Rex

by Cathleen Lewis

  In spite of how far Rex had come, he still never had playdates, hadn’t shown a desire to connect to his peers. They were open to him like Drew at the amusement park. They sought him out at school and elsewhere, but he showed no interest. Why? I wondered. Was it because kids his own age didn’t have the patience it took to sustain communication with him? And if so, would this boy, who spoke the same musical language, be just the one to break that barrier? I knew that Nathan was being homeschooled so he could work on his piano during the day. “Where do you all live?” I asked his mother.

  Mother and son exchanged amused looks. “We just rented out our home for the summer because we’re going to be traveling. But for this month [June], while we’re still here, we’ve moved into a condo on the beach, just north of Pepperdine.”

  If I’d been looking to God for some sort of sign, encouraging me, that would have been it. It turned out they were living just a couple of doors down in our very own condominium! Wow! Yet another wink from God!

  Rex was a little tired from school on the day Nathan was coming to play, so I hoped he would allow the musical interchange I had set up. Facilitating Rex’s interaction with another child was harder than facilitating a performance. And yet, Nathan was a pianist and a bright, energetic boy, who I hoped wouldn’t be intimidated if my son was less than enthusiastic with their time together. He was beaming as he walked through the door, excited to see Rex play up close and personal and excited to play himself. Nathan said he’d like to hear Rex first. The older boy listened with true appreciation to my son’s new Debussy “Arabesque.” Then when he took his turn, he spoke to Rex directly, instead of to me, as was often the case. “Rex, I’d like to play you the Chopin Etude I’ve been working on.”

  The piece was nicknamed the “Torrent,” and it was indeed a torrential flooding of notes he played with flamboyance and virtuosity, which made my son squeal and jump out of his chair. He had never heard a peer play with such prodigious skill! Nathan then played a Chopin Impromptu and got the same reaction.

  Seeing Rex’s interest, I had the longing again that he and Nathan should collaborate on a piece of music and work together. Remembering this boy had seemed open to just that, I tried following through. “Nathan, how would you like to study a piece of music that you and Rex could play together sometime?”

  “Sure,” he said without hesitation.

  “You know, Rex learns pieces very quickly. If you’d like to see, maybe you could teach him part of the Chopin Impromptu you just played.”

  “Okay,” Nathan said, although I suspect he doubted what he would get back. He played a melodic part, and Rex played it back instantly, to the boy’s fascination. “Amazing,” he said. Wanting to keep the interaction going, I suggested Rex play back the same part in another key, changing it from A-Flat to D.

  “He can do that?” Nathan asked, incredulous.

  “I think he can,” I said, but in my pride as his mother, I’d spoken for my son.

  Rex spoke for himself now. “No,” he said, refusing.

  I wouldn’t give up, so I countered with an easier key change, speaking to him and not around him, like I berated others for doing. “Well, how about B-Flat, then, sweetheart? I think you can do that, Rex, can’t you?” I coaxed.

  Once again he had his own ideas, exerting his personality, his will. This time it was to pick the harder challenge, and he said, “D. I’ll play it in D.” It was an astounding transposition that left Nathan smiling, saying he wished he could have some of Rex’s brain. But just as my heart was swelling with visions of these two boys as friends, Rex deflated my hopes, saying, “Nathan has to go now.”

  I knew that meant Rex had suddenly reached his limit. That’s why he didn’t have playdates. But I tried to deflect my son’s meaning by saying, “No, sweetheart, I don’t think he has to go yet, or do you, Nathan?”

  “Yes, Nathan has to go,” Rex repeated, his own independence suddenly becoming my foil.

  The boy looked taken aback for a moment, since he was thoroughly enjoying his time playing music with Rex, but as he looked at his watch, he realized he’d been here past the time he’d told his mother, and said with a chuckle, “Well, actually, I do have to leave. But that was really fun, Rex.”

  The door shut to the sound of Rex playing what sounded like a nocturne, knowing he was improvising in that haunting, melancholic style. He seemed content but far away, removed from Nathan, removed from me, in that place of his own deep within, where only music could reach. “Rex, did you have fun with Nathan?” I asked, trying to pull him back, wanting him with me, not in some other world I couldn’t access.

  He answered me only with notes. They were beautiful and sad, wistfully fluttering, suspended in space, longing for completion before spiraling downward. My heart ached with a longing of my own—to reach my child. “Rex, did you have fun with Nathan?” I asked again, more urgently, hoping, yearning. But we were in separate worlds.

  We’d come so far together. His personality had begun emerging, and he was asserting himself. That was good, but I didn’t want it to keep him separate. I wanted it to connect him to the world. Yet what I had yearned for all these years remained elusive. Would he ever become truly interactive, needing and desiring the company and companionship of a peer? Derek’s example had given me hope. If he could get there with even greater cognitive limitations than Rex, so could my son. And so I had pushed forward with Nathan. But right when it looked like it would happen, Rex shut down. My letdown was intense, all the more so because Rex seemed to be able to just fly away on a nocturne and leave me alone in my frustration. And yet, I couldn’t be all alone. That was what faith was all about. God had access to my son even deep within the music. And He had to be with me now, even though it didn’t seem like it. Even if it seemed He was as deaf to me as my son was just then.

  The next day, Rex and I went to the beach. And it was there, with the infinite horizon staring me in the face, that my son finally answered my question. “Mom, that was fun playing piano with Nathan!” In Rex’s time. Oh, you of little faith! Why do you doubt? Everything in his life happened in his own time, that’s the way my son worked. I couldn’t push him past what he was ready for himself. Why hadn’t I learned it yet? Waiting on God meant waiting on Rex. He dipped his feet into the surf, as he’d done with Derek, and said, “I will tell Nathan the water in the ocean is really cold!”

  “You do that, sweetheart; you do that!” I said, my voice breaking with emotion.

  “Nathan will come knocking on our door, and I will say, ‘Come in Nathan,’ and I will tell him.”

  YES! I cried to myself.

  Two days later, there was a knock on the door. “Come in, Nathan!” Rex shouted, with excitement, fulfilling his own prophecy. The door opened.

  “Hi, Rex. How are you?” Nathan asked politely, walking in.

  “I’m fine. And yourself ?” Rex answered.

  “I’m good. I’ve been thinking about a piece we could work on together, Rex. There are some Beethoven concertos that have different piano parts we could do,” he said.

  Just as I was about to jump in and say, “Good idea,” effectively exerting my own desires on my son, I stopped myself, practically biting my lip, remembering, In Rex’s time. Seconds can be an eternity when you’re waiting for something life-altering to happen.

  A beat. Two. Three. Then, enter a new measure altogether. “Nathan, I’d like to play a Beethoven concerto!”

  YES! I cried again, silently.

  I sat myself down in the living room, leaving the two boys to play together without Mom interfering. That’s the way it would be. Facilitator, not interposer. After playing new pieces for each other, they had begun playing back and forth on the piano in a sort of musical conversation. Rex called it “question and answer,” a musical game he’d learned at Pepperdine, where one would play a musical phrase in the style of a certain composer that would elicit an “answer” back, with each participant having to think quickly and creatively to kee
p the interaction going. This was Rex’s language. But Nathan had mastered the tongue as well, and both boys were verbose. And both were having fun.

  “How about some Russian, Rex? This is a Stravinsky style,” Nathan said.

  Rex smiled. He loved Russian. Tchaikovsky, Rachmaninoff. I knew he’d have much to say.

  As I watched the two boys talking back and forth—never at a loss for words in Russian or Mozart or Chopin—I didn’t know what the future held. Would Nathan become a friend? Maybe. But if not, there would be someone else, because I knew my son was reaching out, using music as a foothold as he’d always done. The door that had opened to let Nathan come in was just one more door opening in our lives. I gave thanks for it, knowing just how big it was, and I knew that if I would just trust, there would be many more to come. Trusting God meant trusting Rex and following his lead. I could provide him with opportunities as I always had, but I needed to lighten my touch and allow him to move forward at his own pace, in his own time.

  Rex laughed as he shot back a Beethoven answer with such confidence and joy that it made Nathan laugh as well. As the notes filled the air, I had no doubt the future would be filled with work, hard work . . . for my son and for me. It was a complex road we were traveling. With his body and mind as the meeting place of such extremes of genius and disability, how could it be otherwise? And yet there in the mix of laughter and music I suddenly saw the truth unveiled. What I’d caught in glimpses throughout Rex’s life—snippets, as God kept winking at me, sustaining me with just enough grace—was suddenly stark naked. The parts had become whole. And it really wasn’t complicated at all; in fact it was beautiful and awe-inspiring in its simplicity. I’d write it on a Post-it to remind myself in the future, in a month or a year when I might forget . . . or doubt . . . or be buried once again by circumstance.

  The whole fact is—Rex loves his life, every second, minute, hour, month, year. He’s like a living revelation, the unlikely embodiment of grace—a touch of the Divine. My son knows that it is a wonderful life! And through my faith and love for a little boy, so do I.

  Reflections

  The other day the bumps became words, and the words had meaning, and the meaning was . . stories! Rex was reading Braille! Almost five years after his mother gave up on his fingers ever being able to make sense of those hated “bumps on a page,” Rex was showing her once again to never say never where he was concerned. Or where God was concerned.

  Later that night, I was sitting in the living room, thinking about Rex and Braille and the mystery of life and grace. The sliding doors to the terrace were fully open and I could almost touch the heady smell of salt and ocean in the humid night air. Mixed with the scent of the jasmine bushes, which grew in abundance directly below the terrace window, the evening air became an intoxicating perfume enveloping my senses. Add to that, the gentle waves rhythmically caressing my mind along with the shore, and I felt myself drifting into a peaceful trance. Beyond the ocean, all was silent, with Rex safely tucked in his bed, sleeping peacefully. Suddenly, breaking the silence, snapping me instantly from my sensory trance, I heard giggles coming from his bedroom. By the time I got to his bedside to check on him, he was chuckling to himself, apparently having a good time in his dreams. He has started that of late, sometimes even during the waking hours, he drifts off into his own thoughts, laughing. Sometimes it’s giggles, other times it’s a deeper, more sustained sound, and once in a while it escalates to include laughter in his body movements as well as sound. I’ve asked him on different occasions, “What’s so funny, Rex”? He will invariably answer, “Mom, I’m not sure.” Personally I think the laughter is his punctuation to all his miraculous breakthroughs, and how he keeps proving doubters wrong (even when it’s Mom). So you really thought I’d never read Braille, Mom? But then, the laughter is even more than that. It demonstrates how joy is at the very core of his being. It would have to be to inhabit his sleep that way, and to seep into his subconscious wakefulness. Listening to that sound, and admittedly joining him in laughter on many occasions, just “for the fun of it,” has made me realize that there needs to be an afterward to his story. So here are a few more thoughts.

  The basics are simple. Rex is joy and I want what he has. But the process is not. So let’s go back in time.

  Just like Rex was living in a dark, lonely world before he found his voice through music, so I was living in the dark before I found God, or rather, before He found me. Of course, I didn’t know I was in the dark, since my world was filled with motion, and I was living in the City of Lights—Paris. How could there possibly be darkness there in the exciting world of fashion where I worked as a model or in a career in high finance? And yet, in the stillness, when the movement would stop for a moment, there was a vague feeling of emptiness that would seep in, in spite of all the “things” in that world. Back then, I would “cure” it by making myself busier.

  I didn’t know back then that I was living with a hole in my heart that simply couldn’t be filled with things. And I certainly didn’t know what it would take to fill that hole. Before Rex, I never could have dreamed him up. But that’s what God specializes in—the outrageous, the unexpected, and the knock ’em down, out-of-this world unbelievable! Not to mention our own unspoken need . . . or unacknowledged need.

  As I look back at the portrait of the young woman I was back then, I see how firmly I was grasping the wheel of my life. I was willful and stubborn, sure that I knew what I wanted and what was best, conditioned by my environment. I was trying to measure up, and uncertainty wasn’t a trait admired at Stanford, nor was lack of conviction the stuff of a successful currency trader. I was enmeshed in the standards of the world around me, and bowing to ideals and exigencies of daily life.

  Then came Rex! A steely bond of love gripped my heart when I looked into my baby’s eyes. Unshakeable, unbreakable, beyond any emotion I’d ever felt! Little did I know, those beautifully innocent baby blues were the eyes of the perfect storm that would bring down the world as I knew it. Conditioning, expectations, standards. Rex’s whole being was about uncertainty and lack of guarantee. I could have no expectations . . . not even the most basic for the child I loved so intensely! Devastated by grief and without any point of reference from my life experience, Rex’s birth plunged me into confusion, despair, and utter hopelessness. He was a hurricane wrapped in a baby blanket, smashing the foundation of my existence, a tornado pushing me this way and that, leaving me spinning in unknown space, clinging only to my baby boy, hanging on for our lives. The only thing I knew back then was that I couldn’t let go of my child. I was his mother, and that bond of love seemed the only absolute I could trust. And his daily existence was suffering, upset, and sensitivity. He couldn’t live in the world as it was . . . or as he was. And it was living the picture of my two-year-old child, the tortured prisoner of his own dysfunctional body, that brought me to my knees and led me to God. Little did I know back then that what I was seeking from God went far beyond my son and my life since his birth. But God is bigger than our own imagination and He is a very clever Creator indeed!

  I hadn’t grown up in the church, so hearing words of God’s redemptive grace sounded like a foreign language at first, especially given what I was living with Rex. And so, it was all the more surprising when I found my heart changing, even as my son’s condition didn’t change. I had attended church for a whole year, praying for nothing but healing for Rex. For him to walk, and talk. Yet, without any of those prayers for physical healing of the son being answered, God had begun to heal the mother. Me! He had begun to instill faith in my heart, which was far beyond my own understanding. It was like the words of hope from the Bible bypassed my mind, refuted the evidence in front of my eyes, and took root directly in my heart. How could I have hope in my heart when our plight seemed utterly without hope? The answer is I couldn’t. Not without faith. And so, for me that was the first miracle that touched our lives, a good year before the physical miracles began to manifest in Rex’s walkin
g and speaking and piano gift. By that miracle of faith that God was growing in me I came to know He did have a plan for Rex’s life . . . and mine. I see in retrospect that plan had to begin with me and my own change of heart. Maybe He had no use for me as I had been. Maybe I had no use for me as I had been!

  In the years since that first seedling of faith was laid in my heart, it hasn’t exactly been a quiet and even-keeled “walk of faith.” It’s been more like a tug-of-war with God—pitching this way and that, digging in my heels, or loosening my grasp because His grasp on me was too constraining, and the way He was leading was too frightening!

  How many times did I forget reverence and just scream at Him to listen to me! Was He uncaring . . . or just plain deaf ? Or . . . did He hear beyond my words, beyond my own momentary agenda or concern to the big picture of our lives? Living in a constant state of uncertainty for so long grows new trusting muscles, helping to pry loose old agendas and conditioning. You either let go and trust or your body and mind fall apart over time. One thing is sure—God left Rex and me in the mucky mess (miry pit) for an interminably long time. (Sometimes it even seems we’re back there.) But in all the erratic life and faith swings that I’ve encountered during the course of Rex’s life, I’ve come to understand that God has allowed me to maintain a thread of hope through it all, without which all would have been lost. And coming out the other side of pain and darkness has refined my vision so that even a dim light shines like a jewel.

  So much of Rex’s life simply can’t be explained by books or reason. I used to try to analyze, quantify, and assess ramifications of things that were beyond explanation and beyond my control. The result was a mind in turmoil—I was pulling away from God. Each time that would happen, when I looked beyond God for answers, I would come back blank. Blank and confused and upset.

  Then I would hear Rex’s piano music, and it would take my breath away . . . and take my mind out of the equation. I would know beyond any reason that God was present, and the rest of the world would fade away. It was like He was telling me to look past my own mind, and just trust. Hear My voice in the music. Hear each note. Don’t worry about where it’s going. Just hear the sound and know that it’s beautiful . . . And know that I am God. Trust. That was hard for someone who had grown up believing that success came from working the mind. I mean, think about it. I’d pushed myself to get straight A’s and high test scores in high school in order to get into a top college, which I managed in Stanford. Then after college, the financial markets were all about analysis—facts and data. As a currency options trader I lived and breathed economic indicators and chart analysis to get a fix on short-term or long-term movements. I was conditioned by reason.