Rex

by Cathleen Lewis

  I was tired from the physical effort to get here so quickly, and the pounding in my head was replaced by heavy breathing as I watched the ebb and flow of the tide. Waves smashed on sand and rolled over rocks to dissolve into skirts of frothy foam and head back out to sea, leaving scattered deposits of seaweed in their wake. Tiny ripples, flirting at the waterline, hovered as the larger sets of waves gathered strength farther out at sea. The rhythms of the ocean were ever evolving, ever changing, and yet predictable and measurable.

  As I sat there, I felt the sun beating on my skin as I took in the magnificent horizon, a vast, endless panorama of ocean topped by brilliant blue sky. I’d often come here to find peace in the beauty of nature’s tableau—the flatness of the Pacific beyond the swells, its texture contrasted to the rise and fall of the waves as they reached the shore. The sand, coarse gray and white granules, hugged the rocks and was dotted with bits of sea life—shells strewn here and there, slimy strips of green sea grass, and tangles of golden seaweed. A seagull flew overhead, swooping brazenly down to nip the water at the top of a rolling wave, as though daring the surf to jump up and clip its flight. He cried out, high-pitched and victorious, as he rose up to freedom carrying a fish. I couldn’t help but smile at his aud­acity, but then another sound cut in, plummeting me back to the present—shrieks of delight coming from my side, as though in imitation of the seagull. Rex. Waving his hands emphatically as he let out his happy sounds, he was the picture of joyful glee, completely caught up in the moment.

  How innocent my baby boy was. Innocent and unsuspecting, he never saw any of it, not the smallest grain of sand or the sweeping immensity of the ocean. I bowed my head slowly and let the tears fall.

  ON THE outside, my husband seemed to accept our son’s blindness much more quickly than I did. I simply couldn’t believe that Rex would never see the world. I clung to the hope that he was already developing that vision the doctor had spoken about. I certainly had the impression he was locking his eyes on my face when I held him in front of me. I would parade lights past his face to see if he would react, or I’d place him in front of the mirrors that babies normally love. Sometimes he reacted, and sometimes he didn’t. Rex’s responses were inconsistent and inconclusive, and yet, instinctively, I felt that stimulation was the key.

  “I’m sure he can see a little,” I told William. “I can just tell. What do you think?”

  “He’s completely blind,” he said bluntly, never one to mince words.

  We had gone for a second medical opinion at the Jules Stein Eye Institute at UCLA. This time William was at the appointment. He got to hear the news firsthand.

  “Your son has optic nerve hypoplasia,” a second doctor said, repeating the fancy diagnosis. He had waved a few toys in front of Rex’s face, to which my son had seemed oblivious. “Your son doesn’t react visually to anything, and he’s already close to six months old.”

  I jumped in, desperate. “But the doctor at Children’s Hospital said it’s possible for him to develop some vision over time.”

  “He might be able to discern large objects in time,” he conceded. Just as I felt a door nudge open for me, the doctor slammed it shut with a vengeance. “But will he be able to distinguish you from a horse? It’s doubtful.” His words seemed heartless and insensitive, but they pretty much said it all. Even so, how could I just give up?

  For William, the doctor’s words were a verdict confirming Rex’s blindness. As we walked in silence from the building, I asked him what he was thinking. His words had become few of late. Now he merely said, “The most important thing is that he remains happy.” For me that seemed impossible.

  How could a blind child possibly be happy when he’d been so cheated from the start? Certainly not when he got old enough to realize! I felt such guilt about bringing a child into the world, knowing he would have such a hard fight of it. A friend had given me a book intended to help me take heart titled When Bad Things Happen to Good People. I wasn’t sure whether to take heart from the fact that I could still be a “good” person, and that Rex’s birth wasn’t God’s punishment for past sins, or to sink into the reality of just how “bad” things were.

  IN SPITE of my pain and inability to really accept Rex’s diagnosis, I did realize that information could help. So I took the first doctor’s advice about contacting the Blind Children’s Center. They invited us to come to the Center for an “intake” to discuss future services for our son; both parents were expected along with the child. The three of us made the long trek from our home on the coast to the small, gated complex nestled in the midst of the gray surroundings of downtown Los Angeles. A receptionist greeted us warmly and summoned the school psychologist, Miranda, who would conduct this initial meeting, along with two social workers. They commented on how cute Rex looked sitting in his stroller dressed in his preppie ribbed green pullover and rolled-up corduroy pants, complete with Docksiders he kept kicking off. It might just have been pleasantries geared to keep anxiety at bay. The staff must have known how besieged we’d felt by all sorts of conflicting emotions. Miranda asked us a lot of questions about our family and Rex’s birth. She nodded each time I spoke, paying close attention to every word, counterbalancing my nervousness with her calm and poise. She had a way of looking empathetic and thoughtful while maintaining clear focus and purpose in the meeting. The goal was to determine if it would be appropriate for Rex to receive schooling at the Center. Miranda asked us lots of personal questions, but the one that left its mark was when she asked us what our goals were for our son.

  I had been doing a lot of the talking, but my husband answered this one. “Cathleen and I both love sports. We just want him to be active, to be good at sports.” He appeared as calm as Miranda. I didn’t get it. Not his calm state and certainly not his answer, which seemed disconnected from reality. Didn’t he understand our son was blind? I stared at him as though he was speaking nonsense, all the while being struck by hard truths I hadn’t yet had time to face in the newness and trauma of all this. Rex could never play tennis as I had growing up, or golf as his father did. Yes, of course, we had wanted him to be athletic . . . before.

  Don’t all parents project their own hopes and dreams onto their children, making them future doctors or astronauts? The air hung heavy in the room as I felt so many dreams snuffed out before they’d even begun. Our child’s life was screeching to a halt before even beginning. I felt leaden. Through all of this, Rex sat in his stroller blissfully and mercifully unaware. I was struck by the unsettling impression that my husband seemed just as unaware.

  “William,” I said, cutting in before he could project any other futile goals onto our child, “I don’t really think that’s possible now.”

  Miranda looked from me to William, then added cautiously, to keep from adding even more emotion into the equation, “Rex may not be able to play all sports, but that won’t keep him from being athletic and enjoying fitness, if that’s what he wants.” She paused, then added emphatically, “We work here to help children realize whatever potential they may have, and to discover areas of interest that will help them in life.”

  I had a lot to learn about blindness, and I knew that I needed to open my ears to what Miranda had to tell us. “Ninety percent of what a baby learns is through vision,” she said. “That means there is little incidental learning in the life of a blind baby.”

  Rex wouldn’t be able to watch the world like other babies and mimic it in order to acquire skills. He wouldn’t have the luxury of being a passive learner. Rex would need to be engaged in life because the world wouldn’t come to him through vision. He would need to reach out through touch, through active engaged learning. Rex would have to be “hands-on.” Miranda used the words “purposeful” and “methodic.” That’s what the teaching would be for Rex, and it would need to begin as soon as possible. That was the reality of our son’s life, if I understood the gist of what Miranda was telling us. The task of filling in that 90 percent blind deficit seemed monumental—fro
m where I sat it seemed all but undoable. To make up for what amounted to a horrendous, inexplicable birth defect, Rex’s life would require nothing less than endless work and absolute commitment from all of us. But even with that, how could anything make up for not being able to see?

  It was the tour of the Blind Children’s Center facility and playground that provided me with some desperately needed encouragement. We glanced into classrooms where children seemed to be actively engaged in activities—the classes were all hands-on, colorful, and full of life. In one classroom of four year olds, children were busy unscrewing caps off bottles and then locating coins on a table to put into the bottles. “They’re working on finger and hand dexterity, and tactual discrimination,” Miranda explained. In another classroom, some younger kids were intent on a finger-painting activity. “The paint has granular Jell-O in it to create texture they can feel,” the psychologist said. Then, as we were watching some babies in high chairs sweeping their hands across their trays, our guide explained, “They’re learning to locate Cheerios on their trays.” The bell for recess rang.

  Miranda led us into a yard as colorful as the classrooms. A couple of older kids walked across the playground with their long, white canes stretched out in front of them, guiding them, until they reached the stairs of some playground equipment. They seemed to accomplish the task so easily. “They know the route well,” Miranda said. “They use the edge of the grass meeting that spongy surface under the structure as a spatial indicator.”

  Both students climbed the stairs of the structure in turn, turned to the right, walked across a bridge, and finally turned to the left to a big, winding slide. Just as the first child completed his snaking descent, my attention was drawn to a little girl standing by herself in front of a big pile of fallen autumn leaves—it looked as if they had all been purposefully raked into a pile. They were a mountain of varied orange and brown hues.

  Miranda had been providing program information through-out our tour, and as we stood on the playground she told us, “Our goal in the Center is normalization. By that, I mean providing skills so that the blind child can eventually integrate into a sighted world. In order to help us do that, we have what we call a reverse mainstream child in each classroom. That means a sighted child, who serves as a sort of benchmark, an example if you will, for the other kids.”

  Suddenly the girl in front of the leaves bent down and picked up a big armful, tossing the colorful leaves skyward. As they fell back on her head, she laughed as though she were having the time of her life. I turned to Miranda and said, “That’s obviously one of the sighted children you’re talking about.”

  She smiled, clearly gratified by my assumption, and said, “No, actually, Abby is completely blind!”

  But she looks so happy, I thought. It was a flicker of light that hit my heart—brief, but unmistakable.

  REX BEGAN school at a mere six months! This was none too soon when you think of a “90 percent deficit” looming above his head every waking moment. He was placed in the “Mommy and Me” class, which meant he would learn at school while I was being shown how to work with him at home. The philosophy of the Center is to work with families, not just with children. Their efforts at school were only as good as the parents’ ability to carry through at home. Thus, Mommy and Me—and, theoretically, that would include Daddy at some point. The staff also worked with parents outside the classroom in a forum that was just as vital as learning techniques and methods. It was the critical psychological and emotional forum. They were aware that “new” parents of blind children had just had the fabric of their worlds ripped apart, and they embarked on a mission to mend them, to put them back together, to put us back together. The staff knew the statistics—our children had little hope of overcoming such mind-boggling odds without strong parents at home to support and defend their interests. Broken parents are no good to their children. That’s why Miranda and three social workers were on staff—to help us cope, to help us understand. For me, coping was one thing, understanding quite another. In time, they might help me cope, but I would never be able to understand. How could I understand something so senseless and incomprehensible?

  Rex’s first few months at the Center were very successful. Much better than my own. He had the flexible brain of a baby, while mine was rigid and patterned. He was about getting on with this thing called life, while I was trapped in all my lifelong conditioning about how things were supposed to be. My boy began picking up skills, learning to feed himself with his fingers and explore objects in age-appropriate ways. While this gave me some hope, it still seemed too inconsequential in the overall scheme of things. The big picture—meaning the whole sighted world—just seemed too big and unobtainable. How could Rex ever learn about the immensity of an ocean he’d never see? Or develop sensitivity and harmony in a colorless world?

  At the same time, I was struggling with my own issues—the emotions of severe trauma. The big four, as I learned from Miranda and the Center’s social workers, were grief, anger, guilt, and fear. I was grieving the huge loss of our “perfect” child we’d dreamed of. At the same time, I was angry. Miranda told me that anger was normal because we’d been robbed of something so precious. “Senseless” and “arbitrary” were the words I used, and the phrase “it just happened” filled me with rage. I wanted someone to tell me why it happened. And so entered guilt—guilt that it had somehow been my fault. Did things this bad really happen to good people? At the very least, I felt I’d failed to protect my innocent, defenseless son against something that “just happened.” I suppose the sum result of the whole situation was an overwhelming fear of the future.

  It was a daily battle to make headway against such heavyweight internal stuff, all the more so because Rex’s dad seemed to be able to just go on with life, like nothing of consequence had happened. Of course, work and professional worries insulated William from the day-to-day life I shared with Rex. I had decided not to go back to work. It didn’t seem to make sense anymore; the financial markets I had worked in before with such passion only confused me now. Buy, sell, buy, sell—it all seemed futile and purposeless. Endless repetitions that yielded nothing of worth, not when compared to what repetition would yield for Rex.

  To listen to the staff at the Center, the keys that would open up the whole world for our son were work and repetition to build concepts and gain life skills. Even the simplest task, like feeding himself with a spoon, couldn’t be taken for granted as one might with another child. I learned that without vision there were numerous steps in any process—locate the spoon, locate the plate and its edges, locate the food on the plate. And endless related questions: How do you know what you’ve scooped up with the spoon? How do you know it hasn’t spilled onto the table or the floor, that the spoon hasn’t tilted in midair if indeed it had scooped anything in the first place? How do you differentiate mashed potatoes from peas without touching them with your hands? It went on and on. And that simply meant that Rex needed his mother. I needed to be with my son. So my “workplace” was an emotional battleground. On some days I was buried under the weight of it all; on others, I just allowed myself to love my child.

  It was in this context that Rex turned one. I was determined to bury any conflicting emotions for this day. His first birthday would be a celebration! It was a day for children, and adult “stuff ” had no place in it. I ordered my one-year-old the most beautiful, colored cake with streamers he could touch and a big candle that played “Happy Birthday” when you rotated it. The event took place at the Blind Children’s Center. I had come to appreciate that their specialty was normalcy. Their goal really was to help these kids acquire skills and patterns of behavior early in life so they could be integrated into mainstream schools later on. They worked hard to make every blind child feel normal, and they emphasized celebrations and daily activities that sighted children took for granted. I suppose when Rex grabbed the streamers from his cake and tried to eat them instead of play with them, that was probably a one-ye
ar-old’s age-appropriate reaction. And, perhaps, when he took a big bite of rich, sugary cake and then promptly threw it up, that was also a normal reaction!

  All of this was a powerful and wonderful counterweight to the psychological stuff I was dealing with. In spite of myself, I was beginning to feel more normal as well. It was a fact—Rex’s first six months at the Center were very successful. No one could deny that! As I watched him standing beside his birthday table, I felt pride in my child, who would most certainly be walking far before the two-year-old average walking age for a blind child. There was Rex, already standing strongly. Our broad-shouldered boy would soon be on the move! The teacher smiled as she put her hands over Rex’s hands, helping him rotate his birthday candle to make the candle play “Happy Birthday” again. Cause and effect—everything was a teachable moment. Giddy upon hearing the tune, Rex broke loose with a long string of animated babble. He was “a talker”; that’s what the speech pathologist said, referring to his daily babbling. I couldn’t wait until he would begin to pronounce real words in a few months, so we could begin to really communicate.

  It was very tough to think of my child being deprived of sight, but in the months since Rex had come here, I had to admit that I was beginning to feel blindness really could be overcome. My son would not only be able to enter into the mainstream, to be “normalized,” as they described the process here, but he could even excel in the “real” world. Signs were certainly looking good, and by now I’d read about Helen Keller, who had lived an exceptional life being not only blind, but deaf too. I believed Rex would be like that, blind but a high achiever even by sighted standards. Indeed, he had gone about his first year of life with energy and enthusiasm, like he was grabbing at possibilities. He was curious and pretty good at just being a child. His joy in living was contagious. When he laughed with pure abandon, it could light up a whole room, as it did now, with his teacher helping him turn his birthday candle one last time. A sign, a very good sign indeed.