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.
