Handicapped

The clanging of metal rang in my ears. It filled the entire room with unceasing noise. There was no finesse—no particular rhythm. When I found the source of the endless clamor, I found my next younger brother sitting cross-legged in the corner behind the upholstered rocking chair. He was the musician. His choice of instrument was a large stainless steel bowl turned upside down on the floor in front of him. His drumsticks were two long wooden spoons. His face furrowed in concentration and delight as he rapidly beat the spoons on the base of the bowl. That face was unlike my face. It was a flat face, with a somewhat flat nose. His eyes were slanted, betraying his extra 21^st chromosome. He continued to beat on the bowl. As a girl of only 4, I did not understand why he thought it was so much fun. Neither did I understand why it brought smiles to my parents' faces. Even at this age, he was bringing smiles to the faces of people around him.

My favorite brother was born with Down's Syndrome. I was so young when he was born that I did not realize he was different than I was. He grew up smack in the middle of a family of seven energetic children. When he was four, he developed a reaction to food that my mom thought was Celiac's Disease. It meant that when he ate anything that was made from wheat flour, he would become violently ill. He faced the upheaval of unexpected nausea and changing diet with a sense of normalcy that rivaled those of us faced with much smaller problems. While I, who had no physical issues whatsoever, complained that my older brothers left me sitting in the house while they roamed the woods; he merely smiled, then sat on the wooden stairs and rocked a doll while I pretended to play church.

His speech was thick and difficult to understand. By age four, my parents enrolled him in speech therapy. In years to come, my mom would say jokingly, “We enrolled him in speech therapy because we couldn't get him to talk. Now we can't get him to shut up.” As he learned to speak more clearly, he would confront anyone. There was no stranger to his verbal attack of cheerfulness and friendliness. He would corner an adult and barrage him with questions, oblivious to the fact that the adult was reacting like a fish out of water. The adult would respond, “I'm sorry, what did you say?” Durrel would repeat the question only to be met with an even more nervous, confused response. Eventually the adult would mumble, “Yeah, mm-hmm,” and retract himself from the conversation as though a heavy weight had just been lifted from his shoulders. Durrel would simply move on to his next target. While Durrel met every person with friendliness, I tended toward pessimism even at a young age. When friends rejected me, I retreated to my mother, my high-pitched whine rivaling a siren. Eventually, I found that if I used his approach to people, I made friends. Friendly people are so much more welcoming than pessimists. Instead of crying when people treated me wrong, I moved on and found that people who really cared about me existed and were worth the energy of friendship more than the ones who slunk away at the earliest opportunity.

The percussion session in our living room was just the beginning of endless energy and passion. Whatever Durrel set his mind to was done with gusto and flair. Even more so if people were watching him perform. Whether a dancing monkey or a clown or an adorable little boy who could twist himself up like a pretzel, Durrel could be the center of attention without trying. One evening, I strained and stretched in attempt to reach my feet up behind my head. Durrel could do it, so why couldn't I?

In his upper teenage years, he developed an interest in Southern Gospel music. Whenever I visited home, he animatedly told me about the latest band he was interested in. He would coax me into watching his favorite Ernie Hause and Signature Sound DVD. As I watched, I would make a mental list of all the things I disliked about the style of music. While he watched, he stood upright, hand to his mouth, belting out the lowest possible note he could reach. Every now and then, he would blend in perfect harmony with those singing. He was the star of his very own American Idol. His stage was the living room. His audience none other than his big sister. Suddenly, I became aware of the catchy beat and the joyfulness of the songs. It was like he was back behind that old battered rocking chair once again. The pure joy of music reflected in his eyes, forgotten the frustrations of trying to meet expectations. And I envied him.

I went to serve a year of voluntary service, when I was eighteen, at a home for those with intellectual and physical disabilities. The residents I met at this home often unnerved others. I, however, saw individuals with unique personalities. I found humor in the stubbornness of Cheri, who would refuse to swallow her medication night after night, even though she knew she had to swallow in order to be able to eat her dinner. On numerous occasions, I blushed in mortification and then laughed until I cried when I realized that one of the residents had escaped the shower when I was not paying attention, and had attempted to streak down the main hall of the home. I received slobbery kisses on my cheek and understood that it was a sign of safety and comfort. Each one of these individuals that I met wormed their way into my heart. I do not think that would have happened without Durrel. He helped to shape me into the human being that I am. While I served at this home, he came to spend a week with me. By the end of the week, he knew the names of most of my friends as well as quite a few birthdays.

I moved on to my freshman year of college, and my parents and Durrel came to visit. My family is one of those half-way physically affectionate families. We hug, but then find something to talk about quickly so the obvious affection does not become uncomfortable. I was somewhat surprised then at this visit, when Durrel wrapped me in a giant bear hug and kissed me on the cheek. For several seconds, I was the blithering idiot who nervously giggled then realized that it felt good to be loved with that sort of freedom. It was a defining point in my relationship with him.

During my sophomore year, he again came to visit me during finals week. I gave him nearly free reign to meet whomever he chose. He was fascinated by all of the exams I was taking and proceeded to administer some of his own “exams” in the dining hall. He accosted my choir conductor and somehow convinced him to sit down and take his exam. One of my friends sat and wrote freestyle for ten minutes until Durrel was satisfied the exam was complete. He required everyone to write down their name and address which helped him in his letter writing process.

He has the reading level of a child partway through first grade. He knows his alphabet but does not know how to write out complete thoughts on his own. He will copy something that another has written or simply write random combinations of letters in order to make a letter complete. I received a letter from him last Christmas. While much of it was nonsensical, other parts of it consisted of names and addresses from his address book. Each letter was painstakingly traced numerous times. As I ran my hand over the paper, I felt the ridges that had been created from the pressure that he placed on the pen as it traced each section of the letter. The bold black ink stood out from the whiteness of the paper, and I realized that what I held in my hand was not only a labor of love. It was a work of art. It was more beautiful to me than an expected Christmas card with warm wishes for a happy holiday. It was the essence of his character on paper. It was not a letter of unintelligible scrawls, rather a time-laden project which he finished to make me happy. I had not even gotten him a card.

On the surface, he seems like the kind of person who takes things in stride. Our family was working through the divorce of one of my brothers. Things were difficult for everyone as we attempted to find each of our roles within the situation. One day, Mom heard him talking while he was in the restroom. She listened closely and realized that he was praying, “I pray for my brother that you would be with him. In Jesus Name, Amen.” This same sensitive spirit came out at the recent wedding of a friend. He wanted to give a speech at the open mic and nothing would deter him. My sister and I went along to the mic with him. He talked for several minutes while we listened, realizing that not everyone in the audience could make sense out of what he was saying. What was understood was loud and clear: “Josh, you've been a good friend. And you've made a good decision today to get married.” He deserved a standing ovation; I have never been quite so proud of him in my life.

Since he was next younger than I, he suffered untold amounts of teasing and pesting from me. Despite my persistent teasing, he would always love me. He had dreams of doing all the things that the rest of us siblings were able to do. After my year of voluntary service, he talked for years about going to work at the home as a staff. He now talks about moving to Pennsylvania to live with me. Maybe one day that will come to pass. Through the disappointments he has faced, the rejection of people to his face, and the unfulfilled dreams, he still moves forward. He finds new dreams. He forgives and loves as though he has a sense of what people really need despite their protests. He embodies strength and stability. He is my hero.

I love music and am training to be a professional soloist and voice teacher. I sing beautiful music every day. But I envy the abandon with which he sings. He does not worry about the audience. He just sings and every part of the room lights up when he does. As I listen to the slightly off-pitch growl of his voice, the goosebumps that skitter across my arms make me realize that what I may have in talent, I sometimes lack in soul. Durrel—he has soul to the very tips of his big toes. When I sing today, I think about that little red-headed boy, eyes full of excitement, rat-a-tapping away on that stainless steel bowl. I imagine him belting out his favorite Gospel hymn. And I smile. I realize that I am the handicapped one. I am often handicapped by many different kinds of fear. But if I allow myself to be freed by the same passion he possesses, then we both have the chance to live as the whole individuals we are meant to be.

 

Note: This post was written as an assignment for my WRT 205 class. It is a tribute to my brother, whom I would not trade for the world!

Since it has been so long since I had written a decent post, I decided to give a brief run-down of the highlights of Junior year.  Here goes.  In somewhat chronological order. :)

1.  Labor Day Weekend

Spent in NYC.  The memories.  Who doesn't decide to go into Manhattan at 10 p.m.? 

2.  Cendrillon--my first ever opera performance

And what a wonderful cast to experience it with.  We even had our own unique family "dance" to kick off each performance.

An additional blessing was the overwhelming amount of support that was shown on my behalf.  Family and friends came quite a distance to see me perform.  I'll never know whether they were truly supporting me or just wanted a chance to see the real "witch" come out.  :)

3.  Finals Celebration

A trip to OH to celebrate the end of Fall 2011.  Hands down favorite memory was caroling in the snow in Cleveland with these delightful people.  It still causes warm fuzzies.

 4.  Bluebeard's Waiting Room

Wearing a shockingly large wig for my second opera performance with this cast of women.  Priceless.  Never mind the fact that they had to put up with my pretentious character, they also had to dress me, attach my wig and jewelry, and do my hair and makeup.  What fun!  What fun!

Yes, as a matter of fact, there was that much room under the hips.  :)

5.  Spring Break--NYC

Student rushing Don Giovanni at the Met!  Wonderful performance with two dear friends!



Brooklyn Bridge at night with those same friends and my bestest friend ever, My sister.

6.  Junior Recital 

Sadly, I do not have any pictures and the videos take a very long time to upload.  However, it was a highlight.  :)

Although I can hardly believe it, I am now a senior.  The next year looks exciting as well.  I will attempt to keep updated a little more regularly.  It's time to think Graduate Schools.  Yay!

Hear Me, O God, Nor Hide Thy Face

Isaac Watts

Hear me, O God, nor hide thy face but answer, lest I die;

Hast thou not built a throne of grace to hear when sinners cry?

My days are wasted like the smoke dissolving in the air

My strength is dried, my heart is broke and sinking in despair.

My spirits flag like with'ring grass burnt with excessive heat;

In secret groans my minutes pass and I forget to eat.

But thou forever art the same, O my eternal God!

Ages to come shall know thy name and spread they works abroad.

Thou wilt arise and show thy face, nor will my Lord delay

Beyond th' appointed hour of grace, that long expected day.

He hears his saints, he knows their cry, and by mysterious ways

Redeems the pris'ners doomed to die and fills their tongues with praise.

This is one of the pieces that Oasis Chorale will be performing this summer. The arrangement is by Alice Parker which means it is pretty near sheer genius.  We will be singing it in rough, early-American style.  I think it will end up being a fun piece to perform and definitely a new sound for most audiences.  :)  However, what really struck me was the text of this piece.  I find that it is the cry of my heart.

The feeling of emptiness—we all know it. That hopeless, energy-less feeling of worthlessness. Recognizing the depths of our sin and feeling that there will never be enough grace to cover it all. We are hungry. We are broken beyond our own repair. This song is the desperate plea for mercy and grace in light of the our sin-ridden beings. It is seeing ourselves in light of who we are. Defiled. Distorted. Dysfunctional. Dirty. (There sure are a lot of “d” words to describe the broken us.) Proud. Broken. Depressed. Then it calls upon the Truth—who God is. It is the sinner, in desperation, begging God to be who he says he is. Asking him to show up and redeem the despicable piece of dirt that we are. It is believing that He can and will redeem us to the point that our hearts are completely transformed and our mouths are filled with praise and joy. Believing that he will take us from the worst to the best. This is what we long for. And we hope with all our beings in these moments of despair in what we know to be true. We hang on with every remaining ounce of strength there is because it is our ONLY hope. And when it happens, it is a work of the supernatural. We do not understand how redemption happens. We only know that we have been redeemed. We are no longer facing death. We are free.

When all is stripped away...

When all is stripped away, who am I?

One of my favorite hymns, “Just as I Am,” contains this verse:

“Just as I am, Thy love unknown has broken every barrier down.

Now to be Thine, Yea, Thine alone, O Lamb of God, I come. I come.”

We all have barriers that alienate us. They help us to keep our lives under tight lock and key—controlled just enough that we keep people fooled. The scary part is that, too often, we fool ourselves. We justify the barriers. Of course, there’s the blatant barrier of sin, separating us from the Father. But what of the more subtle barriers—securities… identity…personal bubbles?

I, for one, prefer my safe little world. (Strangely enough, this seems to worsen as I grow older.) I like things the way I like them. I don’t appreciate my moorings being shaken, much less ripped out from under me. When I control my world, I know where I’m headed. I know who I am. I feel confident knowing that things are going according to plan. HOWEVER, I’m living a delusion. My little controlled world takes place in a bubble—a bubble that is threatened to burst at any moment. It feels safe to me, because I’m not aware that it is a very thin lining that is the foundation on which I build my beliefs. The reality, is that at any moment something sharp about my person may very well puncture that bubble, and it will dissolve completely. The other part of reality is that God may choose to remove my safe little bubble. Neither of these options feels safe; both tend to induce panic and other such emotions. So rather than dealing with reality, I often tend to live my pretend life, inside my bubble where I manage to convince 99% of myself that no one can hurt me.

The problem with this is: God also has a difficult time getting to my heart through the bubble. Knowing His love can be virtually impossible, since I’m so consumed with protecting my bubble that I don’t see His love in the various forms it is given to me. I don’t recognize the good things He has given me as from Him. Instead, when something good comes along, I desperately attempt to grasp it to myself within my bubble. I hold on for dear life, afraid of how my life will change if I let it go. (And I’m completely unaware of how ridiculous this appears!)

But what if all these things are stripped away? Then what? Who am I without the bubble? Who am I without the gifts, the good things that I am afraid to release? What does it really look like to just “let it go,” knowing that in the freefall through the bottom of the bubble, God will be present. Will He be enough? Will I trust Him to be enough?

What I do know, is that “All is vanity.” My pride, my self-sufficiency will only last so long. I need Jesus. My music is nothing. My relationships are nothing. My reputation is nothing. Nothing without the transforming love of a Father who wants to be with me. Who says, “Come unto me, and I will give you rest…for I am meek and lowly in heart and ye shall find REST unto your soul.”

Whoa!!! Help me...

...I'm on the rollercoaster called my life!

And this craziness, the ups and the downs, the frantic screaming--wondering if I'll really survive the next corkscrew--makes me wonder: What, exactly, is really worth it?

There are those few people I have observed who seem to be ranking quite close to Wonderwoman--at least what they managed to micromanage and achieve through that process seem to have happened through some superpower or another.

I, on the other hand, am rapidly coming to realize that, just as rollercoasters seem to be getting scarier every time I ride them, life seems to become just as scary. And while I may have fancied myself some sort of Menno-Wonderwoman, the reality is that I am a frail human being with definite limits. If I try to defy these limits, my screams seem to become less squeals of joy and mor the blood-curdling shrieks of terror.

In direct contrast to that disturbing mental image, I stood in a pre-Christmas Eve service. The lights wer dimmed as choir and congregation joined in singing "Silent night, holy night..." unaccompanied. It was as though a holy hush settled on my soul. Tears sprang unbidden to my eys. I realized that, in the depths of my soul, I crave quietness. And I crave the connection with my Father that I have been missing. I long for time to sit and be still, knowing He will meet me there.

I long for peace in the middle of the storm. I want to know that at the end of this crazy rollercoaster, I will jump up and down with elation, convinced to the very tip of my big toe that it has been worth it!

September blahs sprinkled with fairy dust

Being a teacher, I am incredibly familiar with the February doldrums. I don't think I have ever before experienced the ones that come along in September though until now. I'm sure that there are myriads of factors that play into this "doldrum effect." These might include: traveling to Poland this summer, not enough down time over the summer to process life, returning to the States two days before school started.

Yes, yes. I was told I was insane. I didn't really need to be told that. I had figured it out already! (This post is not about my trip to Poland, although it was fantastic and I'm convinced God had me there for a reason!) However, I fought the usual uprisings of panic as I surveyed all that lay ahead of me. Apparently this was for some good reason!

It is over three weeks into the teaching school year and about the same into first semester of college. Last year, I was flying high right now. I couldn't believe the gift I had been given of going back to college. Music Theory was amazing! I was religiously practicing for my voice lessons. I was pulling A's and proud of it! In contrast, I feel the doldrums this year. But they are very special doldrums! :)

The last two days in particular have been two of the worst I have faced in quite a while! Yesterday, I dumped my lunch of Ramen noodles all over the library floor at SMS--before I had so much as taken ONE bite! (Fairy dust--the wonderful teacher's aide made me some more noodles so I didn't have to go without lunch, and the secretary helped me clean up my mess). Last evening I waited anxiously to head to college today. Today was the day I was supposed to get my FAFSA refund, which would enable me to pay some overdue bills, and in general to relax a little. However, I almost overslept this morning. I grabbed a quick breakfast as I ran out the door, and threw an apple in my bookbag for lunch. I left in good time, but still managed to hit worse-than-usual traffic and still arrived five minutes late for class.

After Theory III class (Fairy dust--I'm over halfway finished with Theory and Aurals.), I headed directly to get my refund check. I confidently announced to the lady at the Bursar's office that I was here to pick up my refund. My confidence turned into a nagging feeling in my stomach as she continued to study her computer screen instead of jumping up to get me my treasured check. She explained to me that since my credits are registered as 11.5 (part-time) I needed to go to the Financial Aid office and they needed to simply sign off before she could release the check. It was a simply solution, she assured me! I could come right back to her and she would hand me my check.

However, the Financial Aid office lady didn't find it so simple. (Fairy dust--this lady was amazing...a real god-send!) She kindly took me back to her office (she noticed I was about to melt into a puddle of tears on the spot), and explained that since my schedule had gotten messed up, and I now had only part-time credit level, my coveted grants were going to be cut. (Fairy dust--because I'm part-time, I get a parking permit for the good parking lot!) Of course, my student loans would gladly give me all I need, but the good stuff would be taken away! I did my best to pay attention through the thin veil of tears that clouded my vision. (Fairy dust--I felt this small reassurance that God was in control...very small, but present none-the-less.)

Not to worry, I will have all the Financial Aid I need, but I found myself frustrated with life and how little bad things can happen and just completely muck up your plans! I found myself telling God, "OK, I get it! I'm not big enough to take care of myself, even financially. I can't control everything. You've got to be the One in control!"

The biggest speck of Fairy Dust is that I also received a scholarship. It is a scholarship that is usually given to a music education major, but because those involved know of my investment in teaching outside of college, it was given to me. I am also runner-up for most improved rising sophmore vocalist (or something).

This whole "vent" is partly a way for me to relax right now. I'm wound so tightly that I'm a little afraid of snapping! (I also took my first Aurals Dictation Quiz of the semester...and I still hate that pressure!) Instead of working on homework, I chose to write all of this out. Why? I think to remind myself that God is good. In the middle of the doldrums, He sends little speckly fairy dust to remind me that He is present, and that He cares about me. And my Ramen noodles!

more from Isaiah

I am very slowly working my way through the book of Isaiah. I love the promises that I find there. I don't love so much the opposing sides of the picture of God that are displayed. Yes, I admit I struggle to resolve the image of a God who is loving and compassionate vs. a God who destroys people and cities because they do not listen to Him. It is difficult to wrap my feeble few "grey cells" (to borrow from Agathe Christie) around the idea that He is able to be both. He is love. He is justice. They cannot be separated from Him. He simply IS both of them.

And yet, I find myself intrigued by the idea. God is the perfect Balance. Everything is combined in and through Him. As fallen human beings, we don't like balance. We want ANSWERS! We want CUT AND DRIED! We want to be able to KNOW that we are RIGHT, and that we are the ONLY ones who are right! We want to win the debate!

I get it that there are absolutes. There is right and wrong. However, within the side of right, we as Christians get all muddled up. We live like we are on a teeter-totter, frantically running from side to side in an attempt to balance it out all by ourselves. But each time we run to the other side, the result is a resounding thud as we hit the ground.

Allow me to use an illustration:

As a young Christian, I was convinced that the way to be a good Christian (is there such a thing?) was to read my Bible and pray every day. This was what I heard preached and taught. If you want to follow Christ, you must read your Bible. You must pray. So, I attempted to read my Bible. I knelt every morning by my bed to spend time in prayer, only to find myself falling asleep. (not because prayer was boring, but the lack of sleep) I questioned, "Does this mean I'm not a good Christian? No matter how hard I try, it's not working." No matter how much I read my Bible, I found myself having the same issues day in and day out.

Somewhere along the line I threw it away. Well, in my defense, I tried to read my Bible every now and then. I did spend time praying to Jesus as I walked through my day. But this whole idea of reading my Bible for a half hour in the wee hours of the morning began to seem ludicrous. How could that possibly save me, or even make me a good Christian? I decided that it is about my relationship with Jesus. It is about speaking to Him and listening to Him. It's about calling Him my best friend! It's not about what I am doing! It's about who I am being.

Slowly, but surely, I feel God calling me to a balance in this issue. Because I was angry that the one end of the teeter-totter simply thudded to the ground, I ran completely to the other end. It was a jolt then to realize that I thudded just as hard on the other end. I was reacting, and living in reaction to something rarely brings about the desired response. And so, I now am attempting to come to a place where I see the Truth in both sides. I am attempting to stand with one leg on either side, striving to keep the board in the air instead of crashing down. The tilting becomes not so great, and the frantic rushing does not happen quite so often.

This is only one example. I propose that the majority of our lives needs to be spent finding a balance...living in the so-called tension between two sides of an issue. Because we are not perfect, we are going to rush frantically at times. We are going to react only to face the jolting thud of our teeter-totter hitting the ground once again. But we need to allow ourselves to be called toward the middle and embracing Truth for what, and, more importantly, WHO It is. We need find our confidence not in our answers, but in a God who really does know all the answers.

One day, it will all make sense. Until then, "I press toward the mark..."