Rex

by Cathleen Lewis

  I found his antics amusing. Even if he was foiling my labored attempts to feed him, I knew how important it was to give him a sense of control through the use of language.

  Clever boy that he clearly was, he soon realized there was another word that was part of “cup,” which he could use to avoid being forced to walk. It was “up,” meaning, “Pick me up, Mommy.” Rex’s first two words became the tools that allowed him to escape what he must have perceived to be torture—eating and walking!

  Several weeks passed with Rex flaunting his new power, but no other verbal communication emerged. This made me wonder just how much he understood of the spoken language. He was almost three and a half, and he’d never answered a question. He only used his two words when he wanted to avoid a negative consequence. His speech therapist didn’t really know what to think. She was thrilled with his ability to voice words, but instinctively, I think she had been hoping for more. At the Blind Children’s Center, the concern was focused on his extreme sensitivities and on his new use of language to escape attempts to push his development forward in other critical areas. The doctor said Rex had to eat or he would end up with a feeding tube in his stomach. That meant he would have another tube in his body along with the tube draining his brain. He couldn’t live forever off the scant bites of purée and Carnation Instant Breakfast that had long been the mainstay of his diet. I refused to even consider it for the time being. I’d just spend more time to work more food into his mouth. Walk by faith, not by sight.

  In the meantime, there was another concern that made me feel the passage of time even more acutely than his extreme feeding issues—those infernal spaghetti legs. At three and a half, he was getting heavier by the day, too heavy to carry around, and he was outgrowing his stroller. Why did he keep collapsing his legs? He had the ability to walk, he had shown us all—his physical therapist, the staff at the Blind Children’s Center, and me—that he could, and yet he wouldn’t, especially now that he had the word up in his “control and defend” arsenal. Maybe I hadn’t been tough enough these past few weeks, caught up as I’d been in the joy of hearing him use language, his two grand words. The scary reality of what we were facing struck in his physical therapy session, when his therapist Tam pulled out a catalogue and showed me some lightweight wheel-chairs. “He doesn’t need anything heavy-duty,” she said, as if that might soften the blow, “but he is going to need something soon.” Her words felt as if she’d doused me with cold water, and I couldn’t get the thought out of my mind all week.

  Walk by faith, not by sight. I could hear the words at night and clung to their promised hope during the day, because I felt letting go would be the end for us. And yet a question began to arise in my mind. How do you have hope without getting lost in it? Without leaving yourself open to letdown or eventual heartbreak? I wasn’t sure I could find the answer by myself.

  It was Friday afternoon, the ending to what had been a very long week. Arriving home after therapy, I needed some air. I was hoping Rex would be up for a walk down to the beach. I wanted to catch the sun setting over the water, such a beautiful sight these days. The golden hues, slightly tinged with red, reflecting off the ocean and framing the horizon, had never failed to inspire me with that sense of hope I so needed right now. We were deeply into autumn, the air crisp and clear, but the days were becoming shorter. In spite of the unmatched beauty of a November day, it was a period of the year that normally didn’t set well with me, filling me with angst, merely because daylight was giving way progressively to nighttime. Darkness stealing light. It was an irrational fear, I knew, but still ever so real when added to the reality I was living with my son. But this afternoon I was hopeful that the life-affirming beauty of Creation would prove hope is stronger than fear. I blocked out images of lightweight wheelchairs, feeding tubes, and any other artificial support for Rex as I told him how fun it would be to walk down to the beach so “we could listen to the waves going crash.” Normally, when I said the word “crash,” I would pretend to throw him down, a game he loved. As I did so now, he laughed in spite of the end-of-day tiredness, so I knew it was a go. Our “walks” to the beach consisted of me coaxing him to walk a short distance and then giving in to his cries of “up,” which would normally get louder with each step he was forced to take. Then I would carry him the rest of the way.

  But today I did things a little differently. I began by carrying him, and then stopped midway to the beach along the sloping entrance driveway to our condominium. Instead of heading directly toward the sand, which would take us down the sloping driveway, for some reason I looked in the other direction. Had it been a bird calling out from over there that had drawn my attention? The sound of a car behind us? Or just the silent whisper of a brisk autumn day? I looked up to the top of the driveway. There was an outdoor parking lot, the tarred surface buckling and cracking in several places, begging for repair. There were also planters brimming with pink and red geraniums skirting the road, adding spots of color at the base of the predictable palm trees. But today, all I really saw was the driveway itself, its slope, and how steep it became at the top. Suddenly, I had an idea. I carried Rex all the way up, then quickly set him down onto the tarred pavement, facing him down the slope. His legs were rigid as he stood there, stiff as rods, which was normally the way they got right before they went “spaghetti.” Going from one extreme to the other—hypertonic to hypotonic mush. Before his legs had a chance to buckle, I gave him a slight nudge on his back and said, “Go, Rex, go!” I jumped in front of him, poised to catch the inevitable fall, as he took the first faltering steps I had forced him into. But he held himself up as the slope made his legs move faster. Gaining momentum, he began walking faster than he ever had, while I backed up in front of him, guiding him with my voice, egging him on. “Rex is walking faster and faster! You can do it, Rex!”

  Then, as though a Divine hand touched my son, I felt something infinitely higher supersede my own efforts as a sort of ecstasy swept over him. Gone were spaghetti legs. Instead, his legs were infused with vibrancy and strength as he walked faster and faster, until he was walking too fast for his own legs. But he didn’t stop; he couldn’t! And he didn’t pitch face-first into my ready arms either. Instead, with his motor all revved up, he began running! My child began to run! His face registered disbelief, having never done anything remotely like this before, but he ran faster still, veering right, then left. He tottered, his arms flailing like a novice skier. Yet he had no fear, and his balance held as he ran faster and faster. His face was alight with surprise at what he was doing, the discovery of what he could do, and I gaped in awe myself. His disbelief gave way to overwhelming joy in the thrill of intense movements in his little body, the body that had been barely mobile for so long.

  “That’s running, Rex!” I shouted. “Isn’t it fun?” As he broke the chains of his body, his legs spinning full speed, he began laughing as he ran. It was infectious, a laugh straight from his belly, its resonance testifying, like nothing else could, that God was on high and all was right with the world.

  As he broke the chains of

  his body, his legs spinning

  full speed, he began laughing

  as he ran. It was infectious, a

  laugh straight from his belly,

  its resonance testifying, like

  nothing else could, that God

  was on high and all was

  right with the world.

  That night I lay in bed floating on my own high, full of the joy of the day and full of peace. Rex had gone to bed easily and was sleeping soundly, his body exhausted. This time it was the peaceful exhaustion of good physical exertion. If I could etch a picture in my mind that would endure throughout eternity, it would be Rex’s arrival at the bottom of our driveway that day, his look that of an Olympic runner breaking the tape at the finish line to win the gold. It had been a perfect moment. As I lay in bed, I acknowledged how few moments in life touch us to the core of our very being. Moments that make the rest of
the world fade into nothingness. Moments when the past is a distant memory and the future remains far away and irrelevant. It’s in those moments that you know what you need to know and you forget what should be forgotten. You have a brief glimpse of eternity, as time is suspended as though God is looking you straight in the eye, with a smile that leaves you clear in the knowledge that all is right and good and is as it should be.

  In the days that followed Rex’s miraculous run, he was like a child who’d been given a bite of sugar. He wanted more. Now he knew what it felt like to really move, flying through space for the first time on his own, and the great way it made his body feel, all that adrenaline coursing through him. The problem was that his brain still had some defective motor wiring and conditioning to overcome. That’s where music stepped in. Every time he appeared to be frozen on his legs or ready to buckle in spite of himself, I (or his teachers) would begin to sing a catchy tune. That was our “control switch” that allowed him to bypass conditioned response, and he would begin to walk or run, fueled by his memory of what fast movement felt like. I prayed that over time this musical “jump start” would help my son’s brain create new conditioning in his motor responses. Interestingly, Rex seemed more at ease running than walking, almost as though fast movement took fewer thought processes, less control. I’ve since equated it with the game of tennis; it’s easier to hit the ball hard than it is to hit slow finesse shots. But then, too, speed of movement gave him positive sensations that were clearly powerful motivators.

  As Rex was finding increased freedom in his body movements, his piano music became infused with faster tempos, bolder tapestries, and new, more vibrant melodies. It was during the Christmas season in his third year that I came to understand that Rex’s duplication of Beethoven’s “Ode to Joy” was definitely not a singular phenomenon, a musical miracle never to be repeated. Instead he began filling our living room with not one but several songs of the season, such as “Hark! The Herald Angels Sing,” “Joy to the World,” or his seeming favorite, “The Little Drummer Boy.” Anchoring his left hand on a single note, marking rhythms, he created melodies with his right hand. As he played “The Little Drummer Boy,” he would hum along to the melody, hypnotized, with a faraway look in his eyes, almost as though he were gazing down on the Savior child in a bed of hay. How I wished his humming would somehow miraculously become words so he could sing along with the piano. Because for us, Christmas wasn’t frosted cookies or other sugary treats. It wasn’t brightly colored Christmas decorations or finding the perfect tree. Nor was it toys, most of which were meaningless to Rex. It wasn’t even Santa Claus. Christmas was music.

  I witnessed this on the most festive day of the year at the Blind Children’s Center, the day when the LAPD arrives in force, its sirens sounding a salute. The police chief himself came bearing gifts for the students, and the entry parade provided a sort of VIP escort for the guest of honor, jolly old Saint Nick. As police chief Bernard Parks spoke to the directors of the Center, the real celebrity was being mobbed by the kids. The teachers were allowing one child at a time to sit on Santa’s lap, and it was almost Rex’s turn. A little girl named Maria, just a month older than Rex, who’d been in his class from the first day we came, had just jumped onto Santa’s ample lap.

  “Hi, Santa. How are you?”

  Maria’s mom, Claudia, raised her camera to take a souvenir shot, while Maria began reciting her Christmas list, not even waiting for Santa to respond. “I’d like a CD player, a Raffi CD, and a new doll and some clothes for her.”

  Claudia smiled at me and said, “Rex is so cute. Maria always talks about his laugh. She says it’s so happy, it makes her laugh too.”

  “That’s nice,” I said, distracted, since what I was really hearing was the verbal onslaught Maria was delivering to an amused Santa Claus.

  “Do you really go all over the world in a big sleigh, Santa? My sister left a whole bag of cookies for you last year, but the dog ate them instead. Would you like some milk this year?”

  Claudia looked at me as I gazed intently at her daughter. She laughed. “I think Maria just loves to hear her own voice, you know, like a lot of blind children. But as chatty as she is, sometimes I wish she’d stop talking.”

  I forced a smile, thinking of other moms in other places I envied so. I’d known Claudia since Rex began school there three years before—we’d both been in the same boat then, devastated and grief stricken by our children’s blindness, trying our best just to cope. Back then we’d had similar battles to fight, tough emotions to work through, but now, only three years later, our respective kids seemed to be living in different worlds. In spite of all of Rex’s recent breakthroughs, I couldn’t help feeling a deep, longing tug at my heart as I watched Claudia snap one last picture of her daughter talking Santa’s ear off. It was Christmas, and Christmas was the season of wishes.

  As Rex took his place on the jolly man’s lap, Santa’s jiggling belly and hearty “Ho, ho, ho!” made Rex laugh. Otherwise, my son remained silent. When Santa asked him what he wanted for Christmas, he giggled at the deep resonance of his voice, which was almost musical, but said nothing. Santa Claus didn’t mean anything to him, and he didn’t have his own wish list. But I did. As Rex began jingling Santa’s bells, I jumped straight to the top of the list, asking in silent prayer. I wanted a true Christmas miracle and nothing less than the big one. Let Rex answer Santa’s question. Yet, not wanting to seem ungrateful in my innermost desires, I hastily added my silent thanks. Rex’s piano music is amazing, miraculous. Thank You for filling our Christmas with it. I paused, feeling real awe at my son’s recent piano feats, certainly the hand of God at work. Yet I couldn’t hold back the truth in my heart. “But what I really want is to talk to my son!” I’d blurted it out loud this time, and Father Christmas looked up from Rex to me and gave me a benevolent smile.

  But Father Christmas isn’t Father God, and the holiday season came and went without that prayer being answered. December turned to January, then February, and my moods mirrored the increasingly gray and cloudy skies. I began to wonder more and more how much language Rex even understood, since he never answered questions. He used his two words when he wanted but never in response to a question. For example, at feeding time if I asked him what he wanted, he would maintain his usual silence. It was only when I would try to put food in his mouth that he would say, “Cup.”

  Was his communication ending after barely beginning? His teacher at the Blind Children’s Center was becoming increasingly concerned this was the case. At least that was the feeling I got when she gave him a daily choice of activities, only to be met with a blank response. And his speech therapist wasn’t making any progress either. I struggled to hold on to God’s words during these months in spite of the evidence to the contrary. Walk by faith, not by sight. But it was a real battle because I had prayed desperately for a Christmas miracle that hadn’t come. I didn’t know that God might just be planning on delivering on a different holiday altogether. In His time, not mine.

  Spring was now upon us, and Easter was days away. The “Beeping Easter Egg Hunt” had been a fun event at the Blind Children’s Center, even for Rex, who was often overwhelmed by the noise at parties. He had gotten a kick out of the musical quality of the Easter eggs. But now I was happy to have a week of vacation from school and all of his therapies. That way we could disconnect from the expectations that swirled around us and just “be” for a few days. That’s the only thing I was praying for during this new holiday week.

  It was early morning, and I had just gotten Rex out of bed. He was wearing his blue-gray pajamas adorned with little sailing boats and was still groggy as I carried him to his piano. Playing the piano was the first thing he wanted to do every morning, and I knew any sleepiness would be gone the second his fingers hit the keys. Crossing the living room, I described the world and our movements to him, as you would for any blind child. “We’re passing the big fluffy chair now, Rex, and it’s a beautiful day. The sun is shinin
g bright.”

  “Rex, sweetie, what would you like to do this morning?” I asked my usual question, again expecting nothing back. I was beginning to set him down, even as I was asking the question, when all of a sudden, I noticed his face was all scrunched up. With his lips pasted together, he seemed in the midst of some monumental effort. I pulled him back up to my eye level, asking, “What is it, Rex? What is it, honey?”

  After twisting his face this way and that, his lips finally popped open, and like a firecracker exploding, he said, “Pp-pp-aaa-ooo!”

  I gaped! It was an important moment, I knew that, but I didn’t understand the word, and I desperately needed to get it. “What is it, Rex?” I asked again, practically begging.

  He repeated the same extreme effort, trying with his whole body this time, his head dipping low, before snapping back up with another popping sound. This time it was a little clearer. “PPPaaaano!” His face lit up from his own sound, like he’d just been struck by a bolt of electricity. He’d done it this time, and he knew it! He balled his hands into tiny fists, knocking them together, and repeating with each knock, “Pano! Pano! Pano!”

  It was in that instant that I got it, and I didn’t know whether to laugh or cry, so I did a little of both. I danced a jig, twirling my son round and round, shouting, “Piano, piano! Yes, my sweetheart. That’s it! You want to play your piano!” What a curious sight we must have been—a little blind boy knocking his hands together in excitement and his crazed mother, tears streaming down her cheeks, whooping for joy and dancing a jig, all because of one little word.

  One little word, piano—it was the answer to my question. What would you like to do? He’d clearly understood me. But more than that, it was the answer to my prayers. Because this word “piano,” which tapped in so directly to Rex’s musical soul, had the power to break through any remaining wall of doubt and open up the floodgates of lots of words. Language. Unlike when Rex said “cup” or “up,” uttered in isolation and driven by avoidance, “piano” was a bridge to more. Almost immediately, he began to put words together into short sentences, which were musical at first. The singsongy cadences seemed to make language easier, more accessible to his brain. It was clear that music, with its order and rhythm, had opened up a big door for Rex. Only time would reveal where that door would lead.