans for this little girl and that possibility.  Obviously, if you had to pick between life-without-fingers-and-toes or death, you choose life-without-fingers-and-toes every time.

But still.

No one longs for suffering in their story.  No parent dreams for the Lord to afflict their child.

We've involved our kids in praying for Zoe over the past several days.  Every meal, every bedtime, every time we receive a new update, we are lifting up our requests before the Lord, begging and pleading with Him on Zoe's behalf.

And tonight over dinner, we discussed Zoe's possible future without fingers and toes to Caroline.

Caroline at 22 months

"Let me tell you a story," Marc began telling Caroline.  (I had no idea what he was about to say.) "Back when you were about 22 months old, the same age as Zoe, something happened and you got sick.  Your hair started falling out, you were having lots of stomach problems, and we didn't know what was going on.  We were very scared, and we didn't know if you were going to live.

"But it turned out that God said,
'your daughter is going to live.
She's going to be okay.
But there's just one thing... she's going to have to lose her hair.'

"And that's kinda like Zoe.  It looks like God is saying, 'Zoe's going to live.  She'll be okay.  But there's just one thing... she's going to have to live without something.  In her case, some fingers and toes."

"Yeah," Caroline's wheels were churning.  "But at least she's going to live!"

"When you first lost your hair, I used to pray and ask God to give you your hair back.  But then I realized God had plans for you without hair.  And maybe God has plans for Zoe's life without that part of her body."

Marc thought he was teaching Caroline in that moment.  But really, he was speaking to me.

Because with years of perspective, I can now accept the loss God brought into our life and see it as gracious.  And I PRAY that yeeeeeeears down the road, that will be the case for Zoe's mommy and daddy, too.

But right now there is simultaneous rejoicing and loss.  I'm sure they are feeling the gamut of emotions.  I grieved the loss of my daughter's hair.  I can't imagine what it would've been like to grieve the loss of fingers and toes.

Maybe that's partly why Zoe and her parents are so heavy upon my heart.

My friends, please join me in praying for this precious little girl.  Pray for the doctors who are taking such good care of her around the clock.  Pray for her platelet counts to increase and ask God for a miracle to keep her digits.

But if God wills that this girl lose some of her extremities, let us pray that such a great loss might later reap bountiful blessings as God uses her "zoe," her life, to bring Himself glory.

"The Lord gives and the Lord takes away.  Blessed be the name of the Lord."  Job 1:21

i am bald, i am black...

I am bald.  I have alopecia.

I am black.  I have cocoa brown skin. 

When people see me, they often see "bald" first and ME second.

They immediately make false assumptions over which I have no control.

I am bald, and that's a big part of me.  

But that's not ME.

When people see me, they often see "black" first and ME second.

They immediately make false assumptions over which I have no control.

I am black, and that's a big part of me.

But that's not ME.

I want you to talk to me like I'm the same as you.

Just because I'm bald doesn't mean what you think it does.

Don't ignore my difference, but affirm it as beautiful.

Bald IS beautiful.

It's made me who I am.  

But it's not who I am.

I want you to talk to me like I'm the same as you.

Just because I'm black doesn't mean what you think it does.

Don't ignore my difference, but affirm it as beautiful.

Black IS beautiful.

It's made me who I am.

But it's not who I am.

I am bald.  I am black.

I am different, but I am the same.

bald, bold, beautiful...

Bald.
Bold.
Beautiful.

3 words that most certainly describe my sweet Caroline.

When a little girl is bald, I suppose people expect her to be shy and withdrawn.

Or sick and ashamed.

I can tell from their reactions they don't expect the active, energetic, well-spoken gal that she is, and often times it's like strangers have no idea what to think of us!

Caroline would, of course, prefer to have hair.  (What girl wouldn't?)  She tries not to let the long, confusing stares from little kids hurt her feelings, but that's what bothers her the most.

What bothers me is when I see mothers shushing their children and whispering into their little ears to attempt their best explanation as to why my daughter has no hair.

Because I'm 100% sure that explanation is WRONG everytime.

My daughter is not sick.  She doesn't have cancer.  She's not in treatment.   We're doing just fine, thank you very much.

I wonder if any mom would simply answer their child's questions similar to how I would if I was in that situation?  "Yeah, I see that girl!  She doesn't have any hair, and I'm not exactly sure why- sometimes it means someone is sick, but not always- but God made all of us different and special, and isn't she beautiful?  She looks very nice.  Shall we go up to her and tell her 'hello'?"

Moms, let's teach our children to see differences as NORMAL.  They take their cues from us.  Let's teach our children that everybody's got something that makes them different, whether it's something we can immediately see with our eyes or not.  Let's model to our children what it looks like to lovingly approach others who are different with respect and a willingness to listen to their stories.  

It also bothers Caroline when people think she's a boy.  She is almost always wearing skirts and dresses, pink and purple, and yet people still think she's a boy.  Thankfully she understands that most people don't even know what alopecia IS, and that unfortunately she's going to have to do alot of explaining throughout her life.  (I'm sure that gets really old.)  Maybe one day, with enough awareness out there, there will be a category in people's minds for alopecia.

But even amidst all the challenges of alopecia, Caroline's very comfortable in her skin and likes some of the advantages a bald head brings...

(these are the good things about alopecia according to her)

1) no lice  (ha ha ha!)
2) your head doesn't get so hot under all that hair
3) hair never gets in your face
4) you never have a bad hair day (ha!)
5) you don't have to shampoo or style it, you can just wake up and go!

My daughter is bold and confident, and I pray that doesn't ever change.  God has gifted her with a beautiful inner strength, impeccable verbal skills, and not to mention gorgeous outer beauty that will serve her well with this condition.

She knows alopecia is a part of her, but it's not HER.

Who needs hair to be beautiful?  She rocks the bald.

And I couldn't be more proud.

new wig...

She'd started asking for a new wig recently.

She wanted long.

She wanted curls. (twists, to be exact)

And she wanted blonde.

Well, we got two out of the three!

(We had no luck with going blonde... it washed out her complexion.)

So brunette she will stay... for now, anyway!

 I love how a wig to Caroline is like a fun accessory.  Something to throw on and wear here and there, as opposed to something she won't leave the house without, you know?  We don't want Caroline to feel any shame or need to cover up.  She's gorgeous with or without hair.   She rocks the bald!

She hardly even wears a wig.  I'd guess she wears one maybe once or twice a month to school, and that's usually to sport a hairstyle she's wanted to try out.  "Mom, can I wear a ponytail to school today?"

For that reason, we aren't spending much on wigs.  To get a great custom-made wig with real human hair would cost in the thousands.  I'm not opposed to that in our future if she decides she's ready to go that route.  This one was a blend of human hair and synthetic, and it cost us a whopping $40.  It's certainly not the world's greatest.  We'll have to make a few adjustments to the inside for a more snug fit (it's made for adults) and added comfort, but this wig should hopefully get us through another year or so.

 

the back

You know, I never dreamed my daughter would go bald.  I had never even heard of alopecia in my life before she began losing her hair!, and it's apparent (especially when wig shopping, of all things...) that most other people haven't either.
Caroline's getting really good about just smiling when adults wish her well health-wise because they assume she is sick with cancer and feel the need to show pity to her.

A few weeks ago, just before she fell asleep she said, "Mom, no one at school asks me why I don't have hair anymore."

I paused to see what she'd say next.

"Well, except the little preschoolers.  Sometimes they ask because they have no idea about anything." (ha ha!)

What a crazy life we live dealing with no hair, wig hair, and black hair, I tell ya!

I am just faking my way through it all and doing the best I can.

Thankfully, baldness doesn't much matter in our day-to-day living.  It doesn't keep me from loving her to pieces.  While it certainly affects my daughter's identity, it doesn't solely define it.

She's just Caroline.  My strong, social,  encouraging, routine-loving little leader.  The girl I love the most in this whole wide world.

And she just so happens to have no hair.

i would drive 500 miles...

You know, driving cross country from Texas to Virginia with young children isn't my favorite thing in the world to do.  

But we had the time, and it provided us the ability to stop and see people who are extremely meaningful to us along the way!  

Like Molly.

Molly, an alopecia buddy, has actually been in our life for several years though this was only our second time meeting her in person! (Here was our first meeting & more about Molly.) Seeing Molly again was a huge motivator to drive through Memphis, and our visit with her definitely made all the long hours worth it.  So glad this lady is in our life.  Caroline absolutely ADORES her!  (so do we!)

And we got to make a quick stop in Nashville for lunch with Alyssa!  Alyssa was a student in our RUF ministry at Texas Tech (before we began the RUF here in Lynchburg) and she is super special to our family.  I love relationships where distance doesn't mean a thing because when you see one another, you pick right up and keep going where you left off.  What's so cool to me is that she's actually living with HER RUF intern (Della) & their family.  It's beautiful how these relationships in a transitional time like college ministry still last lifetimes.

We were also thrilled to stay the night with our friends, the Browns, in Knoxville that night.  (I regret I didn't get a picture- oh well!)  It had been years since seeing them, and it was great catching up.  I'll never forget the visit there, especially because at 3am in their basement, that's where my vertigo attack began in full force, so Marc helped my nauseated self hobble to the bathroom without losing my balance.  (boo.)

Anyways, a day or two after settling back in at home, we FINALLY had a little Christmas of our own!

Caroline and Jameson both loved the marble run.  Caroline likes building and designing the runs, and Jameson loves to drop the marbles in and watch them go.

 And any sports lover would go crazy at a basketball goal, right?

Right.

You probably see that bed set up in the living room?  

That's because Caroline got a new bed (a full size mattress for free from our neighbors- thank you!) and beautiful bedding to go on it!  

So then Jameson got Caroline's old twin-sized bed instead of his little toddler bed, and we're hoping that it will inspire him to stay IN the bed throughout the night... so far, it was a nice thought...

 Caroline Abbott, Caroline's new doll, wanted to show you SHE also got a new set of bunk beds as well.

PLUS there's a closet on the end of them to hold all of Caroline Abbott's outfits and accessories.

BOTH Carolines were super excited.

Minus the vertigo, it was a great trip and a great Christmas.  Our cups are full from the quick visits we were able to have on the long trek back to Virginia.  

everybody's got somethin'...

(Quick update from the last post: our "superman," Jameson, is feeling SO much better today now that the antibiotics are in full swing!)

happy girl

We finally got the cast!  And it's pink (of course)!

Since it'll only be two weeks before the pins come out, the doctor gave us the option of wrapping her arm back up with a splint and ace bandages.

Watching Caroline's face as the doctor presented that option, I could tell there was NO WAY we were leaving that office without a pink cast.  NO WAY.

the love of Jameson's life

 There was also NO WAY Jameson was going to leave that doctor's office without his own nurse buddy, too!   (ha ha!)

 He clung SO tightly to her leg when it was time to go- must have been love at first sight.  This sweet nurse literally CARRIED HIM OUT TO OUR CAR and buckled him in before he fell into a thousand pieces when she said goodbye.

sweet friends

 Caroline's loving her pink cast!  And she's handling the challenge of living one-handed like a champ.  I'm so incredibly proud of her.  (I'd be whining up a STORM.)

Seriously, not one complaint.

I can't help but wonder if it's because her sweet friend at school lives without a hand, but still amazes everyone with all that she's able to do!

enjoying the hay ride on the class field trip

 In fact, coming home from the ER the night of the accident, Caroline insightfully said, "Now I'm going to be more like M!"

I couldn't be more grateful for my daughter to have a friend like M.  They came into kindergarten together, and they've been a beautiful encouragement to one another.

We talk alot in our family about how "everybody's got something."
God makes everybody with unique gifts and challenges.

Sometimes it's easy to see how we're different, like having alopecia or missing a hand, and sometimes people have things that aren't so easily visible, but one thing is for sure: EVERYBODY'S GOT SOMETHIN'.

 Speaking of handling our differences, 

the week after her accident, 

Caroline asked me to write out her thoughts on alopecia into a booklet.  Oh man, you can't imagine how happy it made this mama's heart to hear:  

"I like alopecia!  

But sometimes I wish I had hair.

Sometimes I have to itch my head.

"At school everybody still likes me, even with alopecia.

Sometimes I wear a wig to school or out places.  I have a brown wig.  I'm getting a blonde wig for Halloween to be with my Elsa dress.  Elsa is a character in Frozen.

Sometimes I feel fun with alopecia.  Mommy likes to feel my smooth head.  My family thinks I'm special.  Sometimes for dress up I wear my wig.  

I feel very happy with alopecia.  It doesn't matter if I have alopecia because I'm still special. 

 "Song:

I feel very special.

I turn my back on Satan.

My heart unfolds when I see God.

I will try to obey the Ten Commandments.

I feel wonderful.

I know I'm special.

God thinks I'm special, too."

(gotta love their train of thought!)

 Alopecia still has it's days.  It still has it's ups and downs.  At times it feels like an extra person we carry into public with us.

It's a battle we're called to normalize.  

But after my own year-long struggle to accept alopecia when Caroline was first diagnosed, I can't tell you how relieving and amazing it feels to see my daughter finding confidence, approval, and strength in her own uniqueness.

Both of my kids will face challenges in being different.  Jameson will face the unique issues of being a transracial adoptee with white parents.

We're learning to be okay with our differences 

and embrace them as who we are.

We're learning that life's not all about 

looking like we have it together,

and God uses our differences to strengthen us.

It's these differences that also help us relate to others, too.  

Because, after all,

everybody's got somethin'.

alopecia at 6...

Living with alopecia becomes slightly more complex each year as Caroline grows.  Since she's been bald since age 2, this girl doesn't even remember a day with hair!

But now, at age 6, she's old enough to recognize and understand her differences.  She knows she'll be the only one like her wherever we go.  She wishes there were more little girls like her, and I know she'd LOVE to have long, flowing hair to style and braid like all her friends do.

But Caroline seems to have a good hold on her alopecia right now... accepting it, confident with it, yet not making it her sole identity.

When she draws a self-portrait at school, it's always bald with a big flower headband.  :)

When it comes to other's reactions, though?   That's when I can tell alopecia is on her mind.

I know it's on her mind when she'll ask to wear a wig if we're going to a place where she perceives kids will be.

"Little kids just stare at me, mom," she tells me.  "Grown ups are nice, but it's the little kids I don't like staring at me."

(which is an interesting perspective, eh?)

So then she'll wear the wig out, and still, the little kids will stare.  She's confused.  "See, sweetheart?  They're not staring at you because you're bald!  That's just honestly what little kids DO."

She wears a wig to school for fun every now and then, like an accessory.  But the minute she hops in the car at 3:00, that wig quickly flies off with great relief!  Too hot and too itchy!

I'll also know it's on her mind when I pick out clothes for her to wear.  "Mom, people will think I'm a boy if I wear that," she's told me once or twice recently.

If you were to ask Caroline if she likes having alopecia, she'd probably answer "no" in a casual fashion and move on to the next conversation.  She may not like it, but it doesn't seem to consume her, and I think she knows she's wonderfully and fearfully made by God.  She knows her own struggles and issues are deeper than just hair!

And as Caroline watches her brother cry as he gets his hair washed, detangled, brushed, and styled, I think she sometimes feels more fortunate than jealous!


She's also in a small private school environment that couldn't be MORE supportive of her.  She's just Caroline there.  Not "the bald girl."  Everyone at the school knows her.  (and it's her personal mission to know everyone there, ha ha!)  In God's goodness, the art teacher at her school is wonderful!, and also has alopecia (and wears no wig).  I couldn't be more grateful for Caroline to have a teacher in her life that looks like her and understands life with alopecia.

(The cost of tuition at this school is seriously outrageous, but somehow we will continue to scrap up the money to send her there because I know for so many reasons, it's where she needs to be.)

There was a situation over the summer where an older girl reacted to seeing Caroline at the children's museum by jumping back frightened.  I forget exactly what was said, but a few days later Caroline told me about it, and we processed through the situation together.  For several days following, I found Caroline writing and drawing what had happened.  Nothing breaks this mama's heart like watching my daughter have to deal through instances like these.  I pray God will continue to give us grace for the future.

Caroline knows cognitively that people mistake her for having cancer, but she doesn't yet know what that really means or why people react in the way they do at times.

She doesn't realize why complete strangers walk up to her and tell her how beautiful she is.  She doesn't realize why people will lavish gifts upon her, or why they anonymously pay for our meals at a restaurant, or why they allow her to do things that they would not allow for other kids.  She thinks all this is normal.  She doesn't realize there are actually special privileges from being bald.

On the other hand, she also doesn't realize what an inspiring little girl she is to the world, either.

That her smile, joy, and confidence send counter-cultural messages about beauty to a skin-deep world.  (recently a unidentified picture of her went viral on facebook and received over 171,000 likes...someone happened to see it and tell me about it)

She doesn't realize that simply because of alopecia, her words will be heard, that her life will be noticed and watched.

I hope she'll soon realize that the Lord has given her a special story.  He's provided her with unique insights and opportunities to bring Him all the glory He deserves.

And I pray that she'll grab ahold of His goodness and run.

before she lost her hair...

It was about this age, when Caroline was Jameson's current age (21 months), that Marc and I began discovering hair mysteriously appearing in Caroline's crib, on her pacifier, and in the bath tub.   I guess that's got me thinking back to how it all happened and reflecting upon how much things have changed.

At the time, we didn't know what to think.

We didn't know what it meant.

We certainly never envisioned that ten months later, our daughter would be completely bald and face the likelihood of a lifetime without hair.


We had never even heard the word "alopecia."

"Oh, you don't want that," my sister explained to me over the phone the night our suspicions were raised.  Moments before, she had called a nurse practitioner friend to help us unlock this new hairloss mystery.  "I'm sure it's not alopecia, Amy, but you need to go and get her checked out right away."

Of course, we know the rest of the story.

It's surreal to look at these final pictures I took of Caroline the month before alopecia entered our world.

It's like another LIFETIME ago.

It's amazing how much can change in just a few short years.

And it's amazing how much we can change in a few short years.

 Not only is Caroline a completely different person from it, but I most certainly am, too.

Before alopecia, I foolishly didn't know how much value I was placing upon outward beauty.  

I didn't realize my deep-seeded desires to be like everyone else.  

To be accepted, admired, and liked.

Before alopecia, I was unknowingly a slave to my own perfectionism, striving to keep up appearances.

 And then,

with something as simple and bizarre as losing HAIR,

it was all taken away from me.


Suddenly, I had to die to the idol of looking like we had it "together."  Because we didn't.

I, the new adoptive mama, couldn't keep HAIR on my child's HEAD.

(How's that for feeling like a failure?  There's a good ol' strike to the perfectionism.)

I had to die to the dream that there'd be no pony tails, no ribbons or bows in her future.  No one would "ooo" and "aaaw" over my child's hair like they did for all the other cute little girls her age.

That may seem so superficial from the outside, but until you've watched your own daughter transform into what looks like a cancer patient before your very eyes, you may never know what an idol your daughter's femininity is to you until it's taken away.

You might think Caroline and I 

looked "better" before alopecia came into our lives,

but nothing could be farther from the truth.

Because of alopecia, we now see things so differently.  

We see people differently.  

We see beauty in a different, deeper sense.

And we know there are far more important things in life than having hair. 

I wouldn't wish for alopecia, but in many ways, 

I'm thankful for it.

God was gracious to give it to us.

It may have taken away her hair,

but looking back, it has given both of us so, so much more.

to speak or not to speak...

So here's the scene.

I'm at our local children's museum with my two kids.  We're in this exhibit where my kids are stacking magnetic pieces to one another to form cool and interesting structures.  Only 3 feet away from us is a computer and desk area that teaches kids about architecture-y stuff, and there's a family with their backs turned toward us at that computer.

One of the boys turns around.  I'd guess he's 5 or 6.  He spots Caroline, who thankfully has her head down engrossed in building.  I watch this kid's arm point straight out at her, his jaw drop, and his other hand cover his mouth.  He's obviously in disbelief at what he's seeing.  It's rude to do, especially from 2 feet away, but okay, I get it.  Mama Bear is alert.

Then little boy hastily turns to his brother, still at the computer, and frantically begins poking him on the back as if to say Hurry!  Check out this freak show!  Caroline still doesn't look up, thank God.  Now both boys turn around, and boy #1 AGAIN stretches his arm out pointing.  They are obviously more fascinated and grossed out by my bald daughter than by any exhibit in the entire museum.  And of course, their mother turns around just in the nick of time to see... nothing.  Oblivious to the entire thing.

I'm watching it, as if in slow motion.  Mama Bear suddenly feels the need to attack.  Normally I let reactions slide.  Normally I don't confront.  I know what it's like as a parent to have your kid react poorly to someone out of curiosity, and I know kids have issues.

But this one had obviously crossed the give-the-kid-the-benefit-of-the-doubt line.  This kid did not have any perceivable issues to justify his reaction.  My death stare wasn't working, either.

I've got to say something to his mom.  But what??  "Um, excuse me, but your kid is being a JERK!?" which is all that honestly was coming to my mind in the heat of the moment.  I could feel my intensity level rising as I wrestled with what to do or say.  All I could do was keep staring that kid down.  Can you say STINK. EYE.

And in a flash, they were gone.  Off to the next exhibit, as if nothing had happened.  Caroline looked up at me.  "Mom, look at the house I just built!"

And there I was.  Burned up in a pile of anger.

But really it's sorrow.  At times I hate this for my daughter.

As a mom of an alopecia kid, discerning how to handle moments like those is hard!   Though it's what I feel like doing, lashing out in anger or snapping at some random kid or mother isn't an option.  (Well, I guess it is.... but not a good or mature one, I should say.)  After all, anger and rudeness don't change hearts.  Only love does that.

It's hard to take the "high road" and absorb the injustice of the moment, too!  To keep my mouth shut as I usually do.  Yet I have a Savior who absorbed a whole lot more injustice upon himself than that for my behalf.  And if he could keep his mouth shut during that, I should certainly be able to hold my tongue at some kid's rudeness, too.

On the other end, it's also hard to lovingly call out random strangers and attempt the "teachable moment" approach.  That takes guts.  And nerves of steel.  Yet Jesus wasn't afraid to call out those who needed calling out.  There is most certainly a time for speaking the truth, but of course, always in love.  Perhaps it would have been loving of me in that moment to speak to that kid's mom.  Maybe caring for that kid in the moment would have been showing him the dignity due to all of humanity.

I guess there's more than one "right" way I could've handled it.  The more I think about the situation yesterday, the more I wish I had spoken up this time, both to my daughter's defense (though she didn't even know she needed defending) and for the edification of that kid and family.  Caroline needs to occasionally see me model loving confrontation- she herself will likely need that as a life-long skill.

I wish I would've walked up to the mother, wanting the best for her son and his maturity, and politely said, "Excuse me, but I think you might need to have a talk with your son and how he reacts to children who look different from him."

Tough.  Would've been embarrassing, right?  For both of us moms, no doubt.  I'm cringing right now at the thought.  Even if I had said it with all the love in the world, who knows how it would have been received?!

But I have to remember it's through tough, embarrassing moments that we all grow.  Those moments, as awkward as they are and as much as we want to run from them, provide us with insights and family conversations that would otherwise be missed.  It's through those helpful moments, not in spite of, that we (and our kids) move forward in maturity and compassion for others, instead of remaining in the places we are now.

And the growth isn't just for them.  It's completely challenging and sanctifying for me to learn how to take my anger in these moments and channel it instead into love.  To find words of strength that are also bathed in graciousness.  I know this won't be the last time.  For both of my kids.

God, would you continue to grant me the grace to know when to speak and when not to speak. 
Would you give my children the strength to bear all that will come their way.  
Would you give all of us a deeper love and compassion for those who are not like us.
Help us to see Your image reflected brightly in each person You've created
and help that to make a difference in our words and our lives this day.
Amen.

a future with hair?...

You may have heard the big news in the alopecia world this week.

A hairless 25 year old male was treated with a medication used for rheumatoid arthritis, and he experienced complete hair regrowth within a period of months!

Here's the article published by Yale.  
Here's the actual published article by the doctor.
Here's an interview with the doctor and the patient.

Encouraging stuff, right?

Yes.  Most definitely.

As this story is making its rounds through the media, it's also providing hope to those of us in the alopecia world who live with the psychological and social effects that come with it.  It's exciting to think about the future of alopecia treatments.  Since a scientist discovered the gene for alopecia just a couple of years ago, (which was a HUGE step!) lots of research, clinical trials, and progress have come in its wake.  It's also neat to think that Caroline's blood sample we sent in three years ago to the national alopecia registry can be helpful in continuing research towards a cure.

Good stuff!

But as crazy as this may sound, along with this encouraging study (which was only performed on one individual, let's remember, though there will be clinical trials beginning soon) comes a bag of mixed emotions for me personally.

It's not that I don't want there to be a cure.  Certainly I do.

But this drug isn't a cure.  It's a treatment.  A hopeful treatment!, but another treatment nonetheless, to potentially add to the accepted list of immunosuppressant steroid creams, injections, and pills that alopecia patients already have the option to endure.

I'm so thankful for the extremely strong and active foundation in the alopecia world, NAAF, and while they are encouraged by the study, here's their reaction:

While we remain hopeful, we wish to remind the alopecia areata community this is a preliminary study with the effects of the drug studied on only one individual.  It should be considered preliminary and not validated at this point, and remains to be further studied in clinical trials.  We encourage the researchers at Yale to pursue a clinical trial and are excited that a clinical trial with this drug will be starting at Columbia University this summer.

Doctors don't know alot about alopecia, and there's no predictability in the condition.  Hair can regrow and fall out whenever the immune system decides.  One pattern that doctors have learned is that the earlier you lose your hair, and the more extensive your hairloss, the less likely you are to experience any regrowth.  That may be particularly important to find in this study, because the patient lost his hair at age 20 (only 5 years ago), which made him more likely than someone like Caroline, for instance, to experience regrowth.

So I guess you could say I'm cautiously optimistic about the future.  I'm so curious to see what they'll find and what will happen in the years to come.

Meanwhile, can I just say I'm in the everyday trenches with alopecia?!  

I'm dealing with the deep insecurities it is digging within my daughter's heart.  

I'm staying up late by her bedside the night before day camp to practice what she's to say to someone who stares at her or asks about her baldness.  

In public, I'm Mama Bear, constantly scanning the scene around us, aware of the stares and reactions, and either I'm intentionally smiling back at you as your jaw drops when you see my kid, or if need be, I'm giving the stink-eye right back 'atcha.  I try to appear cool and collected when my Caroline is with me, but you better believe Mama Bear is always on high alert.  

Being a mother is a full time job.  I feel like alopecia adds an extra part-time job into the mix.

It's hard.  When I think about there being a pill or cream that could just instantly take all of that away, it would seem like a no brainer.  Right?

But in other ways, alopecia (and the journey to accept it) has been so richly rewarding.  Though others may see Caroline's baldness as a flaw and weakness, I can't believe I've come to see it now as a strength.  The world would see it as taking away from her beauty.  I see how it adds to it!  I'd have never asked for it, but Caroline wouldn't be who she is today without alopecia.  It's a part of HER now.  (You don't even know how crazy it is for me to say that.)  

I have grieved and mourned the loss of the daughter with hair.  I used to ask God to bring that girl back.  To bring her hair back.  Now that doesn't even cross my mind.  (We have lots more things to pray about than some silly hair regrowth! haha!)  

I was and still am prepared for a life with baldness.  So the thought of having hair again is...jolting, I guess.  It raises more questions for me and for us in the future, but thankfully Caroline is young and we don't have to make those difficult treatment decisions until she would be old enough and ready.

Within the alopecia world, there are different ways of handling the auto-immune condition. Some pursue treatments and some don't.  Some wear a wig and some don't.  Some fight it and some accept it.  Some hate it and some wouldn't want their hair back even if they could.  

God has brought me from such a far Point A (fighting and hating alopecia) all the way to the distant Point B (accepting and even embracing alopecia), and I know that regardless of what our future holds, (hair or no hair) He will be with us every step of the way.

"He preserves me so well that without the will of my heavenly Father, 

not a hair can fall from my head; 

indeed, all things must work together for my salvation."  

~Heidelberg Catechism, Question 1

a look back, part 3...

...continued from Part 1 and Part 2, excerpts from my personal journal through Caroline's hairloss journey.

11/3/11  (Caroline was showing a variety of mysterious symptoms, not just hairloss)

I just need to be alone with my thoughts.
I don't even know what they are.
Our doctor "sent us on" today
after seeing Caroline's loss of pigmentation
on her legs spreading.
She wants us to see an immunologist.
It was a blow to hear,
"I've been in pediatrics for 30 years
and I've never seen anything like this."
I'm thankful for her honesty,
but it is utterly discouraging.
I feel so paralyzed.  Numb.  Confused and alone.
I feel like no one has time to just SIT with me.
Like no one feels the weight or shares it with me.
Like people are curious or interested,
but not affected.  
It's not their child, afterall.
I feel like no one's entering the suffering-
but just looking in on mine.
I don't know what I even want-
just someone to help me process it, maybe?

I feel like I'm a terrible mom.
Like somehow I didn't do enough.
Or at least I should be able to figure this out.
I don't know what "normal" is anymore.
I don't know how to be a mom.
I don't know what I'm doing.
I am so weary.  So hopeless.
God, please guide us to answers.
Help me to know what I should do.
*****************

11/12/11

Today marks one year
since the first hairs began falling out
of my daughter's head.
I remember finding her pacifier in her crib,
entirely COVERED in her own hair.
I remember her finding them in between her fingers.
I had no idea what was happening or why.
I remember that I wasn't even all that worried
I certainly didn't expect my child would be bald
in 10 months time,
or that a year later I still wouldn't really know why
or that I'd be providing a gluten-free, dairy-free, soy-free,
low sugar diet for her.

My how things change in a year.

Before all of this,
I used to think health issues
were so concrete, so fixable.
I trusted physicians to KNOW and help.
I thought I could eat well, and feed my kid well,
and deal with the normal stuff that comes along.
I never knew what a year
of discouragement and heartache
this would be.
I didn't know what it was like
to cry so hard
you thought you might puke.

It's been a year of grieving the little things:
no more ponytails or bows or shampoos.
It sounds so dumb
and it could be so much worse
but it is still so, so painful.

It's been the hardest year of my life.
It's also been the best year of my life, too.
Watching my little girl grow and blossom
is the highlight of my life.
I have a husband who is so, so good to me
and we are the best of friends.
I love my little family.
We are richly blessed,
with so much more than hair.
God is growing me in ways I never dreamed.
*********************

1/1/12 (New Year's Day, another year later after we finally received a diagnosis from Duke Children's Hospital.  Caroline's symptoms were a result of alopecia, which required no treatment, and an intestinal parasite, which was very simple to treat.  All of the nutritional efforts in the world wouldn't have resolved the parasite... who knew?...)

2011 is behind us.
A year of a diagnosis!
It's just alopecia.

2011 was a year of re-building.
Rebuilding who we are,
what we believe,
figuring out how life works
when your kid is bald.
2011 wasn't void of tragedy-
my dad's diagnosis of pulmonary fibrosis
and my mom's fight with cancer.

Looking ahead to 2012,
I'm praying for an adoption.
***********************

And would you believe.
That's just what He gave us
November 8, 2012
in the form of
sweet Jameson David.

Praise be to God,
for He has done great things!

a look back, part 2...

...continued from part 1, excerpts from my personal journal as Caroline's hair was falling out.

3/11/10  (upon beginning Caroline on a gluten free diet in hopes that her hair would return)

Will this even help?
I am doubtful before I begin,
but I'll try nonetheless.
Will she ever be dark and full
with curls and bows again?
It breaks my heart to look at pictures
My girl is not the same
Though I love her more now.
Struggling more with MY own demons
Keep trying.
Keep failing.
When will it get easier?
When will it be a memory?
What will get me through now?
I don't think this is celiac,
but everyone else does.
Can't see how food will bring her back
to who she once was.
I doubt it.
But at least I'm doing
which is so much better than sitting.
Wish I could just relax and trust.
It's all up to me.  Or so I think.
So it goes in my head.
God, I am dependent.
Give us this day our daily bread,
but please don't let it have gluten in it.
*******************************

Went to Chic-Fil-A today.  So hard emotionally to see all the "Target" moms, where everything is so easy: pop open milk, go get the hot food for their kids (who are, of course, kids with full heads of flowing hair), while mine eats a cold hot dog and potato letter fries that I made before leaving the house.  It is so hard not to compare and feel sorry for myself.
********************************

10/31/10 (after months of nutritional therapy of no gluten, no dairy, no soy, etc.)

I am so confused.
I don't know what to do
or know who to trust anymore.
On one side, I've got mainstream people
saying to take her for more testing and treatment.
On the other, I've got people at church giving me
homemade kefir and special supplements.
I understand the idea, but look,
my kid has no HAIR, okay?
I don't have time to wait around
for these alternative probiotics to start working.
It hurts to hear that I need to do MORE-
I have been doing everything I possibly can!
Why do I have to be a mom and a chef
and a nutritionist and a doctor?

I go through such drastic peaks of faith
as well as anxiety and unbelief.
Some days I see the Gospel clearly
and feel God's hand guiding us.
Other days, even hours later,
I feel God is so distant and uninvolved,
and it's up to me to know which treatment to pursue.
I realize I make Caroline's health and idol,
but I don't know what else to do.
I want her to be healthy.
(What mom doesn't want that for her child?!??)
But am I wanting too much?
God, do You want something else?
Obviously You do.
But I don't like that.

I don't want to have the job of mending
Caroline's broken heart in the day
she realizes she doesn't have hair.
I don't want that day to come.
I don't want her to know the sting
of hurtful words or laughs,
especially over something she cannot control.
I don't want her to be the "only" one, the "different" one.
I don't know how God could spare 
the LIFE of His own son
when I want to do everything I can 
just to keep her from getting teased.
*****************************

Really?
A pink hat, pink pants,
and a t-shirt with a sparkling heart on it,
and you're gonna call her "little fellow"?
It is literally almost EVERYTIME we go out!
If I hear one more person mistake her for a boy,
I might scream.
For that reason, we don't wear blues and greens
We wear PINK.  Almost constantly.
God, I guess I just want Your will to be mine.
I want You to serve my purposes, 
and not the other way around.
I say I want my daughter healthy
and to have hair,
but sometimes it is more about
wanting a life of ease, free of pain.
Help me to grasp the depths of Your plans for us:
for Caroline, and for me.
I don't know what You have for her.
I am plagued with wondering,
will she ever have hair?
What will she look like in kindergarten?
5th grade?  As a teenager?
As a bride?
What will her life look like?
How long will all of "this" last
and does it ever end?

to be continued...

a look back, part 1...

As I was rummaging through a drawer, I happened upon an old journal from 2010, the year Caroline's hair mysteriously began falling out slowly over the course of 10 months until she was completely bald as we know her now.

Though I blogged very publicly during that time, I just came across these personal entries I wrote in the rawness of my heartbreak, and thought I might look back and share some of them with you, especially in light of how far along He has graciously brought me over the past four years.

To God be the glory.  He has truly done great things.

***********************
2/2010
Feeling like I want to explode
or crawl up into a dark, dark cave
Where did my beautiful girl go
And when will this END?
God, what are you DOING
Breaking me of idols
But why break her?
I don't want your plan
My way is better
I want hair over holiness
Beauty above suffering
No one will sit and feel like I do
Wanting more answers
Not knowing where to turn
I can't take it
The pain is too great
Crying doesn't make it go away
Nothing can.
Pass over her.  Afflict me.


2/20/10
Don't know how to cope sometimes.
Don't know what that looks like.
I function.  Somehow.
The inside is torn and beaten down
while the outside smiles and performs.
Dreading even my own own fellowship
Where people will look and stare
"Don't talk to me about it," I think.
"Yet don't ignore it, either."
Which is it?
Don't even know what helps.
When will this end?
Oh God, please stop this.
She is too beautiful.
She is too special.
Please keep her from pain.
Please help us to take a day at a time.
I want to put her hair in bows,
in ponytails and braids.
Give me grace and peace within
Peace to accept
To know when to stop fighting
To know how to handle the stares and the questions with grace
To teach my daughter that she is beautiful
I do not want this lot.
Please heal, restore, grow, replenish.
Lead us through this.
Give us the strength to walk by faith
Because the sight is so, so sad.
Worsens every day.
A visible sign, hidden from no one.
One look and you know.
There is no covering up.
Vulnerable.
Helpless.
So thankful she is alive, active, and smart,
thoughtful, healthy and strong
Caring and perceiving, growing in every way except one.
While she may look sick to you,
she is still beauty to me.
But even a hat cannot cover my broken heart.

2/24/10
Slowly acceptance creeps in
But not a submissive one
No longer placing hope in regrowth
Accepting a future of pain
More like "acknowledging," rather.
I don't like it.
I don't like
that I am forgetting her with hair
and that this is now my normal.

3-2-10  (with the possible diagnosis of celiac...)

Celiac?  Is it?
Excitement and dread
Wanting an answer, a cure
Yet dreading the sacrifice ahead
A long road, but perhaps with hair??
So happy and hopeful
Impatiently waiting.

to be continued...

death and life...

I was clearing out pictures off an old camera yesterday when I found this one:

A random photo of Caroline at age 1, before alopecia, when she still had hair.

The picture itself wasn't anything spectacular, but I was surprised by the blast of emotions that imploded within me soon after it popped up on my computer screen.

I haven't seen that girl in so, so long.  My tears quickly turned to sobbing.  Marc rushed over to hold me.  He, too, was surprised that a single picture could trigger such a burst of intense emotion.

"There's... been a... death since then," I muttered between sobs.  I couldn't quite put it into words.

I don't know what it's like to lose a child.  I can't imagine.  I have yet to face death squarely in the eyes of someone very close to me.  But when my eyes laid themselves upon this image, in a weird sense, the grief felt suddenly more than I could bear.

It's been years now since Caroline lost all of her hair.  I am such a different person now and at such a different place with her baldness.  Rarely do I look back.  Rarely does anyone ask what it was like to watch my daughter's hair completely fall out.  We live with alopecia NOW, and all the challenges that come with it in the present.  I think about the future often, and wonder what affect alopecia will have upon her as she grows.

But what is behind us is behind us, right?  Or so I thought until that picture, and a thousand memories washed over me.  I remembered the little girl she was.  I remembered the way I delighted in her adorable appearance and put little bows in her hair.

More pointedly, I remembered the way I thought my life would be, and how I wanted it to be.

A bald child wasn't exactly in that equation.

I know it's just hair, and I know it probably doesn't make any sense to anyone but me, but between the moment that picture was unknowingly snapped and now...

Something died.

And yet, somehow a new life was begun, too.

Was it my daughter that "died"?  I feel guilty admitting that the girl in the picture doesn't seem to be the same daughter I have now.  (Though it makes sense in my head...)  There are no pictures on my walls of that little girl.  She is only a memory.  Yet every day I love and wrap my arms around a young, beautiful, bald girl I see blossoming before me.  It's hard to put into words this very real distinction I carry between these two girls.  Before alopecia and after it.

But maybe it's not her that "died," but me.

When I think back to who I was before alopecia, I am a different person.  As everything was literally falling apart around me and I feared my daughter's health was in jeopardy, it surely felt like death.  I couldn't have survived without an older woman in my life who offered to sit in my living room with me week after week, listening to my fears and my cries, and oh-so-gently offering me the comfort that only Christ can offer when we are afflicted.  She got down into the mud with me, and over a loooong period of time, helped pull me out enough to see me come to a point of acceptance with God's story for my life.

I know that our story with alopecia was not just for Caroline.  It was just as much for me.

I came to church this morning still feeling very raw from the emotional trigger of that image.  The sermon's title, "The Story Our Life is to Tell" particularly peaked my interest.  Could there have been any better timing to hear the words of 2 Corinthians 4?

"We have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us...For we who live are ALWAYS being given over to death for Jesus' sake, so that the life of Jesus also may be manifested in our mortal flesh.  So death is at work in us, but life in you.... Though our outer self is wasting away, our inner self is being renewed day by day..."

I couldn't believe my ears.  The Bible was telling me exactly what I'd been feeling all night... that we are always being given over to death, that we are not sometimes, but always carrying in the body the death of Jesus, so that life may also be on display.  It was confirming my feelings that with alopecia, I had faced a death (of some sort) and yet have been given new life through it.

Death and life.

The pattern of the Christian life is one of death and life.

I'm not speaking literally here (though that, too, is true for the Christian) and it's not necessarily one right after the other.  The pattern doesn't need for one to end in order for the other to begin.  Because in our stories, as we're taken through sufferings and "death," things usually don't wrap up nicely, just in the nick of time for there to be "resurrection," do they?  Rather, there is always death, but yet it's IN THAT death(!!), we experience the resurrection and life of Jesus as God SUSTAINS us through it.

That couldn't be more true for my story with alopecia.

There are times of "death" in our stories where we are afflicted, perplexed, persecuted, and we feel struck down.  But God intends to use those things to put on display the dying, yet the life, of the Lord Jesus, both in ourselves and to others around us.

I don't understand all that God has done, but I need the faith and confidence to believe that He is telling a better story with my life than I ever could.

best start to the new year...

We just passed the 4th anniversary of Caroline's hair falling out.  I can't believe it.  She's lived longer without hair than with it.  How crazy is that?!  She doesn't even remember what it feels like to have hair.

At that time we were hearing about this thing called "alopecia" for the very first time in our lives.  We had no idea what it even WAS.  A fellow RUF campus minister connected us with a former student of his who also had alopecia, Molly.

Turned out, Molly was (and is!) a godsend to our family.

The first time I spoke with Molly on the phone years ago, I hadn't quite accepted that Caroline's hairloss was only alopecia.  (Caroline was having many more symptoms than just hairloss, and some bloodwork had come back showing the possibility of celiac disease, which is why we put her on a strict gluten free diet to see if that reversed any of the issues she was having.)

Nevertheless, I listened to Molly's story with heightened interest.  She recounted her experience losing multiple patches of hair as a teenager.  She told me what it was like wearing a wig for years, until she ditched it and felt she could live more in light of her justification in Christ without it, confident in being who she was, free from other people's approval.  

I wanted to know how her parents supported her, what they did and said that was helpful to her.  I wanted to know how she dealt with people's reactions and stares.  I think ultimately I wanted to know things would be okay.

I'll never forget how fast my mind was spinning as she spoke.  Will this be MY daughter's story, too?  Are we also looking at a LIFETIME without hair?  The thought was so overwhelming at the time.

Yet, Molly was one of the most amazing people I had ever met.  Her beauty radiated, even through the phone.  As she spoke, I realized that where she was now living in CONFIDENCE, I had been living in so much FEAR.  What she decided not to place value on, I had been placing TOO much value there.  It was such a helpful and unexpected wake up call to me. 

I'm sure that was a typical alopecia conversation for Molly, but to me, it was nothing short of life changing.  

So when Caroline's diagnosis was indeed alopecia, I decided to make a children's book and call it "Everybody's Got Something."  In it, I included a page (above) about different types of alopecia and people we had met with the same condition.  (Molly's form of alopecia, alopecia areata, where she loses and re-grows patches of hair at an unpredictable pattern, is actually the most common form of alopecia.  Caroline's form, called alopecia totalis, is a little more rare.)

Even though I've only spoken with Molly over the phone a few times and she lives many states away, she has become a household name in our family.  

So when it was time to drive from Virginia to Texas (and back) over the holidays, we decided to make a quick stop to finally meet her in person!

And I'd say there couldn't have been a better way for us to kick off 2014!   What a special and surreal moment for us to sit across the table from Molly on New Years Day!  (She actually said she was a little starstruck meeting Caroline, too!  ha ha!)

She and Caroline were instant buddies.

I'm sure we were quite the spectacle of the restaurant!, but you know what?

I didn't even notice or care.

Molly gave Caroline a beautiful gold necklace with a cross and a letter "C" charm on it.  So, so thoughtful.

(and just in case you're wondering, my last post about giving too many gifts certainly doesn't apply here... he he)

Even over a quick dinner, these girls hit it off.  (I absolutely love this picture!)  Caroline told me afterwards in the car that she thought Molly was SO beautiful and SO nice.  (You can imagine how happy my heart was to hear that.)

Molly, thank you for being both a friend and an inspiration to us.  God was so good to intersect our paths.