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.

touch it...

"Do you want to touch the glider?" the woman at Nature Zone asked the kids as she took the tiny furry animal out of its cage.

 "Ooooow," Jameson gasped.

There was much fear and trepidation.

Did he do it?

Yes he did!

Ahhhh, good job, Jameson!

transitions...

Just when you think you're into a groove with kids, there's yet another transition around the corner.  This time around, it's leaving us feeling quite ragged...

Over the weekend, Jameson became an escapee crib climber (in the middle of the night, to be exact!).   And once he discovered his new unbridled freedom, there was just NO containing him in a crib any longer.

We endured as many attempts to stay in the crib as we could possibly muster before we decided to make the switch.  Containment was obviously now out of the question, so the issue became: did we want him falling from the top of a crib or from a small toddler bed?...

Yeah, this was such an exciting transition when it was Caroline.  This time around, we're not so happy about the switch.

I happened to really like the option of containment for a 22 month old, especially at night.

To make this transition even more fun, the timing coincided with Jameson having a cold and a case of pink eye!  Yep, good, good times are being had all around our house!

Nevertheless, I think he likes the bed.  Well, that is, until he hears the slightest sound that wakes him up and he climbs right out of bed to come find us... if only we could just get him to STAAAAY in that new bed of his, we'd be in good shape.

It feels like we're back to the newborn phase-- up and down all night.  We're all feeling the effects of sleep deprivation.  (Except Caroline.  Thankfully that girl could sleep through a tornado.)

We could use prayer.

And sleep.

white mama at the black salon and beyond...

Y'all.  You'd never believe it, but this white mama might be able to learn a thing or two after all.

 Fourth hair cut today, and there were miraculously NO tears, NO screams, and NO attempts to hit me or the stylist.

(Can I just get a high five?  Thank you.)

And no, it wasn't the mound of crackers and the toy violin bow in his hands that made the difference.  (though those didn't hurt, I'm sure)  And it wasn't even the fact that I took him to a different barbershop this time.

Wanna know what saved me?

Some EXCELLENT advice from a woman who owns a black beauty supply shop here in town.

You won't believe how we found this lady.

One Sunday after church-- of course, the day when Jameson's hair was ESPECIALLY dry and "nappy"-- a black woman approached our table at the restaurant and kindly told us we needed to go see this lady.  Like, she was pointing us to the Yoda for black hair care, I suppose...

Honestly, it was hard to not take her comments personally at first.  Even though I knew this woman's intentions were to be nothing but helpful to our family, it still felt like she was telling me I didn't know what I was doing.

Well... she's right.  And I just needed to get over myself.

We need help.  (As transracial parents, we'll forever need help, and for a whole lot more than hair!) Marc and I decided to track down this infamous woman, and we are so, SO glad we did.  She couldn't have been any more helpful and encouraging to us, understanding what type of look I was wanting and showing us exactly which products to use in his hair and in what order (kinky hair is a process to care for!).  She was nothing short of a godsend!

So you wanna know how I've been messing up as the white mama at the black salon?

I've been naively taking Jameson into the salon with dry, tangled up hair, fully expecting the stylist to wet, detangle it and prepare it for cutting.  Yeah, that's a meltdown waiting to happen.  Who knew that if I took the time to wash, detangle, condition, and brush/pick out his hair at home right before heading out the door, we'd have NO problems at all.
Not even a whimper.

Brilliant!

The little casanova himself...

You know, our move downtown to a diverse neighborhood has been everything I'd hoped it would thus far.

Honestly, since Jameson came into our lives, it just amazes me how much more comfortable and "at home" I feel with and around African American culture.  I am surprised at how "out of place" I feel when there are little to no black folks around.  I can't believe I'm becoming fairly comfortable talking about race now, either, because in white culture, we're just supposed to ignore the topic altogether.  Who am I??  :)

I love how God is maturing and transforming me through transracial adoption.

It makes this little white mama's heart SO happy to see my son playing with other children that look like HIM.  From the outside, that may not seem like a big deal, but when you're the minority-- in your country, in your city, in your church, and especially in your own FAMILY-- it's a big deal.

 A few of you have asked about Caroline's transition to a diverse neighborhood.

"Mom, I've noticed that there are a lot more chocolate skinned people downtown than in our old neighborhood," she observed from the car one day shortly after we moved.

"You're right, Caroline!  There ARE.  That's one of the things we love about downtown.  It's got people with chocolate skin," as I pointed to someone walking on the street, "and people with light skin," I pointed to another person out the window, "and all different colors in between.  Downtown looks more like God's family, which is made up of all different kinds and colors of people."

"Yeah," she said.  "It's so great."

The move has really been just as good for Caroline as it has for Jameson.

I love seeing her make friends with the girls in our neighborhood.

Jameson has the benefit of being around his own culture.

Caroline (and Marc and I) have the benefit of entering into relationships with people who, in some ways, are different from us.  What a blessing to have a bigger perspective than that of your own.

God has beautifully designed us all in His image.

He is at work in bigger ways than I ever imagined.

And I consider myself so privileged to join this crazy journey called transracial parenting.

Photos by Caroline, including Title by Caroline...

 Hi, Friends!
I love to take pictures of things.
This first one is my Dad wearing his helmet over his face after a bike ride on the trails. He is smiling under the helmet.

My mom is funny. She's holding a bunch of toy\fake dollars! (Those are really mine. They go to a thing we have in a basket in the playroom. 

Um, Oh right! This is me! I'm close up to the camera. Can you see the polka doted blanket behind me? That's a fort i made. Do you make forts, too? 

Jameson, you have been 1 sense November the 8th. Today is September 13th. You have been a wonderful brother to me. Jameson can get a ball any time he wants and finds a vacuum stick, Toy bat, remote control, anything that looks like a stick and he thinks it is a bat and runs over to it and scoops it up and just holds it and only uses the ball!

Oh, hearts, You are a famous star! 

Shh! Don't tell anyone this! Secret for you and me! Here we go, "These are stickers and i use them to hold up my signs i make. 

I made a sign that said: No Trespassing 

Haha!" 

I have a piano in my house. Do you? Well, I have a pink dress on in this picture. That loop is my handle of my camera. I have a piece of music on my piano. The title is called: WE WISH YOU A MERRY CHRISTMAS. Can you see the notes (music notes) on the piece of music? I was just about to play that.

 My Dad is cutting a watermelon in this photo. I LOVE watermelons. We bought one at the store I think yesterday. Mmmmmmmm! YUMMY IN MY TUMMY! HaHa!

"Tis' hello, Whoever is looking at this photo! I am Callie! I am Caroline's cousin who moved VERY close to her." said Callie. "Thanks, Callie," I said. "I don't think i need you writing on my blog anymore." "OK, Caroline!" said Callie. (Callie was not actually writing on my computer. I just put that on there to make you strong inside)

PHOTO
Ryan and Holly together.
Holly is the one sitting on the left side on the couch. Ryan is the one playing the guitar and sitting on the right side on the other couch. Jameson photo-bombed this picture.

I am not actually writing on the computer in this photo. I am just putting my finger on the T button. Oh! Shh!  Another secret! "Do you see that red button in the middle?" Short secret, Huh?









BOOHOO! I DON'T WANT TO GO. HMPH! HMPH! HMPH! I'LL NEVER LEAVE! BOOHOO!
I guess i have to. Bye! Wait, ballet friends! I need to tell you a few more things! I took this photo for you! "That was 1." you said. Thank you for being here. "That was 2." you said. Do you like me? "Yes, and that was 3. TIMES UP!" you shouted. No, i have about 4 more things to tell you. "Then that would be several." you said. Okay, several. In football there is touchdowns. In baseball you just get one at a time. "1..." you said. WOW! I love it! "2..." you said. I LOVE aquariums! That was a thing on TV. "3..." you said. Football is so amazing. Isn't it? "Yes, and thats 4. NOW! TIMES UP!
O.K., Bye, ballet friends! Bye, Bella! Bye, Kathy! Bye, Katie! Bye, Mary!

venting...

I'm overwhelmed.

I struggled for years, praying to God to one day have children of my own.

And here I am.  It's hard.

I suppose it would be easier if being a mom was all I "did."

But it's not.

I'm a campus minister's wife, and trying to be an involved one at that.  I desire to do more than I'm able to, and I'm frustrated.

I'm a part-time worship director at our church.

I'm reaching out in my neighborhood.  I'm ministering to a poor family.

I'm a chef.  I'm a maid.  I'm a chauffeur.  I'm the take-care-of-everything person.

I offer to help someone with this and someone else with that.

I'm the one that sees to it things get done.

And I'm tired.

And I'm still not able to do all that I want to be able to do.

The problem lies when the things I want to do, the people I want to help
cause the rest of my life to fall apart.

I honestly feel trapped within motherhood right now.

It feels like climbing a mountain just to get groceries.  It feels like I can't get out, and I'm imprisoned to the schedules of naps and school.  I'm limited by what I'm able to do by the necessity to procure childcare. (which I hate doing)  It feels like there will never be peace and quiet, or a meal without food covering the floor again.  It feels like I'll never get a date with my husband where I'm not watching the clock and feeling the guilt of the babysitting tab I'm racking up.

How do people do it?  Am I wishing for too much?

I don't have a mom here.  I don't have any help "built in."

I don't have an endless check book, either.

I don't know when wanting help turns into needing help anyway.

Pardon the venting.

It'll be okay.

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.

40-60-80...

Lots of celebrating around here this month.

Not only was it Marc's 40th, but last weekend was Marc's dad's 80th birthday!

AND, on top of that, Nanny and Papa will be celebrating 60 years of marriage this coming week!   

40-60-80!  

Even though Papa is suffering with debilitating dementia, we're grateful we could make a quick trip down to South Carolina to celebrate his 80th birthday with him.  

Getting ready to feed 75+ people!

I snapped this picture while there was still room to move in Nanny's kitchen... 

Jameson with cousin Julius

Marc's sister, Sharon, with her two daughters, Callie and Laura

It was a sweet time for many of Papa's friends, neighbors, former co-workers, and family to drop in and wish him a happy birthday.

Marc cherished every moment.

Happy 80th, Papa!  We love you very much.

lordy, lordy, look who's....

Cue the world's smallest violin, because this guy was so bummed leading up to his 40th birthday.  With the busy start to the semester, there wouldn't be any big surprises.

Or so he thought.

Little did he know, I'd been scheming for weeks, thanks to a secret facebook group and friends that did a great job of keeping their mouths closed!

Gluten free birthday cakes are sadly nothing to write home about...

Marc thought this little shindig at home was THE celebration with James and Callie (our family in town).   Dinner.  Cake.  Presents.

And then a quick date downtown for just the two of us.


As we left the house, Marc was putting on running shoes in hopes that he and I could get some exercise.  Ummm, let me see...  THAT'S not gonna happen.  I made up some complaint that wouldn't throw him off.  And it didn't.

"Well, if you're gonna wear that, I guess I'd better go put a polo on at least."

(That might be a good idea...)

We hopped in the car, and Marc started looking at movie showtimes online.

"What are you doing?" I attempt to say nonchalantly.  My heart was beating OUT OF MY CHEST. Somehow I've got to get him to the place where 30 people are currently assembled without giving it all away!!

"Looking up showtimes.  We never get to see a movie," he responded, engrossed in his phone.

While this is completely true, and we never see movies anymore (because I refuse to pay WAY too much babysitting money to just sit in a theater when I can rent the dumb thing at home later anyway), I knew this would not be the night.

"Let's just go," I said.  I knew that just inside my house, James and Callie were breaking the news to Caroline and Jameson about the surprise party and rushing them to get shoes on and GO!

We had to get out of that driveway or this plan could be BLOWN.

Thankfully, Marc reluctantly agreed to leave, though we still debated on where we should go.  My mind was going a thousand directions-- how was I going to convince him without giving it away?

I needed a stall tactic.  Just for a few minutes so that James, Callie, and the kids could get to the restaurant and in place for the big moment.

"Let's go down to the river," I said spontaneously.  "We can take a few pictures together like we did on our anniversary several years ago."

"Okay, that sounds good!" he said.  Marc's always up for spontaneity.  "We can sit there and have our date."

Nope, we can't.  But I'll figure that out later.

So down to the river we went.  I'd never been more nervous in my life!

Thankfully, there was no great place to sit, and thankfully, the mosquitos were doing a number to my pale, white legs, so it was no problem to get in the car rather quickly and go.  Without saying a word, I took the driver's seat.  This car is going to that restaurant.  He still had no clue.

Even as we pulled into the restaurant, Marc was throwing out alternative ideas of places to go!  Babe, could you just maybe GO WITH ME HERE... 

 He had no idea all these guys were ready and waiting on him to celebrate.

We walked through the restaurant towards the back patio, and I thought he'd surely know something was up at this point.

 "What's James doing h....." he began asking as the door opened.   And as he walked out onto the patio, it quickly became apparent what was happening when everyone yelled out "SURPRISE!!!"

 Happy birthday to you,
happy birthday to you!

Yessss!!!  We pulled it off!!  It was even BETTER than I could've imagined it.

 He was greeted with hugs.

And with a cane.   (he he!)

 It couldn't have been a nicer evening or a nicer atmosphere to enjoy a relaxed celebration.

You don't know how relieved I was for the surprise to be OVER!!

 Happy 40th birthday, my sweet Marc!

I love you, I love you.

Here's to many, many more years to come.