His classroom teacher was the first to speak. “Of course, we’re happy Rex’s piano allows him to relax. Given the complexity of his sensitivities, that’s very important for him to be able to get through the day.” A slight pause, and then, “But we have quite a few other concerns about him. We’re concerned there’s not more progress.” I had no external reaction, although my insides were churning.
Miriam cut in, relieving the teacher. “He hasn’t had a single operation or hospitalization this year, and he’s still not progressing,” she said. My eyes bored into her as no one in the room dared to breathe. Everyone was still, surely in deference to the assessment they all must know to be forthcoming. “He’s still inconsistent with his walking. So it doesn’t look like his overall lack of mobility, and his periodic regressions, are linked solely to his medical issues.”
I was being stripped of my armor of denial, of explanations, of excuses. Was that it? Had I just become adept at making excuses? I knew his progress had been slow in the making. I knew that Rex had started walking only to stop several times in the space of six months. And of course I knew all about his “spaghetti legs,” my great nemesis. But each time he had started walking again, I had renewed hope that he would continue. He would outgrow sensitivity in his feet and any childish obstinacy thrown into the mix. It had to end. There was no other option, since he would soon be too heavy for me to carry. He was now three years old, and though he hadn’t gained an ounce in his second year, his third year had been different. In spite of his ongoing resistance to food, patience and ingenuity during feeding, along with lots of protein powder added to his milk, had set his growth back into motion this past year. But suddenly I felt the weight of each of his hard-earned ten pounds. “It’s just a pattern,” I threw out, grasping at straws. “It can be broken.”
The occupational therapist responded. “We’ve seen this pattern of behavior continue on into adolescence.” I heard the words but didn’t immediately grasp their import—they were mere words banging on my brain, devoid of meaning, disconnected from reality. “Rex is getting heavier by the day.” Her implication should have been obvious, and yet it still escaped me until a single word hit me head-on—wheelchair! Rex could end up in a wheelchair! I locked on the phrase “getting heavier.” It was true. Rex was getting too heavy. As I pictured myself struggling to carry my son, refusing to give in to using a wheelchair, the meeting was moving forward.
I was just going through the motions, nodding to signal understanding, acquiescence, all the while pulling myself inside, hiding behind a protective layer of cloudy consciousness. They were education professionals—clear, concise. They knew their stuff, and they were moving on with the meeting, reading from a painful script. Now the speech pathologist was discussing Rex’s communication skills. My mind was drowning; I couldn’t keep up as I heard her say, “Rex isn’t speaking yet; he hasn’t pronounced a single word.”
“Not yet,” I jumped in, half affirmation, half plea. My voice had cracked with emotion. His piano had become his way of communicating. His voice would soon come too.
“Yes, but Rex is three years old,” she said gently. “He needs to begin to communicate in some way.” She paused heavily. “In whatever way he can, even if it’s nonverbal,” she added. For me, her voice rang with dissonance, as though trying to infuse hope into a hopeless situation. I remained silent, once again struggling to follow the gist of her words. “We’d like to work with him on using his hands to speak, teach him some sign language.”
Nonverbal, sign language, wheelchair! They were concepts broached with care, but the words themselves were not cautious words, and to me it felt like a barrage.
“Teach him sign language?” I asked in disbelief. “But he’s not deaf!”
“But he is nonverbal at this point,” Miriam said, then added, “and three years old.”
Just the beginning of his life, I thought. This time my own thoughts were dissonant as I heard her go on. “Three years is a very important stage in child development.” Patterns could be set for a lifetime by this critical age.
Miranda had her eyes glued on me as I sat there mute, as though she thought I might crumble at any moment were she to look away. And with good reason, because apparently the jury was in. Here. Now. The developmental alarm clock had just gone off. Three years! Was Rex’s die cast with the verdict that had just come in? Part of me wanted to cradle my head in my hands and cry, “Why me? Why Rex? What had we done?” And part of me wanted to stand up and scream, “Foul!”
But I only reacted in the deep recesses of my mind, and I didn’t counter their dire prognosis. Instead, I listened numbly to their reports of their research into optic nerve hypoplasia. Children with this specific eye condition had some shocking commonalities—a whole slew of kids with spaghetti legs! Walking was invariably an issue with these children who had the condition. Rosemary, the vision specialist, said, “I’ve been reading about a lot of case studies documented on the Internet. Parents of kids with optic nerve hypoplasia like Rex hoped and hoped and hoped until they finally gave in. Ultimately, they admitted and accepted the inevitable.” I understood the inevitable would be a child too heavy to carry, a child in a wheelchair. And more. But then she couched it in a subtle nuance, attempting somehow to soften the blow. “I’m not saying Rex will necessarily be like that, but I want you to know what information is on the Internet, in case you come across it yourself.”
I’d been running a race against time for three years, a life-or-death race; that’s what it felt like. Patterns are set for a lifetime. Never stopping to take a breath, for fear Rex would lose critical time. Since the day my baby had come into the world, I’d been trying somehow to bring safety to his unsafe world, exhorting God, pleading on Rex’s behalf. But now the specialists were telling me I’d been running a losing race against patterns! A losing race against his brain structure because Rex’s brain was stuck in a rigid pattern of nondevelopment. His wheels were spinning in place, going nowhere. Was that it? I was swept up in a current of violent, uncontrollable despair. I was babbling in my brain, and yet managed to respond coherently.
“Thank you for being so honest and forthright with me,” I told the group. “Having all the information is important,” adding a comforting banality, the simplicity of which acted as a counter-balance to the growing wave of complex and confusing emotions that had just caught me in their riptide.
“As far as Rex’s placement here, we will definitely have a place for him next year as we’ve told you,” said Miriam. “After that, we’ll have to see.” It meant his final year in preschool at the Center was at risk. If his development didn’t take off, he’d be out by the end of his fourth year of life.
The Center didn’t have the staff to work with children over three who were nonambulatory, and so normally kids didn’t even receive placement in their fourth year if they couldn’t walk. Rex had somehow managed to make the cut this year—perhaps due to the fact that he would sometimes walk. “There’s no physical reason he’s not walking,” I heard his physical therapist say, not so long ago. “His muscles are fine, a little hypotonic, but all in all, they’re not keeping him from walking.” But what was keeping him from walking? I wanted to scream. What was making his muscles collapse all the time if they were strong enough? What was keeping him from talking? No one ever seemed to have any answers.
As the meeting concluded, Miranda told me she would be available anytime I needed to talk. “Thank you,” I said woodenly. The others had already rushed off to their other duties, perhaps purposefully avoiding any potential emotional fallout, leaving me there with the psychologist and educational director.
I stood up to go but I wasn’t sure exactly where to go, as frantic thoughts began pouring in on me. I just knew I needed to get out of that room, fast. I put one foot in front of the other and just moved, until I pulled myself together.
I walked out of the office, murmuring my good-byes and thank-yous. Miranda uncertainly watched me go. I approa
ched the stuffed bear, feeling the brightness of the day streaming through the window. The classroom doors were closed now that class was in session. Life goes on—a continuum—at once insensitive and reassuring. For once, I didn’t press my nose up to the window to spy on Rex. I had to keep going, one foot in front of the other, eyes up toward that window. I needed to get some air, to figure things out. I would have liked to float away, shed the weight of responsibility, be a child again.
Be a child again . . . I stared down at my sleeping son’s face, so unaware of the high-stakes meeting that morning to discuss his future. But I was aware of it in every fiber of my being as I collapsed into the rocker next to his bed. Far from feeling like a child, my body was deadweight, drained, like I’d aged ten years in a day. How do you go on when even a monumental effort seems it is for naught? When everywhere you look it’s pitch-black darkness?
I shut my eyes and massaged my temples to relieve pressure pounding there—an imminent migraine was building. I gradually became aware of a sound—like a barely audible tapping on a door slammed shut—soft, gentle, but insistent. It was there to stay. Rex’s breathing! In and out, so calm and even. As my fingers applied more pressure to the sides of my head, I began rocking slowly in my chair, like I was hypnotized, allowing his breathing to soothe me. The most primal rhythm of life goes on. I remembered his gasping, labored breaths in the first weeks of his life before his operation—how he’d slept at my side, how I’d been scared to fall asleep for fear he’d stop breathing, for fear he’d just be gone. Inevitably, I had to let go each night when my body was overcome by fatigue, falling asleep against my own will. But each morning I would awaken to find him still alive. A force infinitely more powerful than his mother had protected him. I knew that, somehow.
As I allowed my mind to relax, I heard another sound, a new rhythm to layer upon my son’s breathing. This time it was coming from outside. On the beach, waves rippled against the shore in a gentle caress. It was another of life’s rhythms—its own soft lullaby. Suddenly the distant cry of a seagull called out, cutting in. Was he flying solo, somehow separated from his flock? His high-pitched cry resonated strongly with some internal cry of my own. I opened my eyes to see Rex’s face aglow as moonlight streamed through the parted curtains and softly embraced his cheeks. The essence of innocence.
Against all odds, my
mind was taking refuge,
finding rest even, in the one
absolute in our lives—the love
I felt for my son, sustaining
me now in the darkest hour,
by what I knew could only
be the grace of God.
I still didn’t know what the future held. Would Rex be like that seagull crying out solo in the night, or would he rejoin the flock one day? The questions were still there, maybe even bigger now. Surprisingly, I didn’t feel assaulted by fear. Against all odds, my mind was taking refuge, finding rest even, in the one absolute in our lives—the love I felt for my son, sustaining me now in the darkest hour, by what I knew could only be the grace of God.
CHAPTER FIVE
Searching for
Understanding
Not until we are lost do we begin to understand ourselves.
—Henry David Thoreau
The sanctuary was empty and silent as I sat with Rex by my side. Scant wisps of late-afternoon sunlight resting on the pews to my right provided the only illumination in the otherwise darkened room. I’d never come here during the week before, but upon returning from our day in town, I had felt the need to be in this holy place. I wanted to sit in silence with no pastor’s words filling the room, with no Sunday congregation lending a social presence. I just wanted to tune into the spirit of God directly, thinking that perhaps I could hear His voice more clearly this way, by filtering out intercedants, interpretation, noise.
Turning to Rex, I smiled and said softly, “Noise. Just like you sweetheart, gotta filter out the noise.” I’d had enough “noisy” interpretations at the Blind Children’s Center meeting, the sting of those words still ripping away at my insides when I thought about them. What I needed was to get those awful words out of me. So I would speak them here, out loud, and in doing so, share them. In essence, I would hand them off in the hope there would be solace in that.
“Rex is still not walking, Lord . . . or talking . . . or . . .” I paused heavily, then just let it out, “or doing much of anything.” Sighing audibly in release, I bowed my head, hoping to hear a voice other than mine, beyond my own thoughts, a voice of guidance. But nothing came.
As I sat in silence, my mind was forced to consider thoughts of the week since the meeting. We had gone about our lives as usual, in part from not wanting to disrupt our routine and in part for not knowing what to change. But in spite of keeping to our normal schedule—mornings at the Blind Children’s Center; speech, physical, or occupational therapy in the afternoon; and piano for Rex in every free moment at home—I knew that some-thing needed to be done. We couldn’t just go on as before, as if nothing had happened. But I was at a loss.
What I had been observing in the wake of the meeting was my own emotions. These were the emotions I’d lost track of for some time, immersed as I’d been in all of Rex’s stuff. But the meeting had jarred me, and the trauma of it had caused me to look inside myself. I was beginning to see there was an internal divide. It wasn’t as obvious as Rex’s own dual nature—between the child who played the piano with such absorption and creativity and the child who moved so randomly everywhere else—but it was definitely there.
My duality might be defined as how I dealt with Rex’s disability—between how I felt at home with my child and how I felt when we were out in the world. Alone with Rex, I rarely experienced the weight of his disability as I had in the beginning. That was the love he inspired, like on that night after the meeting. Yet the old pain came back frequently when we were faced with other people doing the normal things of life. Daily triggers reminded me that the world at large remained a painful place. Painful for Rex, certainly, with his sensitive ears, I knew that all too well. But now I was beginning to realize how emotionally painful it was for me too. My emotions were just too sensitive, too fragile.
A child’s hand reaches out for a brightly colored box in a supermarket; the child smiles up at his mother. I see it and my insides knot up as I rush off down the aisle with my son, whose own unseeing eyes remain oblivious and downcast. Children are building castles in the sand or trotting along the seashore searching for shells as I push Rex past in his jogging stroller. When I compare Rex’s situation to theirs, it only serves to amplify the divide between Rex (and me) and the rest of the world.
The other morning it had been kids on a playdate in the park running between the slide, swings, and the monkey bars, while their moms sat on the park bench chatting.
“I’m exhausted all the time,” said one mom. “If I turn my back, Tommy’s off and into some new mischief.”
“Lisa likes to hang around me, so she doesn’t tear things up,” replied the other mom sharing the bench, “but I never knew a three-year-old could talk so much. ‘Give me this. I want that.’ And the questions! She always wants explanations for everything.”
That was enough for me. In fact, I knew that generic conversation by heart—the same words spoken by the other mothers I used to meet in this very park, before I had given up on the concept of the “playdate,” at least for the time being. Back when we used to accept them, these dates had always consisted of the same thing—the other mothers sat around comparing child stories while their kids played together, kids who always seemed to be fast and curious. The world was made for the fast and curious, and the world certainly had them in abundance. Rex was neither. So on those gettogethers I would always be with the kids, not the moms, helping my son to play, to swing, or to slide, helping him to interact with his environment in the most basic ways.
On that day, the oh-so-familiar, tinny voices of the young mothers faded away with their
complaints ringing in my ears as I carried Rex over to one of the secure baby swings. My blind child’s playdate was once again with his mother, as it had always been. He couldn’t play without help. I could never experience the joyful normalcy of being a mom who sat on a bench watching her child.
I opened my eyes and raised my head to the altar. “I know You must have a plan for Rex; I do,” I said simply but resolutely, letting the impact of the words settle into myself. There must be a reason for all of this. “I just don’t know what it is. I just don’t. So I’m going to need Your help.” I paused in reverence, humbled, knowing only that this was where I needed to be. “Help me to see, Lord.” Help me to see. It was the first time I’d prayed for anything other than direct healing for my son.
OVER THE next month, I found myself returning to the academics that had been so important to me before Rex was born. I felt if I got to the bottom of it all, then there would be a scientific explanation, a reason, to guide me. My quest for knowledge resumed, sparked by desperation and fueled by my need to see, my need to know.
The logical place for me to start was the medical world, with the doctors, in the hopes that their expertise in the brain and body would give me some answers. Since Rex was part of the Children’s Hospital study of optic nerve hypoplasia, a study that was geared toward finding answers about its cause and future consequences, I went to see his ophthalmologist there, Dr. Michael Bryant.
Dr. Bryant was busily jotting down notes on a notepad as I walked into his office, reminding me of the day I had first learned of Rex’s blindness. Surrounded by the tools of science, assorted lenses and lights, and the inevitable ophthalmoscope, the doctor seemed in his element. He was immaculate and preppie, wearing a dark suit, a striped shirt, and his trademark bow tie and spectacles, his hair carefully combed. He looked every inch the intellectual he was reputed to be. The doctor looked up briefly as I sat down, but then he held up his hand, a gesture for silence, as though imploring me not to interrupt his thoughts. It was a request to give him one last moment to jot down one last vital note before he had to shift gears to focus on Rex and me.
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