Diamonds in the Dust

My sister had her 18th birthday party. Wow. 18 already? I'm wiping tears of fear and joy away as I wonder what life--no, God--has in store for her. It worries me tremendously and because I am currently working at a regional center, I'm constantly thinking about "life with a person with a developmental disability" in all its legal, emotional, clinical, psychological, sociological, and economical guts and glory. As such, the weight of the responsibility is slowly kicking in. Times like this I wish I had a friend who was in a similar position so we could divulge our innermost heartaches and qualms without feeling self-conscious. That person would understand how it knocks the wind out of you when you least expect it (and when you thought goodness by now you must be used to it) and lingers like a thunderous brass gong ringing tirelessly inside your chest. Who needs no explanation to understand how it feels to be permanently awash in tides of  heightened sensitivity and compassion...all because of this painstaking relationship you have with someone who will forever remain oblivious to all that brews around them. 

Celebrating her 18th birthday this year is an especially joyous occasion....and that is because my sister had a rough year. Actually, our entire little pod of a family had a rough year. After a frustrating, turbulent few months of strange fainting spells that turned out to be mini-strokes, my sister was diagnosed with Moyamoya disease, an extremely rare (and by rare I mean one case in millions rare) progressive condition marked by cloggage in the two of the most important arteries in your body: the ones sending blood to your brain. Strokes, seizures, mental decline, hemorrhages, loss of muscle control and death are all some of the sure consequences for those with moyamoya, and there's really no cure. Revascularization surgery, however, significantly reduces the likelihood of any such problems and indeed, surgery we did do--immediately. and in Korea...which is why I was in the motherland for a bit. 

A couple months ago, my sister's future--our family's future--dimmed significantly and every minute became nervewrecking, but by the grace of God and his strange, miraculous ways, she bounced back and is now doing better. By a last-minute stroke of fate, she didn't have to shave her head, either. Thank heavens. She is obsessed with her locks. My insides are aflutter nonstop now, especially when I think about the devastation that first struck me. I live for my sister, proudly and willingly. I feel a powerful urge to walk in a direction that will better the lives of her and others like her and ensure security for the both of us, so that we will live out the last of our permanently entangled lives together in peace. But news of her initial diagnosis shattered all of that and I literally felt hopeless, unmotivated, and sorry. Sorry that it was her, as opposed to anyone else in the family not already dealing with a multitude of obstacles to a fulfilling existence. Moyamoya is so rare that few medical professionals even knew what it was. No one had answers for us, which frightened us terribly. We anticipated anything and prayed hard. Very hard. It was all the more difficult because there was a whole added layer of complexity and heartbreak that I know isn't understood universally. I had a really hard time connecting with anyone to the level that I needed to feel solaced. And that loneliness, with all the other craptasticness of life and failed friendships sprinkled on top, continues to pang inside of me...but who cares. A light has been cast again on a shadowy future and that is all that counts for now.  Today, June 13th is a day to be remembered as the day that marks yet another challenging year quietly conquered by my family. 

Tears and Cheers. 

1000 words to help you paint a picture

She flips her hair using her neck to admire her own "long, billowing" hair. It never gets past the base of her neck, but she has faith that one day it will indeed be long *somehow*

She loves to have the palms of her hands scratched at night. They are rough and callused because of it. Many many years of it.

She talks in questions. Even when she's writing greeting cards, her punctuation mark of choice is the question mark. Hello? Happy Birthday? I love you? Andrea?

She hates being the last in line when walking in a public space. She is always worming her way up to in front of the rest of the family, working hard exceed our pace while constantly looking back to make sure we're still there.

She is a mic hog. Don't ever go to karaoke with her.

...but she is a great singer. Listen to her sing when you have the chance. Go with her.

She always, always, ALWAYS sees the best in people. Always. She is 1000% blind to others' flaws. It's truly admirable.

She draws people funny, using circles and ovals for each limb, the torso, and the face.

She is infinitely lovable. God truly blessed her with the gift to warm hearts and draw people towards her.

...So when we go to the mall and such, there always seems to be someone from her high school or her church who recognizes her and goes out of their way to say hi.

She is still scared of flushing the toilet.

She thinks cars have feelings. One time she felt sad that my mom's car would spend the night out in the driveway, where it gets "cold and lonely"

She is predictably irritable...most of the time. The other 15% of the time it's a guessing game.

She loves food. She likes to look up cooking videos on Youtube.

She hates watching American TV. Only Korean satellite broadcast channels. Variety shows are her favorite!

She says weird things. Like "your hair looks like an ice cream cone!"

She recently started watching her own weight. It was cute at first and now it is funny and odd. Poor girl.

She will always give her signature temper tantrum for 15 minutes before changing her mind when it's time to go out. We know how to time it now; we just wait for her to come back 'round.

She loves to point it out very loudly (using her finger) when someone farts. "You farted! Gross!" When you're in public, it's mortifying. (Not that it's happened to me...)

She enjoys copying the children's bible, word for word, in neat little lines.

She loves to watch the same show/movie over and over...play the same video game over and over. As a result, there was one time when I had memorized (like, seriously memorized) quite a few movies (i.e. Mulan, Sound of Music, Finding Nemo...)

She likes puppies, but if it's small, she'll smoosh it between her hands and cuddle it SO hard that it'll get annoyed of her.

She loves tofu. More than any other person in the world...I can bet on that.

When she was a a toddler, she put a fat Washington-state sized slug in her mouth thinking it was chocolate. My aunt luckily caught her.

She imitates a lot of the things I do. It's flattering, sisterly, and humbling all at once.

She can't sleep if my mom hasn't come to her bedside to pray together. And she prefers English.

She also took up hook-stitching or whatever it is. She taught me how to do it at least three times and I still don't know how to do it. She feels proud that she knows how to do something I don't know. I like it that way.

She loves to ride the bike. We grew up in a cul-de-sac and currently live in a house with one. She will spend hours and hours just riding back and forth.

She likes to dance in public. She shakes her booty, twiddles her fingers in the air, and does neck isolations. As she likes to call it, she's dancing like an "octopus." It's rather embarrassing.

She spurts out Korean here and there. It's hilarious.

She recently developed the habit of calling you, saying whatever she wants, and then hanging up on you mid-conversation. It happens at least three times a day. For every member of our family.

She likes to lock herself in her room and listen to Celine Dion for hours. And dance, uninterrupted.

She thinks ten $1 bills is worth more than one $10 bill.

She loves to touch soft things, like fur...or my hair.

She is so clever that she thought to hide stuff in her trash can! Where no one can look.

She has an art teacher she adores...often times more than my mother. The art teacher moved to Korea.

She gets teary-eyed thinking about her art teacher.

When I used to get in trouble and have to sit on my knees and keep my hands up as a punishment (yes, Korean style), she would voluntarily join to defend me -->

She makes us proud by doing the simplest of things, like brushing her teeth on her own, or microwaving and cutting her own food. We often laugh about it, but I know the pride is genuine. ''

She isn't a shopaholic, unlike the rest of our family. When we offer to buy her clothes, she says "No, it's okay. I have too many clothes." Looks as if we all have something to learn from her.

She never complains about pain or discomfort. Ever.

...so it makes us even more sad not knowing if she's hiding it to keep us from being alarmed.

She has an impressive (selective) memory. It often reveals how much weight she gives to the smallest of situations, and reminds us how truly valuable each moment is.

She gives us something to work for--a purpose that keeps us grounded day by day. I've made so many mistakes and lost many friends, but she continuously makes me a better person.

She lives in the moment. What seems ephemeral to us means the world to her, one fleeting moment at a time.

She deserves the world and more.

Waves of Longing

To this day, I am utterly shaken by the stillness that exists between us.