Tuesday, July 30, 2013

gone rogue...

Well folks, just like that, he's gone rogue.

And he won't be stopped.

Yesterday morning, it's as if a switch magically turned on, and this guy was off to the races crawling.(!!)

Naturally, big sis figured out the foolproof way to keep this boy movin'.

1)  Set up a stockpile of favorite toys to lure him in.

2) Wait while he considers it.

3)  If he doesn't get going right away, he may need some pointers and encouragement.

4)  And he made it!

5)  But before he can enjoy it TOO much, (heaven forbid!) snatch it out of his hand and place it on the OTHER side of the room.

He turns.  He sees it.

And there he'll go again.

(We'll see how long before that part of the game gets old...)

There's no telling how much exercise he got that first day!

He's pretty proud of himself, and we're proud of him, too!

Alas, we enter the world of baby gates and childproofing again....
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Sunday, July 28, 2013

she's taking over...

I've noticed this girl is slowly taking over our house.

Caroline's house.

Jameson's house.

And then I found these randomly around the house:

Caroline's table.  (Oh, excuse me- I mean, Caroline's table!!)

Caroline's living room.

Not pictured: Caroline's kitchen.

Even Caroline's bathroom.

Woke up one morning to find her throwing a "party" in the house, complete with streamers.

She even decked out her lil' bro for the occasion.

He didn't seem to mind.

This party gal's got a mind of her own!
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Friday, July 26, 2013

talking to preschoolers about alopecia...

Well, almost a year later, I've rummaged around to see what videos were lingering on my video camera, and I found this little "ditty" I thought I'd share with you guys.

It was my first time ever speaking to Caroline's preschool class about alopecia as school was beginning last August.  (at Caroline's request)

Sounds ridiculous, but I was really nervous about this!  I'm not exactly an old pro when it comes to public speaking about alopecia!  Not quite ready to be a spokeswoman for it, although by default, I've sort of been thrown into that role.  I didn't know what to expect from the kids, and I didn't want it to be embarrassing to Caroline, either.  As you'll see, the 4 yr olds were pretty quiet about it, but several of their parents later thanked me for coming and explaining, so apparently the point got across!

Wednesday, July 24, 2013

almost mobile...

This guy...  (holding on & standing oh-so proudly by himself- is he not the cutest thing ever?!?)

is almost mobile!  

Put this little guy on the floor, and he'll quickly begin maneuvering himself from sitting up to crawling position to sitting up again.

He can scoot himself backwards and rotate himself around on his belly...

And any day we anticipate him taking off.

Oh, how our life is about to change...

Until then, we're enjoying confinement.  :)

Quick health update on Jameson:  It's looking like we are possibly on the path towards yet another ear infection.  Jameson's reflux has caused him to become congested in his nose the past two days, so much now that it is affecting his sleeping and eating, and I can tell he's not feeling good at all.  Marc is away this week at RUF staff training, and I am home attempting to survive with two kids.  Thankfully, I have an extremely helpful mother-in-law who traveled up from South Carolina and has come to the rescue for a couple of days!  But since we've been through this cycle so many times with Jameson now, I can almost bet that in the next few days, the congestion will go to his ears... which means we've got some more long, sleepless nights ahead of us...

He will have a pre-op appointment tomorrow with the ENT who will be putting the tubes in his ears on August 5, so I can have them check his ears for signs of infection then.  But I'm becoming nervous about the timing of all of this, and if an infection would interrupt the plans for the tubes.  We've GOT to get these tubes in to slow down all of these infections!!  The poor guy pulls on them almost every time he drinks from a bottle.  :(  I think he will feel SO much better after the surgery.  So we'd appreciate any prayers for his continued health, the upcoming surgery, and Mommy and Daddy's physical endurance to get through it all.  Thanks!
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Tuesday, July 23, 2013

baldness as a megaphone...

Last month, after our last beach trip, we happened upon a wig shop in Norfolk, VA.

Initially we went in just to look and let Caroline bask in all the different types of wigs.  The synthetic wig we had gotten her just a few months ago was already turning "ratty," like a Barbie doll that has been brushed too many times.  This shop didn't have any children's wigs, but for only around $100, we found this brunette little number with real human hair.   Pretty cute, eh?

What she was most excited about was putting CURLS in it.  (not possible with the synthetic wig, where the style is more "set")  So a quick trip to Wal-Mart got us a set of foam rollers to try.

Can I just stop and say this is something I never imagined myself doing?!?  Putting foam rollers on a WIG for my bald daughter?!?  Sometimes, even after three years of baldness, I am still shocked this is my life.  Nevertheless, she was beyond ecstatic at the option.

So we let the hair dry overnight on the wig stand.  (wouldn't it be cool if we could all do this with our hair?  Especially in the hot summer....)

And the next morning, here was my little beauty.

She was so excited about her new look.

She says the wig is a little itchy, but not as much as the other wig.  The only problem is that it is a little bunchy at the back of her head because of the bigger adult size, but the curls help hide that.  We might just be a little limited on hair styles, but hey- she's just happy to have hair as an option in the first place!

My heart is SO happy that she's only choosing the wig option every now and then for fun.  If we're dressing up to go out as a family, sometimes she'll ask to wear it.  But usually she just likes to wear it to church- I think it's more like a dress-up accessory for her, which is exactly what I had prayed for.  (thank you, God!)

Alopecia seems to be a topic we're discussing more and more everyday.  "Mom," she asked yesterday in the car, "In heaven, are we going to have new bodies?"

"Yes, they will be our bodies, but glorified and better."

"I think when I get there, I'm going to ask God for really, really long blonde hair."

"I have a feeling He will be delighted to give you all the hair you want," I told her.

"He likes to give me what I want?" she seemed surprised.

"Yes, of course He does.  Just like Mommy and Daddy love to give you things your heart wants.  But just like Mommy and Daddy choose what is best for you, God knows what is best to give us, and that's not always what we want.  There are some things that God decides not to give us, or to take away from us, and we don't know why He does.  I don't know why He decided you should have alopecia, and I don't know why He decided that I should have my birthmark on my leg.  But He knows what is best for us."

"When my hair started falling out, did you just want to throw me in the trash?" she innocently asked.

*Cue tears here.  She has NO idea.  How can I even BEGIN to tell her what a long, draining emotional and spiritual journey I took as her hair was slowly shedding over the course of ten months?

"No, baby.  I never wanted to throw you in the trash.  I was very scared that my baby was sick because I had never heard about alopecia, and I was sad that I couldn't keep your hair from falling out.  We took you to several doctors to find out what was happening, and finally, we went to one of the best doctors at Duke..."

"DUKE?!" she interrupted.  I could tell she thought that was a funny name.


"What's DUKE?"

"It's a place in North Carolina with alot of really good doctors," I explained.  "And it was the doctor at Duke that told us that you had alopecia totalis."

"When he told you that, what did you think?" she quickly followed up.

Wow.  This girl has always been so perceptive.  What exactly WAS I feeling when I finally received her diagnosis?

"I was SO very happy that you were not sick," I stated simply, and on the conversation went from there.

Alopecia took Caroline's hair away, but it gave us WAY more to talk about.

I want my daughter to enjoy this new "hair" without letting its absence (or presence) define her.  We talk about focusing on what God has given to her, and not what He has chosen to take away.

As much as I sometimes hate alopecia, I am able now to see blessings in it as well.  I know God has purposes for Caroline, and I'm confident her experience without hair will fit into His plans for her.

Kids will tease.  Adults will stare.  But people will always be intrigued.  And they can't help but listen to what she, as a bald girl, has to say.  What a ministry she could have to others someday through this experience.

Oh God, that You would use my daughter's baldness as a megaphone for Your glory.

the great outdoors...

His first time mowing.  (I particularly like the combination of ear muffs and the unsure expression.)

Look what she found!

Chillin' in the wagon on the porch.

Enjoying her umbrella.

The great outdoors.
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Friday, July 19, 2013

opportunities to lose...

My daughter doesn't handle losing well.

At all.

Any lofty idea of a Friday-night-family-game-night would last about five(?) minutes in our house.  But the second my kid would realize she wouldn't win?  Everything would be downhill from there.  Whining, stomping, crying and complaining, quitting.

You get the picture.

In all honesty, I don't think we have been those parents who let their kid win at every game.  But on the other hand, we also haven't been the parents who have given her lots of opportunities to lose, either.

So naturally, we're sitting around thinking, How can we get our child comfortable with losing?  (ha!)  Probably not the most popular parenting technique, I realize, but I want my children to know they're not going to win every time.  Life has alot of struggles and defeats, and I'm doing you a disservice as a parent if I don't introduce you to that fact now, right?

Well, that's when the idea of signing her up for soccer camp appeared.   Because in athletics, you win and you lose.  Sometimes you make a great play.  Many times you don't.  But you keep playing the game, right?

It seemed like a great opportunity to teach her to lose.  (and to win, of course...)

So I, being the loving parent that I am, signed my kid up for a soccer camp ranging from ages 5-15, making my child one of the youngest and smallest there.

And the application didn't say that any previous soccer experience was necessary, but when I arrived the first day and my kid was the only one without shin guards and full-out soccer gear, um, I got the picture.

(hey, I thought I was doing good to have found some used cleats at a consignment shop the day before!)

Caroline was SO excited to go to camp, but I could also tell her fears about her own alopecia were surfacing as she'd think about it, too.  "Are the kids going to like me?  Can I wear my wig there, mom?"  :(

The few days before soccer camp started, she actually came down with some type of sore throat and fever bug.  I was SOOO close to keeping her home the first day of camp, but at her begging and insisting, we decided we'd let her give it a try.

Well, can you see where this is going?

I take a BALD little girl with a sore throat onto the field, acting very lethargic.

It wasn't long before I heard "Why can't she run?" from a boy yelling to the coach in reference to Caroline's lack of energy.

I see my daughter sitting alone over to the side, pulling up grass on the field with her head down.

Naturally, the coaches weren't going to push her.

Do I tell them she's got alopecia, and not cancer?  I thought.  That she IS a little sick, but not sick in the sense that they *think* she is?  On the camp application, I had given them a heads' up on the health section in hopes that alopecia wouldn't be an issue, but the first day was proving to be awkward for everyone on many fronts.

Marc and I decided to just let it go and keep watching.  We were the only two parents out there anyways, and I was already feeling a bit out of place and didn't want to be the "helicopter parent" that swooshes in at the slightest problem.

However, at a water break when I heard one of the boys say loudly in front of Caroline, "That's a GIRL??  I thought that was a BOY!", you better believe I instinctively flew up off of my bleacher and walked over to the young man.

"Caroline, did you meet this boy yet?"  I, the Mama Bear, tried to remain calm and mature as I turned to him.  "This is my daughter, Caroline.  And what is your name?"

He was pretty shy at that moment, and I think he got the hint.  No more problems from then on.

Then it got to drills like this one, where each child would dribble and attempt to shoot a goal.

All my kid basically knew about soccer was how to kick a ball to each other, so she literally had NO idea it was a "contact" sport.  When it got to be her turn to shoot, she pointed at the goalie to move out of the way for her so she could score!!!  ha!   I heard her walking up to the coaches and saying, "What's defense?  What's dribbling?"  Way to go, baby girl!  Make 'em teach you.

As you can see, her technique and aim was a little lacking.  :)  (I love the look on her coach's face at this moment...she's thinking, what do I DO with this one?)

Oh my gosh, it's HARD to watch your kid fail!  Caroline has just always been the child who's ahead on every milestone, intelligent as all get-out, and she's currently at a reading level of a 2nd-3rd grader.  (before entering kindergarten!)  But I just kept reminding myself, THIS is why I signed her up.  She needs to know what it is to NOT excel, to have to work and practice to get something.  Oh man, Marc and I were terribly uncomfortable watching it all unfold.  She wasn't handling it so well, partly because she didn't feel well, too.

However, there was a redeeming story through that first day.

In Caroline's small group of 5-7 year olds, there were only two girls: she and a girl named Rylie, who was one year older and obviously very gifted at playing sports.  The two became instant friends (see above), and as the only girls, they began looking out for each other.

At one point a boy kicked my Caroline's ball away, which made her begin crying.  It's okay!, I wanted to shout across the field, go kick it out of HIS control!  (ha ha- as much as I try, I guess I AM that parent)

But instead, her heart was crumpled.

And then in that moment, I watched sweet little Rylie run over to my daughter and wrap her arms around her with the biggest hug.  I watched as Rylie encouraged her, and Caroline got back into the game.  I thought, Thank you, God, for this sweet, sweet provision.

"So, how'd it go?" I asked Caroline as we were walking to the car at the end of the first (excruciating) day of camp.

"It was SO, SO fun, Mom!" she replied.

Really???  Did she just see what I just saw???  Well.  Well, okay!  I was simultaneously quite speechless and so utterly relieved at that moment.

"And I can't wait to go back tomorrow," she added.


The rest of the days were a blast to her.  (I think mostly because she had made a friend to share it with.)

You know, I'm so proud of all that my baby girl learned this week, many things well beyond the game of soccer.

And thank you, God, for your sweet provision of a friend for Caroline.
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Wednesday, July 17, 2013


How do people do life, I'm wondering?

Perhaps my expectations are way too high, but right now, I really am torn and overwhelmed at how I am supposed to simultaneously raise two amazing children, put food on the table, keep a relatively clean house, exercise my body, nurture my marriage, work a part-time job, invest in the lives of students and friends,  have time for rest and leisure, help my husband in ministry, and stay sane in the process?!?  I feel like I'm failing at all the big things, and it doesn't afford me with an opportunity to accomplish any of the smaller tasks looming over me.

I mean, in one sense, I know nobody has found the balancing act, right?  I share this because I'm sure I'm not the only one feeling like they're treading underwater.

In my head, I know there will always be portions of life that are out of control at varying times.

But still, my heart yearns for peace.  Instead it feels restless and overwhelmed.

Is this just the pangs of adjustment to a baby in the house?  Surely life will not always feel this impossible, right?

I know Jesus tells overburdened, weary people like me to come to him and he'll give me rest, but in all honesty, I'm struggling to know what he means by that.  My house will not get cleaned.  My children will not get fed.  My clothes will not get washed.

Whatever this rest is, though, Jesus, I need it.

Even in all the stress, taking time out to snap a few beautiful pictures and sit still to blog about them provides me with some measure of mental clarity.  It reminds me of what and who I love, and how I get so wrapped up in my own desire for order and peace.

Look at this guy!  How can I look at that smile and not be so grateful?

Oh!  By the way, we've finally got our surgery date scheduled for ear tubes the morning of August 5th. (hooray!)

"Mom, don't say the word surgery, because that makes me afraid that Jameson is going to get a shot," she tells me.

But with 7 infections in 8 months, though, this guy needs some relief.
(and so do the rest of us, for that matter!)

Perhaps that will allow our family to rest a little easier.

In the meantime, this gal has NO problem enjoying the little moments!
I'm so thankful for her.
She forces me to stop in all the madness and enjoy reading or playing together.

I know one day I'll look up, and this will all be a distant memory.
These are the days when even that gummy little smile and twinkling eyes
make your heart sing.

So as Marc and I feel the tension of how to "do" life in this season,
pray that we might know His peace, and that we might learn to rest.
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