Rex

by Cathleen Lewis

  Linda admitted that was true but said his extreme sensory issues were typical of a child with autism, as were his flapping arms and other repetitive body movements such as hitting his chin or the table in rhythmic patterns.

  Autistic behaviors didn’t mean autistic! No way! Because it was obvious Rex could have social relationships. I’d read all about autism, and he wasn’t distant and removed like the literature described those children—except, of course, when he would crawl into his protective shell. But that was caused by external stimuli, not a result of his permanent state.

  “He’s not autistic,” I said, as if I were stating a fact, leaving no room for discussion. “He just needs time for his brain to mature.” I left the conference in a huff, refusing to give merit to the teacher’s rash and uncalled-for assessment.

  I couldn’t deny the obvious, however, that Rex seemed to be crawling more and more into a protective shell, not the opposite. Why weren’t classic therapies working to rebalance his sensory system? Sometimes I’d look at his face, and yes, it was completely empty, as if the child had receded so far inside as to be invisible from the outside. One afternoon I sat in the living room watching my son mindlessly tapping his chin with a blank, removed look on his face. The day had been hard for him, so I understood. But I knew my child was in there—even if he was hidden.

  Autism? No, it couldn’t be, because I got to see the real child, a different Rex entirely, when he didn’t have to confront the world at large. That Rex was joyful. I got to hear the laugh, see the light in his eyes. It was there, but only when I made sure his environment was filtered, which was only really possible at home. Especially now that his sensitivities included things like rain! How could this beautiful child who existed only in a completely controlled environment, be brought into the world? And not just survive, but thrive? Would he ever be able to embrace the sounds and beauty of the world, or would they always be tragically distorted for him? How could God have allowed this to happen to a child? Rex was innocent; he’d done nothing to deserve the life he had.

  My son hadn’t gained a single ounce since his first birthday. He’d begun the year at twenty pounds; two months before his second birthday he tipped the scale at the same weight. Almost a year and no weight gain for a soon-to-be two-year-old! Rex was now subsisting mostly on liquids and the small bites of puréed food I could manage to get into his overly sensitive mouth. We faced all this with the ongoing threat of a feeding tube looming over our heads. In areas of development, the news was even worse than his zero weight gain. Rex had lost skills he had acquired before the age of one, such as finger feeding and pulling himself up to stand. The fact was our lives had been utterly ripped up, torn to shreds by Rex’s sensitivities over the course of the year. In the beginning, my husband had left the entire emotional and psychological task of raising our son to me. Over time, the distance between us had grown. Now it was cavernous, and he said he was leaving. He “couldn’t do it anymore,” was the way he put it when he asked for a divorce.

  It was the story of so many fathers—that’s what the statistics confirmed. Seventy percent of married couples with a severely disabled child end up divorcing. I knew of the division of roles in our household, and apparently we were the statistical norm. The father earns the living while the mother copes with the rest. The psychologist at the Blind Children’s Center, Miranda, had explained how that leaves fathers insulated from the day-to-day intense stuff mothers live with, which leads to isolation and ultimately alienation. The father didn’t forge the same bond with the child, that fierce love bond so necessary to deal with extreme disability.

  My husband’s sudden departure left me more thankful than ever for my solid career experience in Paris before my marriage. Rex and I would be okay temporarily. Though a world away from trading stocks and the money markets now, success in that world would provide shelter for a time. It would allow me to escape becoming a financial statistic along with everything else. How many other mothers in a similar situation would have to face the heartbreaking choice between earning a living and devoting critical time to their special-needs child? I’d have to watch our financial situation, but we’d be okay for a while. However, the same could not be said of my emotions.

  There were days after my husband left when my knees would just buckle or my mind would become confused. One day I came home to find the specialist from the Foundation for the Junior Blind pulling her car out of our driveway. As I flagged her down, I said, “Ana, what are you doing here on Tuesday?” When she told me it was Wednesday, her normal time to work with Rex at home, I stared at her blankly for a moment, unable to connect her words to reality. Was it Wednesday already? One day blurred into the next.

  “Are you okay?” she asked.

  “Yes, of course,” I answered. But was I?

  The fact was my own nervous system had become as fragile as Rex’s. I would cry at the drop of a hat. I was terrified I’d just tumble over. As if I were standing on the edge of a great precipice, the more I tried to back away, the more the ground crumbled under my feet. Sometimes Rex could manage to keep me on solid ground just with a smile, but the weight of our lives had become too heavy now. Rex and I were alone.

  It was as mother and son, equally fragile, equally broken, that we made our way up the hill to Malibu Presbyterian Church a month before Rex turned two. My older brother Alan had come up from San Diego a few days before, and I had been sitting with him in my living room. Shaking my head, I said, “I just don’t get it. I don’t get what it’s all for.” Meaning Rex, his condition, our lives, everything.

  My brother looked at me intently, his eyes boring in. He had the resolved look of someone who had just made a decision, and his voice took on a soft-spoken and solemn timbre. “It’s simple. It’s to glorify God.” His answer surprised me; it was not at all what I’d expected, if indeed I’d been expecting anything. I had no idea what he meant. Our family hadn’t gone to church when I was a child, except for special occasions, and my big brother had grown up alongside me. So what did he know that I didn’t?

  “I don’t know what you mean,” I answered feebly. I certainly couldn’t manage the connection between glory and God and a child who was obliged to live like Rex. It sounded as disconnected and surreal as the life I was living. Had I not been so tired and confused, it would have made me angry.

  Alan grew quiet, contemplative. I knew this meant my usually gregarious brother, whom I’d been so close to growing up, was full of real emotion. He said, “I’ve been wanting to talk to you about something for a while now.” There was meaning attached to each word, which drew me to attention.

  My brother had lived a good life. That I knew, even though we’d only been close through the high school years, since afterward I’d gone away to college and from there moved abroad until shortly before Rex’s birth. Alan had been the most popular kid on the block, Little League baseball hero, remaining the big athlete on campus up through his high school years. He had even been voted Best Personality as a senior. Now he was married to his college sweetheart, Jenine, with whom he shared the parenting of two beautiful children. It all looked pretty good from where I was sitting, so I didn’t immediately grasp what he was saying.

  “I realized I was still stuck in the glory days,” he said. “Yeah, I thought I was pretty hot stuff back in high school—big athlete.” He paused and shook his head, full of emotion. “I was pretty full of myself.” Then he spit out, “Prideful!”

  It had a heinous sound to it, as if there was venom in it, as if pride was a thing to be loathed. I’d never heard it used that way before, since I’d always thought taking pride in oneself was a good thing. Pride helped you achieve, and being a “high achiever” was a thing to aspire to. I know how much I’d loved the label growing up. I’d worked hard hoping to make my mom and dad proud. My throat caught as I remembered that brief moment of pride I’d felt in my own son—my little blind son facing down the world on his first birthday. But here was my big brother, whom I�
�d so admired growing up, describing that very emotion, pride, as an obstacle. An obstacle, not a vehicle to achievement.

  “Big-time pride,” he said. “Yeah, I think it was bigger than me,” he added, chuckling, “but I realized how empty I was outside of it.” He shook his head softly, his eyes going back to what was obviously a painful time for him. “How empty I was,” he repeated in confirmation. “And I asked myself the same question you just asked. ‘What’s it all for?’”

  My mind was struggling to catch up as my big brother went on to describe how he’d discovered faith. Not faith in himself, like he’d had in excess when we were growing up, but true faith in God.

  His words had definitely taken me by surprise, not at all what I’d been expecting on a Saturday afternoon, but there was some-thing in what he said that made me feel close to him in a way we hadn’t been since those high school years. And yet I could not, by any stretch of the imagination, describe my own state as emptiness. In fact, it was the opposite—crammed with daily crises, my state was more akin to overload and sheer desperation.

  That night, before going to bed, I was washing my face when I glanced in the mirror. I was shocked to see the face that was staring back. That couldn’t be me! What had happened to the confident and joyful young woman I used to be? Where was Cathleen? Where was the girl who had gone off to live in Paris, to seek adventure, to see the world, to experience life? Where was she now? I saw the lines of fatigue around my eyes, the pallor in my skin. I tensed my facial muscles, but the set in my jaw and brows became too tight, too rigid, making my face look harsh. Yet when I relaxed the muscles again, the vision staring back at me looked slack—unnerved and undone. There was no in-between, no relaxed softness left in my face or my being. That’s when I realized how tightly I’d been holding the reins, and for how long. I’d had to, just to keep from breaking. Now the undeniable truth was staring back at me in the mirror, etched in the dark circles under my eyes—I was on the verge of a nervous breakdown. I’d been living in this state for too long—twenty-four hours a day, seven days a week—to go on without rest. I didn’t know whether God would have anything to offer Rex or me, but I did know we had nowhere else to turn.

  I didn’t know whether

  God would have anything

  to offer Rex or me, but I

  did know we had nowhere

  else to turn.

  So here we were, entering the sanctuary of “the church on the hill,” as I’d always thought of it. I was scared and apologetic that Rex had to stay with me, seated in his stroller. “He can’t go to the nursery,” I said to the usher at the suggestion. “He’s blind.” As if that should explain everything. The usher was an older gentleman with white hair and a kindly look, which put me at ease.

  “It’s okay. Don’t worry—we’re used to having kids here,” he told me when I looked mortified at some of the strange sounds Rex had begun making even before the service started. But, thankfully, once the worship music began, he was pacified and listened quietly, intently even. I don’t know whether it was the kindly words of a stranger, Rex’s look of contentment at the music, or God’s holy presence that caused me to relax in a way I hadn’t done in months. How good it was to just sit there. I could feel the tightly coiled knots in my stomach begin to unwind, releasing the constant pressure. I looked at Rex in his stroller. There was an expression of peace on his face, a calm that was far removed from his frequent apathy. Could this be, at long last, a moment’s respite from the storm? Suddenly, the tears I hadn’t allowed myself before began falling softly, silently, but uncontrollably.

  Over the next weeks, I realized I was going to church to petition God on behalf of my son. Maybe it was spiritual naïveté to think I could either bargain with God or dictate to Him how to be glorified, but that’s exactly what I was—spiritually naïve. It seemed logical enough, at the time, to think God would heal Rex in exchange for glory. And so I began praying for my son. I didn’t know whether God would listen to me, someone who had been so conspicuously absent from church throughout my whole life, so I enlisted the church to pray for Rex as well. Make him walk, Lord! Make him talk! Show Your power! For Your glory! Day after day, week after week, it was the same prayer.

  With Rex’s second birthday just days away, he had still not taken his first step, which had seemed so imminent a year before. Nor had he begun to speak; his incessant babble of the previous year had all but disappeared in favor of sounds that didn’t resemble speech at all. Still, there was something I had come to observe in Rex that had become a constant since that rainy day in January. It was amazing to watch him listening to music, notably classical music, ever since he’d discovered Mozart. Oh, I knew the theoretical link between such music and brainpower, but this was more direct. When my son was listening to the music of the great classical composers, there was a look on his face that seemed to say, “This I understand.” Like he was leaving us mere mortals here on earth, to stroll for a while in the heavenly realms with the likes of Bach and Beethoven, as if he somehow had direct access. It was an even sharper contrast, given the rest of the world, which he’d been denied. There were his rhythmic skills too. He loved “the clapping game.” I would clap out patterns that were so complex I could barely remember what I’d done myself. But he’d inevitably clap them back, flawlessly. All done with a twinkle in his eye that again said, “I get it.”

  We turned the page on Rex’s second calendar year without William. When Rex’s father came to visit some time later, he was bearing a present. I was pleasantly surprised to find he’d actually been listening when I’d described Rex’s affinity to music. For here was a forty-eight-key Casio piano keyboard and stand. William set up his proud offering, and we stood Rex right in front of the instrument. “Rex, look, I’ve brought you a piano,” his dad said.

  Rex’s hands balled into tiny fists and shot straight back to his shoulders the moment his tummy came in contact with this foreign object. That was his typical reaction to touching something new. Usually, it would be a matter of literally peeling his hands open and forcing him to touch. Then, one of two reactions would ensue: either he’d pull his hands away with no verbal response, or he’d begin screaming like he’d been scalded.

  “It’s a piano!” I said with excited emphasis in my voice, trying to draw Rex in, distract him. At the same time, I took his hands without opening his sensitive palms and brought them down on the keys. They shot back up immediately in a conditioned response as the notes floated through the air. We watched Rex, and as I was wondering what to do next, a strange look slowly came over his face, like some kind of internal light. I didn’t dare breathe for fear the look would disappear. But it was there, unmistakable and absolutely breathtaking! Rex was intrigued. As I continued to hold my breath, I felt a huge lump rising in my throat, and I watched my son’s tiny arms relax as he brought his hands down to strike the piano keys with closed fists. But this time, they stayed on the keys as though glued in place by the tones rising up to his ears, and a look of wonder consumed him as his taut fingers slowly uncoiled. Gradually, he played one note, then another, then both hands intermittently like a kind of drum roll.

  “Look up here, Rex,” I said as I hit a note at the upper extremity of the keyboard. Since he couldn’t see, he didn’t know how far the piano keys extended in either direction and was striking only the keys in front of him. What was that? A new sound? his face seemed to ask. Now he wanted those high notes and reached for them, but he couldn’t extend the whole distance without toppling over. Instead, he came down on the keys in between. A look of comprehension dawned on his face. These are new tones. Then he took both hands (playing in sync), made a rhythmic pattern of six notes going up the keyboard, and replicated it. Same pattern, same notes.

  William and I watched Rex lay his hands fully on a mass of keys to combine notes, dissonant but a blending nonetheless, as if he was seeking a more complex sound. Then he continued his exploration, enraptured, just as we were. Since the day we’d learned
of Rex’s blindness, the divide between William and me had been ever broadening. The result was our recent separation. But we were back together on this afternoon, as if to bear witness to something extraordinary. In that singular moment, we were bonded in our little boy, who’d spent his first two years fighting a losing battle in a hostile world. I even caught a trace of mist in William’s eyes as he realized how absorbed his son was in every note of the little keyboard. It was like our boy had been transported to a friendly world, one he understood, where the pain of his daily existence was held at bay. For those brief moments, it was as if the piano had freed him from the constraints of his body. It became his eyes, and the notes became his voice.

  For those brief moments,

  it was as if the piano had

  freed him from the constraints

  of his body. It became

  his eyes, and the notes

  became his voice.

  All too soon, the spell was broken. Rex finally tired of playing the little keyboard, and we were rudely jolted back to real life. With the music gone, the usual awkward silence once again filled the room, splintered only by emotions that again seemed forced. “Wasn’t that amazing!” William said in a voice that had gone flat. All of a sudden in a hurry, he announced he had to go. He called Rex a “clever little guy,” threw him up in the air a couple of times, which always brought giggles of delight, and then was gone. As the door closed with resounding definition, I knew it was final; the separation would indeed be permanent. Rex and I were alone, alone with a little piano keyboard.

  But something else had happened, as obvious to me as the finality of William’s departure—an extraordinary event had taken place. Had the same door that closed on the father allowed an opening for the son? Had Rex just been given a lifeline?

  OVER THE months that followed, it became apparent that that little piano hooked Rex into life in a way nothing else had. It wasn’t just a fluke or my desperate mind exaggerating reality or a passing fancy; it was a passion! He could play that little piano until he dropped from pure exhaustion, and he did just that, day after day. There were days when he’d stand at the piano, which strengthened his legs. When his legs would tire, he’d plop down to the floor. Even then, I’d watch him reach up, arms extended over his head, needing to play on. At other times, when he played sitting down, he’d go at the keyboard until he would eventually topple onto his side, but he still continued to reach for the instrument as if it were a magnet—drawing him, holding him, possessing him—until, sapped of all strength, his little arms would fall, deadweight, to his sides.