New Vocabulary

Hospitalization. 

Neurologist.

Blood tests.

Skin biopsy.

EEG

MRI

CT scan ("you mean that donut thing that I put my head in?")

Seizures. 

Words and phrases that should not be part of any child's vocabulary.

Words that are now part of Bailey's.

To the point that, one day after asking if a neighbor/friend could play, Bailey returned with the news that: "She just got back from the hospital," and without missing a beat, moved on to ask, "Can we see if so-and-so can play instead?" Because hospitalizations are just what we do. 

Many of you have followed our journey through sporadic Facebook posts and haphazard Instagram posts, but now that we've reached a place of (relative) stability, I thought I'd lay out the full story, all in one shot, for interested parties. 

It started last October on a seemingly normal Sunday morning. Bailey had been complaining of a headache and stomachache the night before (and again in the morning), so we decided that she'd stay home from church with Brandon while Boston and I GoJek'd to and from IES South. I even took a picture of my purse sitting by Boston's motorcycle helmet under my chair at church with thoughts of a #jakcitylife Instagram post later that afternoon.

Little did I know...

Brandon watched Bailey have her first seizure and I will forever be indebted to our neighbors Bless and Erna who jumped into action to help my shirtless and shoeless husband get our baby girl to the nearest emergency room. And I know that God was looking out for us, seeing as though Bless just so happened to recruit a school driver to take her to a market that Sunday morning and he just so happened to still be in the parking lot with a car, ready and willing to drive our Bailey girl to safety.  If that doesn't scream divine intervention, I don't know what does.

I'll spare you the play-by-play of the next few days, as we went from the emergency room at the local clinic, to the emergency room at a Rumah Sakit Bintaro (recommended because they had a pediatric neurologist), to the high-care unit, and finally to a private room. By the time we checked out of the hospital, she'd had blood drawn, CT scan, EEG and countless vital checks from countless nurses. The EEG and CT scan both came back normal and we were told that up to 70% of childhood seizures are inexplicable, and that 70% of the time, they do not reoccur. Not the best numbers, but better than 50/50.

A month passed, and with each day we breathed a little easier, slowly progressing from a point where we were examining with microscopic precision each and every blink and twitch and misstep, to just jumping at every OTHER blink and twitch and misstep. We were making progress. We were in the 70%.

Just kidding.

In November, Bailey had a second seizure. On another Sunday morning, I returned from a morning run to find Bailey and Boston lounging on the couch watching cartoons. Bailey was - again - complaining of a stomachache and headache. Partway through my shower, Brandon rushed into the bathroom and shouted, "Get out now. It's happening." Wrapped in a towel, I held Bailey's hand as she lost control of her head and stopped responding to requests to squeeze my hand. And that look in her eyes. She wasn't there. And there wasn't anything I could do to bring her back.

Thanks to (Father) Abraham, Brandon again got her to the emergency room. Boston and I followed on an ojek once I was decent and had grabbed a shirt and shoes for Brandon (have I mentioned that he hates wearing clothes?).  After Boston and I arrived, Bailey proceeded to have a second seizure (this time actually convulsing on the bed). Mr Abraham quickly distracted Boston with some coloring. And the seizure; I can't describe it. I just can't...

Another ambulance ride. Another emergency room. Another hospital. (And Babs McGee had another sleepover with Auntie Gretchen and Uncle Glenn...we couldn't ask for better friends). This time we swapped the CT scan for an MRI and repeated the EEG. The MRI was normal, but the EEG showed seizure activity.

She was diagnosed with epilepsy.

Our baby.

She has epilepsy.

She's on daily medication - three times a day - to keep her brain functioning in a normal way.

Almost immediately upon her diagnosis, we were urged to seek a second opinion. Indonesia doesn't have the greatest reputation in terms of healthcare, and we are short plane rides away from countries that do (i.e. Singapore and Thailand). We opted to go to Thailand and scheduled an appointment with a pediatric neurologist at Bumrungrad International Hospital for early January, while we were still on holiday from school.

In order to cut costs and spare Boston the agony of waiting around a hospital while Bailey had her appointment, we decided that I would take Bailey on a solo trip to Thailand. It was nerve racking, traveling alone to a new city, but we made it.

The doctor reviewed all of the test results that I brought with me (yes, I packed EEGs, MRIs and CT scans in my carry-on!) and confirmed the epilepsy diagnosis. But as we were talking through her medical history, it came up that about three years ago, she began to develop dark patches on her skin. We had seen dermatologists (and even sought a second opinion) in California when her skin first started changing and were assured that the spots were nothing serious. But for the neurologist in Thailand, the dark patches were a red-flag. He said that the skin spots could be a sign of lupus. And the lupus could be causing the seizures.

You know, because epilepsy isn't enough. How about lupus with a side of epilepsy.

He scheduled appointments with a dermatologist and Bailey underwent a skin biopsy to test her darkened skin for lupus (and other skin disorders). And then began the waiting. We were told 3 days for the skin test that was sent to pathology and 10 days for the lupus test. It was two weeks until we heard about about either.

After a lot of back and forth with the dermatologist to decode the report that we received, we are breathing a little easier. No cancer. No lupus. No vasculitis. They still recommend that we follow up with a rheumatologist to determine exactly what IS going on with her skin. But that isn't an urgent something that we need to address right away.

And that's where we are.

Bailey has epilepsy.

It's not being triggered by lupus.

She will be on medication until she can go two years without a seizure (and then we'll begin to wean her off the meds).

We're at 54 days.

And counting. 

Boo

This month, Bailey, you turned six and there are some things that Mommy doesn't want to forget about you. 

You still play with Girl, the imaginary friend that appeared about the time Boston was born. You caught me tearing up watching Inside Out when Bing Bong disappeared from Riley's memory, but assured me that Girl would not suffer a similar fate. Your imagination is wild. 

You've swam in three swim meets, joined gymnastics, learned to ride a bike without training wheels, and run in your first 2.5K race. Your body is strong.

You're within weeks of completing your first year of formal schooling. I'm constantly amazed at all that your mind comprehends and your curiosity about the things that it doesn't. You love school work and experiments and made-up games with crazy rules (that you somehow always win, hummm). Your mind is sharp. 

You have memorized a new verse of the Bible every week for the past 36+ weeks. You recount Bible stories as we walk, keep us accountable to family devotions, and belt out worship songs in my classroom each morning as we wait for the big hand to be on the twelve. You even debated with your sister over whether God chases us, or we chase Him. Your faith is flourishing. 

You cling to Ibu Minah every Friday when she leaves. You smother your classmates with "huggy time" and insist on me leaving you with a lipstick kiss on your hand when I drop you off for school. You actually cried - real, giant teardrops - when I insisted that Kango (the insect of your invention that was literally falling apart) had to be retired to the trash. Your heart is soft. 

(And you might be a bit of a hoarder)

I am so proud to be your Mommy. 

And I hope that you always save the best bite for last. 

Momma

A few weeks ago, I found myself walking home from school, weeping.  I'd like to blame the John Mayer tracks that were coming through my ear buds, but it's been a while since "Say" brought me to tears.

No, I was teary-eyed over motherhood.  

You see, it wasn't your average walk home. It was a mid-day trek home to grab a swim bag so that Bailey could go to swim lessons after school. Usually our helper brings said swim bag to school at the end of the day and helps the girls navigate to and from their lessons and then takes them home. 

But this Monday found Boston sick, the swim bag sitting at home. 

After lunch I had a prep, so once I dropped my students off with their specialist teacher, I headed out of school instead of back to my classroom. I walked home, got the bag, and brought it back to Bailey's locker.

Such a little thing. So insignificant. So easy, even. 

But easier still would it have been to ditch lessons altogether. To have chosen the grading and prep work that sat on my desk over the sweltering walk to and from the house in my school uniform that still needed to look and smell presentable for the last two hours of the day. To let the truth of Boston's fever be a convenient excuse to miss swim for one week. 

And I'm not writing this to brag. In fact, as I began to cry over this moment of choosing my baby girl's swim lesson over my own work, and as I calculated that I was walking nearly 3K round trip for her, and as I debated whether or not to guilt her - even in jest - about what I had to endure to make sure she could still swim that afternoon, God brought to mind the mommas around the world that walk countless times farther each and every day to get water for their babies. 

And here I was crying over a 30 minute round trip walk for a swimsuit, towel and goggles. Can't forget the goggles. 

But it was exactly the simplicity of the moment that moved me. It was because it WASN'T a grand gesture of love that would be praised and memorialized and recalled for years to come. 

It's because she would never know the mini-sacrifice that her momma made that day for a swim lesson that doesn't mean diddly in the grand scheme of things. It's because I'd do it again if I had to. And I will do it, again and again and again for both of my babies whenever the need arises. 

And they will never know. 

And I don't know. 

I don't know how many times my momma put her things aside to take care of me. 

How many times her priorities took a back seat to my needs and wants. 

How many times she walked or drove back and forth across town for forgotten school supplies, or stayed up late to make soccer snacks that my eight year old self thought just magically appeared. 

For that I wept, Momma. 

For all the times I don't even know about when sacrificed for me, just because that's what mommas do.

I love you, a thousand times through my heart. 

Babs McGee

You turned four last month and there are some things about you that I don't want to ever forget.

You love to wear dresses and skirts, even though your favorite pastimes would put you in the "tom boy" camp. You make tu-tus and swings look good.

This year you started school, and even though you say it's boring, I know that you're having a good time. Your crooked smile when you groan "oh no, not school!" gives you away.

You are a never ending source of cuddles and insist that I either place my finger in your ear or palm your face when we walk down the street. I wish I were kidding.

It never seems like you're listening. I mean never. Yet the other day you informed us that it was John the Baptist that the angel was talking about when Elizabeth was told she was having a baby. Simultaneously impressive and infuriating.

Dancing is one of your favorite things to do. All you need is a soundtrack and a small bubble of personal space and - ta! da! - it's a dance party.  You've been the hit of the cruise ship promenade, restaurant waiting room, and mall hallway alike.

You are also one of the most clever girls I know. Your one liners have us roaring in laughter almost daily. You are stubborn and loving and a wrestler at heart.

Mommy and Daddy love you Starbucks and back!

Rawinala

Five minutes into the tour, I was regretting the decision to bring my students to Rawinala and looking for someone to blame for this misguided venture.

An hour later – as we sat and watched the Rawinala students perform a few songs – I started to hope that a few of my own class would see the Rawinala kids as more than just “those kids with disabilities.”

By the time we left our classroom for the day, it was evident that God had moved all of our hearts. Mine included.

The students at Rawinala all have Multiple Disabilities with Visual Impairment (MDVI) which means that they all have a visual impairment and (at least) one other diagnosed disability.  For my SPH students that have spent their life in relative luxury, the sight of another child with their eyes glossed over with cataracts, or eyelids so misshapen that vision is impossible, is shocking. They balked and cringed and gasped – yes, out loud.

I tried to find a rock to hide under.

While all of this squirming and pushing to get to the back of the group was going on (unheard of in grade 3, by the way; they always want to be at the front of the line), the director at the school patiently explained about the various disabilities that the students had and the ways the school helped them.  She introduced Rawinala students by name, and talked about all of the things that they were able to do despite being blind, or deaf, or in some cases, both.  She talked about the facilities and the features that made it possible for some of the students to navigate the hallways independently.

Shock begin to give way to wonder.

The tension evident in the students’ hunched shoulders began to melt away.

And then a blind student from Rawinala got one of my kids in a bear hug.  Nothing malicious.  Just trying to say hi the only way she knew how.

And another grabbed a hat off of a boy’s head and plopped it atop her own head. 

Three steps forward, two steps back.

More pushing to get to the back and even a cry of “I’m scared.”

Who’s ready to interview your student?

Thanks to a group of amazing moms – who swallowed their own discomfort to confidently lead students to nearby classrooms – small groups of my grade 3 kids were able to navigate a questionnaire about some of the basic day-to-day experiences for the students at Rawinala.  At this point, I think that most of my kids went into “classroom mode” as they whipped out their clipboards and began filling in the boxes on their papers.  A worksheet is a comfortable place to be when you’re eight (especially when the alternative is to try and hold a “real” conversation with a child who can’t see you and might try and touch your face without warning).

Group after group began to finish the interviews and we all made our way back to the main meeting hall. As the director had shared during the tour, many of the students have a passion for – and are gifted in – music, and they wanted to share a few songs with us. 

Again, wonder began to fall over my students. 

“They’re really good, Ms Stacy!”

…

Fast forward to when we arrived back at school.  We were at a pivotal moment in the day. That moment where you want to check out and just put on a film because you’ve been gone all morning and you just need to get through the next hour until dismissal.  That moment where you know the students need to process this experience with some sort of debriefing activity before the whole event melts into being just another “field trip.”

In the words of Ms Sarah and Ms Jenae: “The struggle is real.”

Let’s do this.

Not knowing what responses to expect (usually not a good sign), I challenged my students to work in groups to compare/contrast themselves with the students at Rawinala. I figured, even if they were terribly calloused and offensive responses (as in: “I have a beautiful face and they are deformed”) it would at least create a teachable moment.  Even with post-excursion fatigue setting in, I was confident I could muster up a lecture about loving all of God’s children, despite their appearances. 

Little did I know that they were about to teach me a lesson. A lesson about the invisible work of the Holy Spirit. Work that had been going on for hours, behind the scenes, in each of their hearts as they watched and listened and soaked in the day. 

We both go to school.

He lives at school, but I live at home.

We both eat rice. (you can laugh, it’s okay)

She knows how to read Braille, but I couldn’t feel the difference in those little dots.

We both have families.

She knows who you are by feeling your face, I can’t do that! (side note: they tried)

We’re both children of God.

He knows where his classroom is by the instrument on the door, I just read the sign.

We’re both loved.

He washes his own dishes, but I don’t know how to do that.

God loves us.

God loves us.

God loves us.

God loves us.

It was on every poster. Every. Single. One. (yes, even "that" group's poster)

And that’s when I knew they got it.

And when I knew that they definitely didn’t need a lecture from me.

They didn’t need to be explicitly taught about how precious each of us is in God’s eyes. They had witnessed firsthand the deformity and hardship and perseverance and joy.  They saw the struggle and saw the victory. They witnessed the giftedness bestowed on students that – at first glance – didn’t look like they’d have much to offer. 

Now, I’d be lying to say that on our return trip, my kids jumped off the bus and wrapped their friends at Rawinala in bear hugs to say hello.  I can’t claim that they were eager – or even willing – to sit side-by-side with one of the Rawinala students as we shared another time of music. 

But as I sat next to a young boy – a boy who grabbed my hand, felt my watch and wedding band and spent the whole song alternating between spinning my ring on my finger, tracing the edges of my watch, and clapping his hand with mine – I knew that this whole thing was, and is, a process. They aren’t ready for a strange child to touch them and pull on their things and feel for their face.  They’re eight.  Some of them nine.

But they’re on their way. They’ve taken the first steps. And I’m excited to see where this journey takes them.

A New Normal

A few weeks ago, my mother-in-law asked me if I had put up a post lately. She wanted to make sure that she hadn't missed anything. 

And that single question confirmed what I'd been dreading for weeks: I'd become the blogger I feared I'd become.


Remember back in September (September 12th to be exact), when I'd tentatively written the first Indonesian blog post? The one where I mused:  


Do I tentatively start what might end up a train-wreck of a blog; one that started with great expectations and intentions, but quickly unravelled into an abyss of nothingness after a few hastily posted ramblings?

Well, here I am. Days shy of reaching the two month mark between posts. 


Quickly hastening down the train tracks leading to that place where expectations of blogger greatness are dashed to pieces by inattentiveness.


And I'm trying to understand why. 


Why I have let two months slip by without narrating - at least in pieces - the life that we're building. The experiences we're having. The joy and peace and contentedness that we're filled with.


I think it's all become too normal.


It's normal for us to look at an empty fridge and quickly order dinner delivered to the apartment in lieu of going to the grocery store or going out to eat.


It's normal for our house to be filled with three or four or more neighbor kids when I get home from work.


It's equally normal for our house to be perfectly silent when I get home from work because the kids have invaded a different house that afternoon.


It's normal for me to stop by the kindy playground during lunch to give kisses to either (or both) of the girls mid-school-day.


It's normal for Brandon to come into my class room and ask my students, "What's my name?" to which they reply "MR. AWESOME!"


It's normal to hop on the back of a neighbors motorbike sidesaddle with my purse, school bag, and oversized tote with that morning's cross-country gear for a ride home. 


It's normal for Ibu Minah to run to the grocery store at 5 PM - when I'm ears deep in valentines and cries of "play with me, Mommy!" - because I forgot the tomatoes for that night's dinner and Brandon's still not home from soccer practice. 

It's normal for Bailey and Boston to shoo Ibu Minah out of the kitchen because they want to wash dishes, put away placemats, and wipe down the kitchen table after dinner. 


In all of this, though, I pray that I have not become so calloused to these "mini" blessings (if there is such a thing) that I forget to be thankful. 


Thankful for the convenience of food delivery via three (possibly more?) different apps. 


For the noise that fills my house and the days when I can sit in silence.  


The fly-by moments when I can fill my girls' love tanks with high-fives and kisses blown down the hallway.  


The man who has made me Mrs. Awesome by association and his passion for all of the students, not just the ones on his roster. 


Friends that forgive my death grip on their shoulder as they dodge potholes, buses and other bikes on the roads that lead home. 


For Ibu Minah and her commitment to our family (and her reluctant acceptance of sub-par help from girls that are growing servant's hearts). 


God has richly blessed our family. Just as his mercies are new every morning, so is the bucket of blessings that he dumps on our lives daily.  


He is so good. Every day. And I live in hopeful expectation of the next blessing He sends our way.  

Here vs. There

This post has been 18 weeks in the making.

In part because it's taken me this long to wrap my mind around all most some of the differences between teaching here at SPH Kemang Village and what I grew up with in Alta Loma.

In part because there are SO many differences - some subtle, some not so much - that I've spent many a walk home debating which to highlight and which to dismiss as insignificant.

In part because I'm afraid that a side-by-side comparison will lend itself to a final judgement about which is right and which is wrong. Which is better or which I prefer. And I don't think that's fair. I won't do that.

SPH is definitely not the Alta Loma School District, but that's okay. I think there would be a huge problem if the whole of ALSD was uprooted and relocated to Jakarta. The needs of the students are different. The requirements of the school (legally speaking) are different. The diversity of the staff and the parental influence and the very location of the school are different. Dramatically different. And different needs require different approaches. As uncomfortable unfamiliar as they may seem at the outset.

It's just different. Not better. Not worse. Just different.

And I'm learning to be okay with it.

Because different isn't always wrong.

With that "rant" out of the way, here are my "top ten" differences:


(1) Hours: We are due on campus by 6:45, and our day isn't over until 3:30. Quick, count the hours...why yes! Those are nearly 9 hour days. I'd like to complain, but before I do . . . 

(2) Specials: Built into our schedules are hour-long blocks where students go to music, art, P.E., Bahasa Indonesia, Mandarin, computer, and library. Most of them twice a week, and taught by a credentialed teacher, which means  - drumroll please - eleven hours a week of prep time that's built into my week. So, while the days are extremely long, they are (relatively) self-contained, in that there isn't a lot of work to take home in the evenings or over the weekend.  Of course, if I haven't managed my time well, or planned too many assignments/tests due on the same day, I bring home a little work, but for the most part, work stays at work and I can be wife and mom at home. 

(3) Wednesdays: I have such a love-hate relationship with this day. Just like in California, students have early dismissal on Wednesdays. Add to that chapel after lunch and two blocks of specials, and that amounts to two hours that I see my students on hump-day. But that's not the best part. The best part is that every Wednesday - Every. Single. Wednesday - we have professional staff development. And I'm not talking a staff meeting that's piled high with announcements, reminders and retirement party committee sign-ups. I'm talking genuine, nose to the grindstone, lets hash this out and WORK kind of PD. On a Wednesday. Sigh. And then staff chapel starts at 3:00 and you won't leave school until 4:00 at the earliest. Love-hate, people. Love-hate.

(4) Extra Duties: They're required. And assigned (more or less). And there is no grace for new teachers (thank you, Mr. Chaix for giving me a free pass during my first year of teaching!). At the start of the year, we all submitted our preferences, but the less demanding jobs filled up quickly and someone, somewhere shuffled our names, dealt the cards, told us our assignments, and that was that. Thankfully, no one was fighting me for a spot with the cross-country team (5:30 runs anyone?), and I didn't mind being assigned to reading month or junior school student council.  It all worked out. God's good like that. 

(5) Workroom: Unlimited copies. 

I'm just going to let that soak in for a minute.

Unlimited.

As in, no limit. 

None.

No code on the copier. 

No sweet talking Jackie into run a few extra copies on one of her miscellaneous codes (shhhh!!!).

No one reminding you that color paper costs nearly twice what white paper does. 

Because colored paper is unlimited, too.

And you can laminate things yourself. Whenever you'd like.

Need color copies? As in colored ink, on white paper? It's not a myth. And you won't have to pay Kinko's to do it. Just email it to Ibu Sundari. 

Speaking of Ibu Sundari. She's amazing. As are the other FOUR people who work in the TU office, willing to help copy, staple, bind, laminate and cut whatever you need. They'll even run copies for you mid-day when you happen to run short of something, or just forget. Send it down with a note and consider it done. 

Merry Christmas to me.

(6) Secretaries: I mentioned Ibu Sundari and her posse. But they are not alone. No, the hallways are full of secretaries and secretaries for secretaries. And I think a few of them have their own secretaries, too.  Okay, so not really, but when coming from a school with TWO secretaries that somehow managed to run a school between themselves, the sheer number of non-teaching staff on our campus is impressive. Granted, the school is pre-kindy through grade 12 and has all of the departments usually reserved for a district office (finance, admissions, IT, etc.), but - case in point - Alta Loma had two technology guys running the entire district. Two of them for ten schools and the district office. Our school - our ONE school - has three ITC staff members, plus a lead teacher who oversees the department. Impressive. 

(7) Proctors: Oh how I miss you. So, so, SO MUCH. To my dear teacher friends, go hug a proctor. Now. I didn't know how much those 15 minutes at recess meant. These days, I supervise my own students during morning break and have lunch duty on Mondays, Wednesdays and Fridays. I'd give my right arm for a proctor on Fridays. Fridays are the days that I don't have any specials until the end of the day, which means I have my students non-stop from 7:15 until 1:05 with only 22.5 minutes (first half of lunch) to myself. Pray for my students on Fridays. 

(8) High Rise Life: When your school is 11 floors tall, and that on top of a ten-floor parking structure, there are bound to be a few things to get used to. Gone are the days, Rebecca, of dismissing our students from our classroom and watching them take five steps from the door and onto the blacktop. No, to get to break time, we have to walk down the hall and down three flights of stairs. Talk about eating up time. It's a constant battle between honoring instructional minutes and honoring a third grade boy's need to RUN. 

Also inherent in a high-rise school is the complete lack of green space. As in my students don't play on grass. Some of them have never played in the dirt. True story: one of our reading passages had to do with a gardener digging in the dirt and they were asked to compare what the gardener found in the soil to what they've found when they've played in the dirt. I had six students write that they couldn't answer the question because they had never had that experience. I cried for them, as I thought fondly of cooking mud pies with my sister in Nanny's backyard.

(9) CPR: Class Parent Representative. A.k.a. room mom on steroids. Highly potent steroids. These ladies are unbelievable. Earlier this term, we wanted to take our students to the zoo for a field trip. Once we got approval from the leadership team, all I had to do was tell my CPR that I needed six moms for the day and she took care of the rest, including snacks for all of the students and special snacks for the moms and teachers. For Thanksgiving and Christmas, parties were planned and all I had to do was show up. And when I forgot to tell students about wearing fall colors to school (instead of uniforms) on the Friday after Thanksgiving, I just sent her a WhatsApp message and she broadcasted the message to all the other parents. Done and done. 

(10) Cleaners: You know the maids at hotels? The ones that somehow know when you are or aren't in your room and stealthily sneak in and out unnoticed? Well, noticed only by the perfection that they leave in their wake, that is. I've come to the conclusion that our cleaning staff were cut from the same cloth. My room is spotless every morning. And by spotless I mean that there isn't a pencil shaving on the floor, the trash can is vacant, and even the desks are void of any hint of dust. Confession: I did spot one of these unicorn-esque cleaners hard at work one afternoon, and I can confirm that they dust the students desks. And not just in the let's-dust-around-things-because-eight-year-olds-won't-notice-the-lint-between-their-pencil-and-eraser kind of dusting that I would do.  I'm talking, they move items left on the table top and carefully replace each one in the pursuit of excellence. 

And there you have it.  

It's different. No doubt about it.

Some for the better, some for the worse.

And I'll leave it to you do decide which is which.