Rex

by Cathleen Lewis

  Walking in the sand, we were now learning to nuance it. “Rex, we’re using our energy to walk, but if we walk faster we’ll use more energy,” I said picking up the pace. Moving into a slight jog, I added, “And if we run, we will use . . . ?” I paused, waiting for him to fill in the blank.

  “More energy!” he shouted.

  “Yes, but if we run too much, we won’t have any energy left and we’ll have to stop and . . . ?”

  “Rest!” Rex was very good at filling in appropriate responses, which helped him follow and build logical sequences.

  “So we can get . . . ?”

  “More energy to run some more!” Rex said, tugging at my arm. But he was out of breath.

  “That’s it, sweetie. But I’m a little tired. So why don’t we sit here and rest for a moment?”

  Rex agreed, using my sentence, and turning it into his own question. “Mommy, shall we sit here and rest for a moment?”

  “Good idea, Rex!” I sat down, and he plopped into the sand. There wasn’t another soul anywhere on our stretch of beach, and I felt the glow of the sun warming me, the sound of waves soothing. “Rex, do you hear the waves?”

  “The waves are crashing!” he said, excited. “I’d like to tell a story about a little boy named Rex who goes to the beach.”

  Putting himself into adventures was his favorite thing to do. We told stories a lot, in order to help him develop an imagination, as well as work on language. The storyline always had to be concrete and related to activities from his life, but then we could intermingle characters from the vast wealth of audio books he listened to. Since Rex’s world revolved around Rex, in the manner of a very young child, the stories we told normally had him as the hero, going to battle against such foes as Captain Hook or Shere Khan, the great tiger of Jungle Book fame.

  “Go ahead Rex, tell me a story,” I said, despite knowing he meant he wanted me to tell him the story. Normally I would begin and then craft it into a team effort, cueing him up for his turn with a question or a blank to fill in. Soon, I believed, he would be able to sequence a whole story on his own. I felt it coming. There was a lot locked up in my little boy that just needed to be pulled out . . . creatively.

  “I want Mommy to tell you a story about Rex,” he said, right on cue.

  I couldn’t help smiling. Sometimes it was my son’s predictability that filled me with love, and sometimes it was just the opposite—that jaw-dropping surprise you didn’t see coming . . .

  I began. “Once upon a time, there was a little boy named . . .”

  “Rex,” he jumped in.

  “And what was Rex doing?” I asked.

  “Rex was running on the beach . . . with good energy!” he said proudly.

  “Yeah. That’s right. Rex was running on the beach. And then there was a wave. Way out in the ocean. A big, giant wave. And what was the wave doing, Rex?”

  “The wave was crashing, Mommy!”

  “Yes, and where was it crashing?”

  “The wave went crash!” he said. Then, laughing, added, “The wave was crashing on Rex’s back. And Rex fell down, and he was smashed by the waves.”

  “No! He can’t be smashed! Our hero Rex must be saved, to come back another day. So who saved Rex? Was it the Little Mermaid?”

  “No!” said Rex.

  “Was it Hercules? Who could have saved Rex?” I asked, expecting the Herculean nod, or perhaps his current favorite, Robin Hood.

  Rex had his own idea. “It was Mommy. Mommy saved Rex!”

  He turned to me and threw his arms around me. I squeezed back, hard, not wanting to let go, knowing only the depths of love I had for this child and, on occasions like this, how safe that love made me feel. “And you saved me, Rex. You did. We’re a family. We take care of each other.”

  Rex pulled out of the hug, too soon for me, but it looked as though he had something on his mind. I thought he wanted to go on with the story, but he said only, “Mommy?”

  His face was pointed at mine with such intensity that it looked almost as though he could see me. “What is it, Rex?” I asked.

  He was trying to process something. I could tell by his concentrated look that it was hard. “Mommy?” was all he could get out again.

  Trying to coax whatever it was out of him, I said encouragingly, “You have to tell me what you’re thinking.”

  The struggle continued as my son rocked back and forth in the sand. “Mommy?” he said. I waited. “Mommy?” he repeated, louder, like he was trying to get enough energy, revving up an internal motor to get the momentum to get his thought out. “Mommy?”

  “Rex?” I said, giving a slight nudge to pull his thought forward.

  “I love you, Mommy!” he burst out, triumphant, his face mirroring his words, telling me how real they were.

  I love you, Mommy! The four words I’d been waiting so long to hear, not knowing if they’d ever come, or if they did, that they’d be truly felt. Those four words took my breath away . . . but then pumped it right back into me, fuller and more alive. How many specialists had wondered about my son’s ability to feel complex emotions? Sure, he played emotions like happy and sad on his piano. But what about emotions like anger, friendship . . . or love? As I threw my arms around my son, I knew that he was the one who had just saved me from all those crashing, smashing waves.

  As I threw my arms

  around my son, I knew that

  he was the one who had just

  saved me from all those

  crashing, smashing waves.

  REX FINALLY got his computer at school. It had been a ten-week wait, but that was because he had first gotten the software, which didn’t work on any of the current classroom computers. That, of course, meant he would need a new computer. So, more red tape and waiting. But now at least he was equipped. In the meantime, his teacher of the visually impaired had ceased and desisted with the Braille, which meant Rex wasn’t exhausted and apathetic all the time. I believe that fact alone helped him to make his real breakthroughs, such as grasping an abstract concept like energy or expressing the true emotion in “I love you.” Gone were those draining Braille sessions! Over the next couple of weeks, it became obvious Rex began to look forward to the days when he would see his vision teacher and the work they did together on his new computer. I knew this from his morning spiel, which had now changed to include events he anticipated, such as, “Today is Tuesday, and I’m going to see Karen and work on the computer.” His big smile said things were turning around. Yet, in spite of the progress in some areas of his education, I wondered what was being done to promote Rex’s interaction with his peers. Hadn’t that been a priority? Yet, to date, I hadn’t had much feedback in that critical area. Had all my words been wasted, falling on deaf ears? Or ears that were too busy to really hear?

  Sitting at my own computer one night, with Rex tucked into bed, I was reflecting on his dependence on the people around him—starting with me and then his piano teachers. But that was an easy dependence, because I was dependable where he was concerned and he was musically gifted. But what about his reliance on his teachers at school where he was anything but gifted? His dependence on the system? The fact was simple—there weren’t enough teachers of the visually impaired (TVIs) to go around.

  Blindness was a low-incidence disability, and so not enough people had gone into the field. Before they had hired Karen, our district had no one to work with the blind students for almost an entire school year. There were just no applicants, no one qualified. Learning about the deficit of specialists in the area of blindness, I had made a big personal decision. I wouldn’t just complain about the system and its problems; I would get inside it. That meant going back to school myself and becoming trained. How many other children were out there floundering in the system because they were misunderstood or misplaced? How many parents didn’t know any better? How many other parents felt lonely and cut off from noncommunicative teachers?

  I felt the call to lend a hand and bring parental pers
pective into the classroom by earning a credential. The law gave me parental rights, but a credential would give me equal professional footing to assure my rights would be adhered to. The inspiration couldn’t have come at a better time. I would need to get back into work life soon anyway, and I’d want to do something I was passionate about. Just as I was clicking on the Web site of the only university program in Southern California to train specialists in the education of the visually impaired, the phone rang.

  “Hi, it’s Pat Cairns,” said the voice. I had never received a call at home from my son’s principal, so I hoped it wasn’t bad news. “I just had an idea for Rex—how to help him mix with other students. Do you think he would like to play his piano for our yearly talent show?”

  I had a vision of an auditorium full of kids watching my son’s amazing gift at the piano and said, “Yes. That’s a wonderful idea.”

  “It would give more kids the chance to hear Rex play, and parents too. I think it would be great for everybody,” Pat said. “It might just be the bridge we’re looking for.”

  “Yes, thank you,” I said, at a loss for words. “Thank you. Yes, I’ll look into it.”

  The auditions for the talent show had already been held. But I took Rex to a rehearsal to try to get him into the roster after the fact. The mother who was organizing the show took one look at the blond boy feeling his way with his cane and said, “Of course, he can play something.” His audition not only got him in the show but won him the spot right at the end of the program, the coveted finale. “Just what we needed,” she said, after he’d played and sung a bluesy version of one of his Beatles favorites “When I’m 64.” “A good closer!” She had a smile of wonder on her face, the look of one who’d discovered a hidden pearl, and I had a smile in my heart.

  Vocalists, pianists, skits, and dancers. The students in Rex’s school had many varied talents. And they were supportive of one another, encouraging, clapping. But the other kids all knew each other and were friends. They knew Rex, too, but only as that little blind boy—the one they saw on the playground with his cane and his adult aide. Sure, some of them went up and greeted him, but they rarely stayed to play. He wasn’t really their friend. So how would this group react when Rex took the stage?

  There was a hush in the audience as I walked Rex to the piano. There had been talk that the little blind boy could play the piano, but what did they think that meant? “Mary Had a Little Lamb”? Or were they expecting a duet? Mommy plays the hard part, then son pipes in a few notes, as we did with our storytelling?

  I helped him center himself on the piano bench, helped position his mike, then stepped aside. His schoolmates were all sitting in the front rows with parents behind as he began. But began what? This wasn’t the song he’d planned. Was this God winking again? Rex broke his script, surprising us all as he began to sing the blackbird’s song.

  His sweet voice floated wistfully over the room, asking for eyes that could see and wings that could soar, as he wove Bach-like trills into the musical line, giving the piece lightness and air.

  There was a collective, spontaneous gasp from the audience, parents and kids alike. This was not what they’d been expecting. Not at all.

  There were no more sounds from the audience, and, except for Rex’s pure soprano gliding atop his chrystalline piano notes, the room was so quiet, it was almost solemn. No shifting or shuffling, no sideways whispers, just reverence, as if they were listening to a prayer. Was this my son’s prayer? Did he want it for himself as much as I did for him?

  I can do it! As though he were willing himself to fly alongside the blackbird. His fingers and voice were now in full flight, soaring beyond limits, beyond disability. And with the spotlight hitting his blond locks, like a light from heaven, his cry for freedom sang out into the room. I can fly, Mommy!

  Into the light of the dark, black night.

  There was a pause, a suspension of disbelief as the notes trailed off. And the kids were the first to shout. “Rex! Rex! Bravo! Great job!” And the parents were the first on their feet. And all were clapping, heartfelt and real. And Rex felt all of it, how special everybody thought he was. I looked back and forth from my son jumping up and down on stage to his fellow schoolmates, my eyes clouded by tears. Then I glanced to the back corner of the auditorium, where the principal stood nodding. She was smiling as I caught her eye, as if to say, “We just got it right.”

  WE WERE planning a trip to an amusement park, and we had invited a friend whose high school daughter, Jessie, babysat Rex from time to time. The daughter would come and so would her brother, Brian, who was a year older than Rex and had always treated him very well. I thought it would be great to have a peer near Rex’s age come and spend some time with us. However, boys will be boys, and they have their pals. So Brian asked if it was okay if he brought along another friend as well. Thinking the day might be even better with a couple of boys, I gave my okay. We would all go in one car, my friend’s family-sized silver Suburban.

  The morning came, and the big Suburban lumbered into our driveway. Rex and I walked out, equipped with our backpacks filled with all the necessities for such an outing, most importantly, the “food support” his ongoing feeding issues required, but also a Walkman equipped with noise-cancelling headphones in case the clanging and clanking and overall hullabaloo became too much for him. My friend was smiling out the car window, and so was her daughter.

  “Rex, are you ready for a fun day?” Jessie asked.

  “You’re ready for a fun day,” Rex said eagerly, loving all those spinning, twisting, jerking rides he knew were awaiting him.

  The two boys were in the back. I could make out Brian, but I couldn’t see the other boy’s face until I opened the door to the car to get us in. My heart stopped when I saw the face looming from the back seat. Not him! He was older, but I couldn’t mistake that face. I could see that same face, laughing and smirking at my son, while he and his buddy waved their hands in front of his unseeing eyes. That bully from two years ago! The awful scene flooded my consciousness, and my stomach knotted as I steadied myself for yet another confrontation, when Brian said, “This is my friend, Drew.”

  “Hello, Drew,” I said icily, not acknowledging our prior run-in. “I’m sure you know Rex,” I added, with a steely look. Why was this boy being forced on us? I didn’t have long to wait for the answer, but it wasn’t what I expected.

  “Yes, I know Rex,” he said, and then spoke not to me but to my boy. “Hi, Rex. Do you like to go on rides?”

  “You like to go on rides,” Rex answered.

  Drew was smiling. Was he going to ridicule Rex’s pronoun confusion? I was ready to stop any such thing dead in its tracks, but what happened next did just that to me instead.

  The boy’s voice was full of respect as he said, “That’s cool, Rex! I like rides, too, especially roller coasters. Maybe we could go on some rides together.”

  I looked from Drew to Rex, trying to assess what was going on here, as I helped my boy climb into the car. “Well, we’ll see,” I said, not trusting this boy. Brian climbed into the far back of the Suburban to leave room for Rex and me on the middle seat next to Drew.

  The boy reached over to help Rex with his seat belt and said, “I thought you were great in the talent show, Rex. You’re a great pianist!”

  “Thank you,” Rex said, beaming. How my child came alive when he was praised and appreciated! That was it! This boy had seen another side of Rex in the talent show, so now my son was a person and not just “that blind kid.”

  “I play the drums,” Drew threw out to Rex. Then he added, “Maybe we could get together sometime and jam!”

  Rex remained silent, not answering. But it didn’t diminish the offer . . . the potential . . . and the wonder of it.

  Mean-spirited bully turned potential friend? How could that be? Was I dreaming? Or had God heard a prayer in Rex’s song?

  CHAPTER THIRTEEN

  Musically Speaking

  One has to find a b
alance between what people need

  from you and what you need for yourself.

  —Jessye Norman, opera singer

  Rex’s piano teacher Richard Morton heard something altogether different in Rex’s song. In fact, not just in “Blackbird,” but in every note my son played. Perhaps he allowed that God was playing a minor role, but to him Rex was first and foremost a scientific mystery, an intellectual teaser, a limitless source of fascination, frustration, and overall awe. Ever since the day he had used the word savant to describe Rex, his obsession with Rex had been growing. In fact, Richard insisted on spending so much time with him, to develop his genius, that our forays up the magical musical mountain to work with his other piano teacher Lynn, became fewer and fewer until they stopped entirely. Richard’s increasing domination of Rex didn’t leave us the time for other teachers. As a result, the balance we had found previously between science and God in Rex’s two piano teachers began shifting dangerously out of balance.

  A prodigious musical savant! I hated the label that reduced the beauty of my child to a sort of scientific anomaly. Yet, at the same time, this man was devoting himself to developing Rex’s piano music. I couldn’t deny that. So I found myself compliant the day he said, “Would it be okay if I brought a cameraman to film a lesson with Rex?” He wanted to begin a sort of “running record” of my son’s music, and presumably his own role in that development. I found myself raising my eyebrows but only voicing minor reservations the day he announced, “I’ve been nominated as a Volvo hero for my work with Rex.” He explained that someone through his “savant network” had put his name into a national contest to award everyday heroes. Then a couple of months later, he won third place in the same contest, and I congratulated him but had an uneasy feeling about the whole thing. However, when I learned he was discussing my little boy’s life and development, in addition to his music, with a variety of scientists and researchers in the field of musicology, I took him to task.