Rex

by Cathleen Lewis

  Suzanne hesitated just a moment, and then to my shock and horror said, “I think it’s because he has speech apraxia.” Speech apraxia! She believed his speech was impaired by the same disorder affecting his body!

  No God, not that! I screamed in my mind. Not that word again. But it was out there now; Pandora’s box had been fully opened. His brain was unable to tell his tongue and the muscles in his mouth how to formulate the sounds that normally develop into speech. A new brain/body breakdown, or in this case brain/mouth break-down! But Rex could babble. He could get indiscriminate sounds out of his mouth. But, she emphasized, he couldn’t do it on command, and that was what made her believe he had apraxia.

  All I could do was repeat the words in my mind and rage at the Creator. “No, God, not that!” It simply couldn’t be true, because I wanted more than anything to have a conversation with my son, to just hear him say, “Mama.” He needed a voice to speak, and I needed to hear him speak.

  Rex’s speech therapist, perhaps sensing my disbelief, said she would demonstrate what she was talking about. She set a spinning top on the table in front of him. The top played music as it spun, and she knew this would normally cause Rex to make happy babbling sounds. And sure enough, it did. At the sound of the tinkling music, Rex squealed, clapping his hands in excitement, and spurted out a string of “bas,”—“ba, ba, ba, ba, ba, ba.” She then silenced the toy and said, “Let’s hear you say ‘ba,’ Rex, like you just did.” She mimicked the pronunciation several times, exaggerating “bb-aa,” so there could be no doubt as to what he was supposed to do.

  Rex put his lips together as he should to make the “b” sound, and I was willing him to do it. With lips pasted together, he twisted his mouth in various directions, as if that would make the sound. His face went taut then and his lips pursed, as though the “b” sound was going to burst out. He was trying with everything he had, and I leaned forward as if that might pull the sound out of him. I jumped in. “Say ‘ba,’ Rex, you can do it, sweetie,” and waited, feeling it would come, praying it would come. Another second . . . two, three, an eternity, and then suddenly his face went slack, his voice still silent.

  Rex’s head drooped like a broken doll as he sat there listlessly. The effort had drained him, like a rubber band that had been stretched to its limit and then snapped. It had drained us both. The therapist didn’t immediately break in, presumably out of respect, or perhaps because she felt the strain as well. Silence weighed heavily in the room, broken only by the faintest metallic humming, as though its length was a measure of our exhaustion. Rex made me notice sounds I’d never noticed before, lost as they were for most of us in the crush of life. But his sensitive ears heard everything, often making me seek out the source of potential offenders. I looked up to see what was making the sound, and I realized it was the wall clock, used to keep time for the therapy session. A large round face, with big numbers and a sweeping hand, mechanically ticking away the seconds, keeping the beat of life. Time wouldn’t stop. In that instant, it seemed to be the only certainty I had.

  Nearing the end of my rope, I had nowhere to go but back to the beginning where this whole frantic, confusing search had begun. Back to the Blind Children’s Center and the very room where we’d had the meeting that had set this whole process in motion. Between noncommittal doctors with their business-as-usual attitudes and therapists all seeming to demonstrate endless areas of severe dysfunction, I couldn’t seem to put it all together, to make sense of it. I needed someone to help me connect the dots. I knew the best people to do that were at his school.

  Rex had been coming to school every day, but I hadn’t been back in the educational director’s office since that meeting. Mercifully, thoughts about wheelchairs and sign language were subdued by the adrenaline of the moment. All my energy was focused on my current mission—to make sense of what seemed to be nonsense. Miriam was poised as usual and greeted me warmly. “How are you, Cathleen? How have you been?”

  After exchanging a few niceties, I cut to the chase. “The doctors at Children’s Hospital say one thing. But then the therapists seem to prove exactly the opposite,” I said, my annoyance obvious. I explained to her the new findings in Rex’s brain scans, and how, as a result, he now had a new eye diagnosis. “But according to Dr. Bryant, that won’t make any difference.” I was speaking quickly, venting, in a tone that let her know just how fed up I really was. “I think he said ‘no functional impact.’ Can you believe that?”

  Miriam smiled at me, trying to take the edge off my anger. “I see it with doctors all the time. It’s unfortunate, but they have their domain and we have ours.” She shook her head slowly and leveled her eyes on me, trying to support me with the intensity of her gaze. “Dr. Bryant doesn’t work with the kids day after day like we do,” she said. “So I don’t see how he could know what impact the absence of the septum pellucidum might have.” She was leading me with her logic, confirming what I’d learned in all of Rex’s different therapies. “The fact that Rex’s diagnosis is now septo-optic dysplasia changes a lot in what our expectations for him might be. In our experience working with the kids—children with the brain structure abnormalities like you’re now telling me Rex has—it is much more involved than children with just the eye damage.” She stressed “working with the kids” as the essential qualifying criteria and paused to give me a chance to respond. When I remained silent, she drove her point home in a calmly professional voice. “Cathleen, there’s a big difference between septo-optic dysplasia and optic nerve hypoplasia!”

  There it was! Was that what I’d been trying so desperately to find through explanations, through science? As I sat facing Miriam and heard those words, distraught as I was, I felt an odd jab of irony. I’d just given her validation for Rex’s severe developmental delays in a label: septo-optic dysplasia. They’d handed me their verdict at the meeting, but now I was the one providing the proof, like a double whammy. What a twist! She’d caught the irony too—I read it in her eyes—but there was something else there as well. Her face had softened to an almost maternal look, which said “compassion” to me. Her tone had clearly been professional, but I couldn’t miss the empathy I heard there as well, as if she knew the road ahead would be a very hard one.

  Arriving home, I phoned my son’s babysitter. “Is there any way you could come over and stay with Rex for an hour or so right now?” I asked in a voice tinged with desperation.

  “Is something wrong?” she asked, worried.

  I assured her that everything was fine, but that I needed to air out my brain, to sort out “some stuff.”

  The young lady arrived, and I left the two of them there. I didn’t take the elevators to make the descent to the beach today. That would be too confining, and confinement was the last thing I needed with my head about to explode. I would climb down the steps to the waterline today, all eighty-nine of them, and hope the exertion would help take the edge off the emotions all knotted up inside me. Upon reaching the sand, I was breathing heavily, but I knew I couldn’t stop here. Glancing to the right, I saw the tide was in too far to allow me passage past the rocks on that side. So I took off running to the left, where the sandy beach was wider. As the waves lashed at the shore, my feet were ripping through the wet sand. I ran on and on into an afternoon head wind that slowed my pace but couldn’t stop me. There were no seagulls shrieking over-head today, but I heard them in my mind, egging me on, as my chest began to burn. “Don’t stop! Don’t you dare stop!” And I didn’t, not until nature blocked my way. The tide was just too high this afternoon, and I reached a narrow strip of beach where a mass of rocks blocked my route. I briefly considered scaling them, but saw that, like life, they were too many, too high. I threw myself down, right there in the sand, burying my head in my hands. My breath was gasping and irregular as my jaw clamped tight.

  I just couldn’t get the frustration out, couldn’t get away from it, no matter how hard I tried. It was still all twisted up inside me as I lifted my head from my hand
s, looking upward in a rapid motion. The wind had swept the sky clean, leaving it a deep, vibrant blue, free of any clouds that might have marred its brilliance. But instead of calming me, the flawlessness of what I saw overhead only served to make me madder.

  “God, I don’t want to see any more blue skies!” I screamed. “Don’t You get it? I’m tired of it.” I paused for just a moment as I felt the tears surging in my eyes. I took a deep breath, held it for a second, and with tears of rage spilling down my cheeks, I let the dam break. “And how many perfectly normal kids do You think I need to see every day to get the message? I get it! Rex isn’t normal! But why? I want to know why. And I want to know what he is. Who is he? I thought that by getting information I’d find out, You know. It was supposed to help me see . . . that’s what I asked You for. I want to get it, to get what his life is all about!”

  My eyes were blurred from tears rising from a well of rage I hadn’t acknowledged before. As I shouted up to God, who seemed deaf to my pleas, I suddenly knew how deep my anger ran. First of all, I was angry with myself for the whole mess. I was definitely angry with the doctors and therapists who had led me nowhere. But I was also angry with the other mothers, all those mothers who dared to have normal kids. And if I really wanted to admit it, I was angry with the kids themselves who dared to be normal. But my anger didn’t stop there. It suddenly seemed so clear to me—I was angry with the president, too, and the postman, angry with friends, certainly at strangers in the street. But most of all I was angry at . . . “You, God! You are ignoring my pleas; You won’t listen to me.”

  Apraxia . . . crossing midline . . . bilateral coordination . . . corpus callosum . . . septo-optic dysplasia . . . brain membranes . . . connectors . . . dysfunction, and on and on. I spit the words out like a poison I had to get out before it killed me. My fists were clenched in utter fury. “And autism, God!? I’m blinder than Rex right now!” I shouted, my voice cracking in intensity. But it didn’t stop me as I delivered my last desperate punch, throwing my voice into each word to make it rise up over the waves and linger.

  “DON’T . . . YOU . . . CARE?”

  CHAPTER SIX

  Miracles

  A mother understands what a child does not say.

  —Anonymous

  It was Saturday morning in the park, and I felt as if I had a hangover. No headache, just a feeling of disconnect, like I was watching the kids running in the playground through a haze, hearing their chatter through a filter. Ever since I’d spilled out my heart on the beach two days before, I’d been oddly out of sorts. The information overload followed by the resultant meltdown had left me in this listless state. Then there was Rex. He was anything but listless, bouncing up and down in my arms as I carried him to his swing. I might have seen it as an ironic reversal of roles if I’d had my wits about me, but today there’d be no deeper analysis. All I saw was his excitement, and nothing could dim his expectation that in a moment he would be flying through the air! He loved to swing more than anything except playing his piano. The fact was, he craved movement—all the movement he couldn’t get from his own legs. He loved to be thrown in the air, spun around at high speed, bounced up and down, jostled, thrown over my shoulder and carried like a sack of potatoes, and a variety of other surprising movements when you considered his lack of self-initiated mobility and other sensitivities. His therapists called it “vestibular,” or movements that stimulated his inner ear, giving him a sense of balance and well-being. I just called it “being a child,” especially now. That’s what I needed to hold on to. The rest had quite simply become too much.

  Rex’s face beamed the moment the swing began its gentle arc. I always pushed from the front, so I could talk to him with each push. We played conceptual games wherever we went—I never let up trying to get his brain wires to connect. And for him, the games made everything more fun. So, today, in spite of the general apathy I was feeling, conditioning took over once he was seated, and I began chanting, “Back and forth, back and forth, Rex is swinging back and forth. Oh, so slowly, back and forth.”

  As the swing gained some momentum, Rex’s face sparked with excitement, knowing that soon he would be really moving. “Shall we go high, high, high, way up to the sky?” I asked, like I’d done so many times before. I watched his eyes light up, barely able to control his anticipation. He said nothing, but I knew what he wanted, and so I let rip with a couple of strong, though admittedly robotic, pushes. My thoughts were still in a muddle as I heard my son’s squeals of delight. In spite of myself, the sound drew me into the game, and without warning, I grabbed the swing in mid-arc, stopping his flight with a jerk, surprising him.

  “Uh oh, Rex is caught in a trap!” I held him prisoner there as his squeals turned to deeper, more vibrant laughter. Then I gave an extra-big push. “Rex just got out of the trap.” As he flew backward to the height of the swing’s arc, I added, “With a swoosh!”

  That’s when laughter really took over his little body and, with a power that cut through numbness, it took over me as well. Swooshing and laughing! So, there we were, laughing like we hadn’t a care in the world, caught up in a joy that was attached to nothing but itself and the immediacy of that moment, joy that was oblivious to time and circumstance.

  It was there in the union of our laughter that I finally felt His presence, heard the voice I’d been seeking. It was clearly and unmistakably the voice of God imparting His message. And it was as simple as my son was complex. He was asking me not to lose heart. He was asking me to walk—to live—by faith and not by sight. Walk by faith, not by sight.

  REX WAS still giddy when we arrived home. I was on a high as well, going to the stereo to put on Beethoven’s Ninth Symphony, feeling its “Ode to Joy” was the perfect cap to our morning. It was the masterpiece Beethoven had written toward the end of his life, after he’d become deaf, and Rex was instantly captivated, listening enthralled to the work he had never heard before.

  I watched my son tapping his fingers on his legs, as though he was playing his keyboard, so, when the piece finished, I knew where he wanted to go. Leaving him at his piano, I went into the bedroom. I could hear him play a few notes, then stop, then play a few more, then stop again. Normally he would just let fly with his own melodies and rhythms he created, but today he was oddly tentative. Wondering what was going on, I walked back into the living room. Rex’s face had a faraway look as he picked out notes on the keyboard. That’s when I realized what those tones were when strung together to form a melody. I gasped! It wasn’t a melody of his own this time, a new improvisation. Instead, Rex was picking out the tune to “Ode to Joy” right there in front of my eyes. He’d heard it, and now he was playing it back! Beethoven! My three-year-old, nonverbal, blind son was playing Beethoven’s “Ode to Joy” on the piano! There was mischief in my boy—I could see it in the slight smile that played at the corners of his mouth and the light shining in his eyes as the notes fluttered hesitantly at first, but then rose triumphantly to fill the room. It was in that timeless melody that had spanned almost two centuries that I realized I was not hearing the master Beethoven. I was hearing the voice of a little blind boy singing out. It was Rex. And it took my breath away, filling my heart, filling my soul, with hope.

  How could he do it? I asked myself in the days following his miraculous musical feat. But then I answered my own question—it didn’t matter. The important thing was that he was telling me to believe in him, to not give up. Walk by faith, not by sight.

  It was in that timeless

  melody that had spanned

  almost two centuries that I

  realized I was not hearing the

  master Beethoven. I was

  hearing the voice of a little

  blind boy singing out. It was

  Rex. And it took my breath

  away, filling my heart, filling

  my soul, with hope.

  Two days later, I had Rex in his high chair, music playing on the stereo to distract him from the feeding proce
ss, or the feeding “battle,” as was usually the case. I was diving in with a spoonful of puréed sweet potato in mostly unsuccessful attempts at landing a bit in his mouth, while he shook his head from right to left dodging the invasive spoon. I was worn out physically from the battle, but my heart was still so full from the “Ode to Joy” memory, I thought I’d keep at it a while longer. Today, Rex was so fast, with his head jerking, flat out refusing to open his mouth. Finally, as I sensed he was tiring from the process himself, his head slowly stopped shaking. He seemed wary, on guard, lest I try a sneak-swoop move with the spoon, which would force him back into action. Then, suddenly, to my surprise, he began opening his mouth. I thought I was about to witness a feeding miracle, and that he would actually take a bite of food voluntarily. But just as I was going to push a bite home, I heard a guttural sound lurching from my son’s throat. My spoon froze in midair, as the throaty “c-c-cu” sound came out, with a pop at the end to form the word cup. My jaw dropped, and so did the spoon in my hand, splattering his high chair tray with the orange goop. I was stunned, but then recovered quickly to grab his milk cup and hand it to him. This was not a feeding miracle; it was much more than a few free bites of food in his mouth. This was Rex breaking the chains of his silence—this was his voice. His voice!

  Over the next few weeks, Rex proved he could say “cup” whenever he wanted to. This meant he was overcoming his speech apraxia by demonstrating he could form a word when he wanted to. It also meant he’d found a new power in communicating his needs or desires. In this case, he used it to avoid being forced to eat. Just say the magic word “cup,” and you will be instantly drinking instead. I have to say he became a little cocky, armed with the power of his one word. You could see it in the glint in his eye, as he would instantly throw out his command, “Cup!” And lo and behold, he had instantly halted that menacing army of spoons, loaded with puréed peas or carrots.