My spirit, on the other hand, was quite the opposite of dead-weight. In fact, it was downright light, at least in comparison to what it had been. Rex’s endless hours at the piano provided a respite for both of us and began to lift the oppressive yoke of his second year. Normally abrasive-to-Rex sounds like running water and a ringing phone didn’t affect him at all when he was at the keyboard which provided a temporary override to dysfunction. Playing that thing was what he wanted to do first thing in the morning, and it was what he wanted to do even when his body couldn’t do it anymore. I wasn’t a musician, but I knew what he was playing was musical, rhythmic, and full of life. After the darkness, the absolute desolation of that second year, it was like a bright light shining down into our lives, like a rebirth. Gradually, a new sound began to resonate through our home along with his music—it was Rex’s laugh. It was as if he was defying his condition. I thought it was like a touch of grace.
As the months wore on, his days at school were still hard work even as his home life was one of ever-increasing lightness. I suppose you could say there was now a growing divide in his life, a dichotomy between the ease and harmony he felt at the piano at home and his struggle to overcome all the rest. He would use his hands beautifully at the piano, developing a rhythmic dexterity, but he still wouldn’t use them much elsewhere. He had made gains in a number of areas, but progress was slow and labored and still filled with upset for him, his teachers, and me.
It was June, shortly before his third birthday, and he’d had a mixed day at school, meaning tough but manageable. The finger-painting activity his classmates had reveled in first thing in the morning had set him screaming. I watched as a little boy named Manuel voraciously rolled and swirled his hands in gooey wonder, and I hoped Rex could do the same thing, praying on the spot for a miracle. Rex’s teacher helped him find the finger paint in a sort of drumming pattern. “Look, Rex, it’s not finger painting. It’s just drumming!” Up, down, up, down, rat-tat-tat-tat, over and into the goop! It worked; he hadn’t balled up his hands. Music could be used to get him to do things that were otherwise impossible. I used the technique at home, and now his teachers had begun using it here as well. But as soon as the drumming pattern was broken, and he discovered his hands in the paint, it was as if his whole nervous system was once again being assaulted.
Mercifully it was music time, and he was able to recover. As usual, he excelled in his clapping patterns to the songs and humming the tunes. It wasn’t real humming, but a sort of chorus of “ahs.” He couldn’t pronounce any word, but it seemed he could voice a chorus of “ahs” to any song, and in perfect pitch.
I still carried him around most of the time, or the teachers did, but—inspired by the music—he had managed a couple of steps. But then he would immediately collapse his legs in what I had come to call his “spaghetti-leg” mode. Six months before, I had believed that God was answering my prayers when I witnessed Rex taking his first miraculous, independent steps. I had celebrated, throwing my arms around “my little walking boy” and doing my happy dance! But the celebration had been premature because Rex’s first steps didn’t develop into a consistent walking pattern like most kids, but instead into an on-again, off-again pattern. One day I would believe he was building strength and balance, but then the next he’d be back to square one, his legs buckling the moment I’d stand him up. On the bad days, I tried not to let it get to me, focusing on the fact that I’d witnessed his ability to walk, even if it was still hidden much of the time.
Rex’s school day was capped by lunch; for him it was a “good food day,” laughable by any standard but his own. “Good” meant he’d managed to consume about an eighth of a cup of puréed sweet potato, but only when the occupational therapist smeared it on his lips, obliging him to lick it off to clean his mouth. Rex would not eat voluntarily and would normally jerk his head away from any spoon that would dare to touch his lips. It was like he was “threatened” by food. To counter that, the therapist would put the food on her finger and rapidly smear it on his lips before he could dodge away. Once on his lips, his tongue would sneak out slowly, testing, licking bits off. A labored process, but on a good day, like today, Rex would actually consume the food he “found” with his tongue. As a scene on TV, it would have been humorous, but as a mother watching her son fighting a life-sustaining process, it was hard to take.
His days at school were intense; there was no denying that what seemed like child’s play was work for him. But now I watched him in our home, content at his piano, oblivious to the inspiring ocean view out the living room window. The sun sparkled in allegro on the surface of the water and seemed to mirror Rex’s light notes as they cascaded up the keyboard. I so enjoyed living beside the ocean, with its unimpeded horizon. Only the island of Catalina was out there sticking its head timidly through a translucent skirt of mist. No June gloom today, just the leaves of palm trees flickering in a gentle spring breeze. Rex had extended his arms to the very extremities of his keyboard, like he was embracing the world, a world as vast as what I could see out the window. He kept his arms spread with one index finger at each piano extreme, playing them back and forth—high, low, high, low—over and over again, a look of rapture on his face. Then he slowly lifted each finger to touch the edge of the piano, as if to verify it really ended there. He often made piano runs up and down to the ends of the instrument, and I wondered whether it was to fix boundaries in his own mind or to test them. I had noticed his intrigued look the day I played a Chopin nocturne for him on the stereo—it clearly had notes not contained on his own miniature keyboard. Where were the missing keys? Chopin’s sky-high trills were clearly nowhere to be found on his little forty-eight-note piano! Testing limits, pushing back limits. Wasn’t that the essence of childhood? And order! Rex seemed to be creating order in a brain that was otherwise filled with chaos and dysfunction. Endless runs, methodology, intervals. He went about playing his piano with the same absorption I witnessed when he was listening to Mozart.
His fingers were still stuck to the ends of the keyboard, and I said, “Beautiful music, Rex.” My voice startled him out of his absorbed state, and his fingers darted back into motion. On a typical day, as I watched the ebb and flow of the ocean tide, he would create endless musical tapestries. Sometimes playful, sometimes majestic, always rhythmic and constructed, which stood in stark contradiction to the disconnected and random child I’d see at school. Rex was creative—it could be seen all too clearly in his music. He was curious, and he could learn. He would learn!
I looked back at him, as his hands opened up on the keyboard, moving once again to its edges, its limits, as if he wanted more. More notes? Or just more? Why couldn’t we push past those limits? Crash through those boundaries? Extend outward to the world?
CHAPTER FOUR
The Meeting
All journeys have secret destinations of which the traveler is unaware.
—Martin Buber, biblical translator, philosopher, and interpreter
We rushed through the gates of the Blind Children’s Center complex, once again late, in spite of my efforts to get us there on time. The other children, who didn’t have as far to commute, were all seated on blocks in the green, grassy playground, shaded from the already-scorching sun by a couple of large trees. It was summertime, and there was a feeling of lightness in the air as I watched the kids singing their good-morning songs.
The teacher made room for Rex next to one of his classmates, and I carried him to his seat as the children continued singing. I studied my blond boy, looking so handsome in his black polo shirt and khaki shorts, clapping with impeccable rhythm, never missing a beat. Suddenly, two of the older children, Ellen and Carson, stood up. They held each other tightly by the shoulders as the next song began. They circled round and round to the tune of “Ring Around the Rosy”—preschool rock and roll! Both were blond and beautiful—older versions of Rex.
As they came to the lyrics “ashes, ashes, we all fall down,” the kids dropped to the gr
ound to Rex’s drumroll clapping. There were giggles from the children, and I turned to go inside. Time for my meeting; I had been “invited” to meet with the educational director of the school to discuss Rex’s progress. Just as I was stepping into the hallway, a familiar sound hit the airwaves. Like a thousand-megawatt bulb, it lit up the playground—the laugh! Rex’s astonishing, infectious laugh probably brought on by escalating giggles. I turned to see my boy, full of life, his face still wreathed in a beatific smile special to him. I couldn’t help but smile myself as I left him with his schoolmates.
I stepped inside the schoolhouse, which was as bright as the outdoors. The office of the educational director, Miriam, was at the far end of the brightly lit corridor. On one side of the hallway sat a big stuffed bear, more voluminous than most adults. He was perched on a softly cushioned bench in front of a window, through which streamed the brightness of this summer day. The bear, dubbed Barney the Bear, felt like a friend; he was a sort of cuddly greeting card welcoming visitors to this entrance hallway. He was an expensive animal, not because of exquisite design or exclusive fabric, but because each year he was purchased at auction by some generous benefactor of the school, who was willing to exchange hundreds, even thousands of dollars, for the right to say “I care.” Buying this particular bear didn’t confer ownership, but it did buy the right to have your name sewn onto the belly of this oversized guardian alongside all those other caring people’s. Annually auctioning the bear was an institution in this private preschool for the blind, which only managed to keep its doors open due to such financial generosity. We, the parents, were not asked to pay a dime for the right to be here. This was very fortunate, since most of the families had taken quite a hit financially. Like any severe disability, blindness hits families in every area—emotionally, practically, and financially.
Facing the bear were three classrooms, shielded from the curious eye of the casual observer by relatively opaque windows. If you wanted to watch the kids in these classrooms, you had to practically glue your face to the window. This was not at all a discrete posture, mind you, but I had personally been known to do the face press on numerous occasions—no withering violet, this mother. Being faint of heart was not a luxury I could afford, having Rex for a son. Now, however, the doors to these rooms were open because they were empty. For once, I could gaze casually inside as I walked past. The room had bright colors as a backdrop, with multiple varied textures on the walls and floors. There were real objects to touch and to be used to teach themes, and in the corner of Rex’s classroom, a little piano keyboard. I had brought it in for him to use if he needed a “collect yourself ” break. I also wanted the teachers and specialists to see how nicely he used his hands on the piano keys. I hoped the skill would be transferable.
While children were outside, the bear was keeping a silent vigil awaiting their imminent return. In spite of the brightness of the décor, the absence of the kids’ joyous voices caused the place to seem oddly hollow, a body without a heart, something unsettling as I listened to the sound of my own footsteps echoing off the walls. What was the matter? I was only going to meet with the educational director of Rex’s school, who had asked me to come see her to touch base on his progress. This was something Miriam and I had both agreed would be a good idea from time to time. And, since it was the beginning of summer school, what better time to do it? Far from being unsettling, for me this meeting promised the opportunity to share ideas concerning Rex’s day-to-day education and my visions for his future. A child his age needed consistency, which meant synchronizing my own efforts at home with those here at school; working together was the key.
The door to the office stood ajar, and as I approached, I could hear hushed, subdued voices within, which seemed out of place here at the Center, where each word was always so clearly weighed and enunciated for the children. As I pushed the door open, I was surprised to see not only Miriam’s face but also the director sitting among five other members of the school’s mostly female staff, each an expert in her field. As I looked around the room, I noted the familiar faces I’d known since Rex was barely six months old. They were my friends; they were his friends, his teachers in so many different disciplines. They’d known him from the time when we’d first come to the Center.
I entered the room to face these educators, who had become the substance of our lives for these last two and a half years. Though it had been an association forged by necessity, they’d been there to help when there was no one else, had helped me cope with a broken heart and a broken child. They’d provided a safe place for my son and me, where we could both recover and grow. I felt I was in the company of friends. All eyes were on me, and we all murmured greetings as I found my way to the sole seat that had been left vacant. They had saved me a chair facing everybody else.
Still, I was relaxed, although surprised by so many participants in this “routine” meeting. I did, however, question the reason for Miranda’s presence. Why would the school psychologist be at an educational meeting? On that first visit I had been impressed by the idea of a school having a psychologist for preschoolers, and I vaguely remembered even having joked about it. But, of course, Rex wasn’t the one who needed psychological help in all this. He’d been just a baby then; now he was but a child, with a child’s expectations. He was innocent, blameless. No, Miranda had been here for me, on that first day and on all the days since. The school psychologist was there to teach parents how to lift our chins, to get on with life, to reestablish eye contact with the world. Being in charge of all the parent-related issues, I could only assume she was here today for me. What that meant, I wasn’t exactly sure, but I refused to give in to old feelings of anxiety, and remained calm. Eyes up, straight ahead. My breathing remained even. In and out, in and out, it felt so comforting in its predictability.
Once seated, I took out a small notepad, which was more a security blanket than a means to jot down points under discussion. Miriam focused her whole attention on me, with one of her signature melt-the-iciest-of-hearts smiles, which always seemed to say, “You can trust me; I’m on your side,” or “I truly know how you feel.” It was a smile of empathy, sympathy, and compassion, and Miriam always seemed to exude warmth and understanding. She was highly organized and ran the school with precision, and yet she always managed to carefully dose her efficiency with a large amount of heart and caring.
Her calming presence massaged away any residual tension I might have been feeling, and I was at ease as she spoke directly to me. “I’ve asked everyone who is involved with Rex to come to this meeting,” she said. Holding my gaze, she went on. “As we decided before, I feel it’s a good idea to touch base from time to time about his progress at school. So, each person who works with him will explain to you how she believes he is doing.”
I allowed her words to soothe me, reassure me. I knew full well how my son was doing. He had finally stabilized. Things were turning around at long last—his piano had been the key. I mentally checked the image of the keyboard in his classroom—progress, slow, but the process was beginning.
As Miriam spoke, everyone was completely silent, watching me tentatively, expectantly. All the while, Miranda’s attention was focused on me. Her look was attentive, but noncommittal. She was a listener, a trained professional, who knew how to read a parent’s feelings merely by the way he or she sat or held her hands, or by watching any eye movement. Miranda missed nothing, said or unsaid.
I spoke before anyone else could. “I’m so happy to be able to meet with you all like this. It’s important for me to know that what I’m doing at home is right—that it will support what you’re all doing here.” Not waiting for a response, barely stopping for breath, I continued. “I know how much we all need to be working together to get Rex on track. And I have to say how excited I am about how he’s changed since he got his piano keyboard last year.”
I glanced around the room, expecting them to mimic at least part of my enthusiasm. Instead, what I felt was their discom
fort. Maybe it was their body language, the uncertain shifting as I spoke, the eyes filled with sympathy, all focused too intently upon me.
I was Miranda’s pupil; indeed, I’d come to call her “coach,” as life with Rex was oddly akin to a competitive sport. She was here at the Blind Children’s Center to teach us parents how to hold our own in a world made scary by our children’s births, how to come to terms with frightening emotions, and how to deal with complex medical and educational situations. Simply put, she had taught me about the subtleties of true survival in the world of “special needs.” It was from her that I’d learned to read situations in much the same way she could: by going past the spoken word and paying attention to body language, giving importance to all those little external clues people give off—their posture, the sideways glances, eye contact or lack of eye contact, telltale fidgeting. I had learned to glean information that way. And here in this room, on this sunny summer morning, my internal alarm was suddenly sounding.
“Yes, we do all want to be on the same page,” Miriam said hesitantly, a dubious validation.
So what page were they on? Each person present, except Miriam and Miranda, sat with notes on her lap and probably with many pages of observations stored in each of those specialist heads. I had a sudden urge to run, and yet my body felt leaden. I somehow knew how potent their words would be. Huge words, with huge implications. Lethal and unforgiving words. I braced myself for the impact.
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