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RexA Mother, Her Autistic Child, and the Music That Transformed Their Lives
By CATHLEEN LEWIS
Thomas NelsonCopyright © 2008 Cathleen Lewis
All right reserved.
Fear not that thy life shall come to an end, but rather fear that it shall never have a beginning. -John Henry Cardinal
I was pregnant-very pregnant. I looked down at my belly and hugged it ... and him. We knew it was a he; rather, "he" was a boy. I'd get it right. We'd give him a name soon, but it had to be the perfect name. Anything less would be, well, not quite perfect. My husband, William, and I had both wanted a boy, William being South African and macho, and me being-or rather having been-a tomboy. Admittedly, I was still quite in love with sports and my husband and the world! I was giddy, that's the word. I was foolishly, schoolgirlishly giddy! Three weeks from delivery, and I was in this growing state of excitement, of anticipation that was growing with my belly, growing with the little boy who had my profile. The ultrasound had captured the image of my pug nose-it was unmistakable. That's when the beautiful reality had really struck home.
I knew that much of this euphoria was because I had waited so long to have a child. Thirty-six is not old in absolute terms, but it felt so in baby-bearing years. And it was in my thirty-sixth year that the ticking of my biological clock had begun to resound louder and louder, gripping me like so many women around my age. Fortunately for me, I was also a newlywed. After being wrapped up in my professional life in France for twelve years, I had moved home the year before and had met the man of my dreams. He had just arrived from South Africa, here for a week on business; and because I'd lived abroad for so long, it felt in a way like we were both foreigners. Meeting on a typically sunny day in Los Angeles, there had been something fateful in our instant bond. It had the smack of destiny. I knew that was the stuff of romance novels, not real life, but in a world this big and random, that kind of chance meeting had to be written in the stars.
I sighed a contented sigh and hugged my tummy again.
It had been such an easy pregnancy. No morning sickness to speak of, and my Lamaze training had me fully confident the birth itself would go just as smoothly.
That's why the phone dropped from my hand as I heard the doctor's words through the line. "The ultrasound shows the presence of a suspicious mass in the brain of the fetus." I felt a sharp pain grip my belly. Or was it just in my mind? I'd had my appointment that morning, and the doctor had reviewed the scan right in front of me and had said nothing! No, the opposite, in fact-he'd been all smiles. That's why I'd been on such a new mother's high all day! And now he was dropping this bombshell over the phone? The doctor explained that he'd wanted to look at the film more closely before advising me. That was the reason he hadn't said anything.
"It wasn't there a month ago," he went on, as though that might console a soon-to-be first-time mother about the fact that there was something "foreign" in her baby's brain. I knew it hadn't been there a month ago. What did he think, that I would have forgotten that little bit of news? That I would have remembered my baby's upturned nose but not the "suspicious mass"? I tried to calm myself down so I could just listen. But he didn't have anything more to say. He couldn't tell me what the "mass" might be. More extensive ultrasounds were needed to determine that. And they needed to be done immediately.
After a battery of more detailed imaging, a conclusive diagnosis was made-the mass was an anachroid cyst. That's what they said was in my baby's head-a gigantic, fluid-filled cyst. "It's benign," a new doctor said, this one in charge of high-definition imaging at Cedars-Sinai Hospital. The word "benign" was meant to be a reassurance. I knew that, but I was only partially relieved because I was confused by the terminology. I struggled with that word being used to describe something that filled up a quarter of my baby's head and wasn't supposed to be there. In practical, nonemotional terms, the doctors told me it meant it wouldn't endanger his life. Although I needed to deliver him quickly, the doctors could wait a few weeks to operate-critical weeks that would allow him to gain some weight, some resistance, before undergoing what would be an invasive surgery.
I consoled myself with the fact that the problem was repairable. The doctors had even told me there are adults who have lived their whole lives with cysts in their brains without even being aware of them. I was lulled into the idea that the thing really was innocuous after all. A problem that simply had to be dealt with. Once the surgery was over, we could get on with our lives-our "broken" son would be fixed, and William and I could go back to dreams and plans for our future.
Rex came into the world so easily, bypassing all the trials and traumas of labor. Delivered by C-section to avoid any potential trauma to his brain, his face had the look of an angel-bald and pure and perfect, not the look you associate with typical newborns in their ruddy, rough-and-tumble state. Tiny feet with crooked toenails-certainly they'd straighten out in time-and perfect hands. Long, slim fingers adorned by exquisitely sculpted nails. I didn't know a newborn baby could be so magnificently formed. And then there was his crowning glory in William's book-his shoulders! They'd caused quite a stir when the delivering doctor exclaimed, "Would you look at the shoulders on this boy!" as William and I awaited a first glimpse of our son. There he was, our little boy. We would name him Rex. Short, to the point, tough. A good boy's name. And it meant "king." Rex.
At eight weeks, weighing in at ten pounds, our baby was deemed strong enough to withstand the surgical procedure, which necessitated a four-inch incision down the center of a skull that wasn't much bigger than that. The neurosurgeon was going to cut holes in the cyst in numerous places so that it would drain and deflate like a rubber ball. When I asked why they couldn't just remove the whole thing, the doctor told me that the cyst was so large it was completely enmeshed in brain tissue; to take it out, they'd have to remove half of our son's brain with it!
I willed myself to be strong, as though I could counter Rex's own fragility. Our baby seemed much too small to have to undergo something so big. I tried to focus on the thought that it would soon be over, and I forced myself to keep my emotions and mind in check. And my husband was stoic-a little too stoic in my opinion. I wasn't sure whether it was a man thing, a South African thing, or maybe just a William thing I'd never encountered before
We waited in terse silence outside the intensive care unit. The procedure had gone smoothly, or so we'd been told-the cyst had been properly "fenestrated." Now we were waiting for our son to come down from recovery to the ICU where he would be interned for several days. It seemed to be taking forever. Was something wrong? Suddenly the silence was broken by the sounds of commotion as the hall door swung open, and in rushed a fleet of very big people, or so they seemed. They hovered over the bed they were hustling toward the intensive care unit. At first, all I could see of the occupant of that bed was a network of tubes, intertwining plastic life support for an unseen patient. Those people all but obscured their tiny ten-pound patient, but it was definitely him-Rex! My heart leaped, and so did I! I jockeyed for position to look on his face as he was hustled past us. Like a football team running their precious cargo protectively into the end zone, preventing any interference from the opposition, they hovered in a cloud of urgency that made Rex seem even smaller and more fragile. But there was no way they were going to get past this mother without my at least being able to look into my son's eyes. I lunged behind the bed as they hurried past, my reflexes sharpened by a potent cocktail of anxiety and love. Luckily, Rex's head was tilted backward so he was actually facing me.
That's when I saw his eyes. I felt the air being knocked out of me as they pierced right through me. Rex's eyes were frozen, transfixed on me, as though he was just waiting for an explanation. It seemed like his eyes were pleading for a reason. "There is no reason," I wanted to tell him. As I continued watching him, his eyes boring through me, I felt the steely bond of love being forged between us. For, although I'd loved Rex from the moment he was born, even from the moment I'd felt his presence in my womb, there was something new to this feeling-it was raw and all-consuming, both maternal and fiercely protective. Some mothers feel the surge grip their heart the moment they stare into their newborn child's face; for others it grows over time. With some, sadly, it never comes. For me it was in that moment, like an arrow piercing my heart.
REX'S LOOK that day would haunt me for years-the look of innocence and pleading-stalking me relentlessly at night. But I had misread the glazed stare. As a mother, I should have been able to know what was really there in my son's eyes. But I hadn't been able to see past their intense opacity and my own sense of blame and recrimination. The truth would only be revealed to me two months later by one more doctor, one more piece of information. This news would give new meaning to forever-time would shift and space would go askew. How could I have not known? Rex hadn't been staring at me that day in the hospital, his eyes pleading. The fact was he'd never even seen me. I knew that now.
I REMEMBERED how brightly the sun had been shining on the afternoon I learned the truth-how vibrantly autumn had worn its colored robe. The sun was soon to lose its gloss, and I would never again see fall colors in the same way. I had made an appointment with the ophthalmologist at Children's Hospital because I had wanted to have Rex's eyes checked. The trauma of the brain surgery had lessened by this time, and I had become concerned about the increasing movement in his eyes. They fluttered, not really fixing well on objects. Sometimes he seemed to be tracking like he should; at other times he did not, giving his eyes a random appearance. I didn't know if he needed a corrective patch or perhaps a minor surgery to fix them. Compared to what we'd been through already, my husband didn't think it would be a big deal, so he didn't accompany me.
The ophthalmologist finished the eye exam, shining a light in my son's eyes and peering in through his loupe as I stood watching. He finally asked me to sit down. As I sat facing him, he wrote some notes on a page. Waiting for him to explain what was needed to correct Rex's eyes became unbearable, the suspense forcing me to interrupt.
"So Doctor, what can we do to help Rex focus his eyes?" I asked, struggling not to sound too impatient.
I watched the doctor's face as he wrote the last couple of words on the page. A brief flash of emotion was stamped out by what appeared to be professional conditioning, and he was inscrutable as he laid his pen on the desk pad with finality. Only a sole audible breath, one of resignation, betrayed any emotion as he fixed his eyes on mine.
"There's nothing to be done," he began, then paused heavily. I wasn't following; I still didn't know where he was going. The doctor's eyes held mine, and he just said it: "Your son is blind."
I felt my body disconnecting from my mind in the most bizarre way upon hearing those words. His tone had been so matter-of-fact delivering such a brutal, unexpected blow. I felt the blow in my gut, but my mind went numb, unable to really grasp what he'd just said. He waited for a reaction. I was in shock, I suppose. I wasn't crying, but he extended a box of tissues to me anyway. Maybe he knew it wouldn't be long before the import of his words would hit me. He was probably used to the floodgates bursting.
I've since reflected on the best way to tell someone her child is blind, and maybe he did have to say it just like that. It seemed hard to me, like a sucker punch. But at the end of the day, there really is nothing that can be said to lighten the blow. Blind is blind. That's my conclusion, and it's so absolute that any sugarcoating is futile. The ophthalmologist told me Rex's blindness was caused by a congenital condition called optic nerve hypoplasia, which meant "underdevelopment of the optic nerves."
To me it simply meant the impossible, the unthinkable-Rex would live his life in darkness. It meant that my child, who had survived the horrors of invasive brain surgery at eight weeks, would never see. I couldn't quite connect to the reality of it all-it was just too big, like they were trying to snuff out my baby's life before he'd even had a chance to live it. I sat there listening to the doctor's spiel about the condition, but I just wanted to flee.
"The problem isn't with Rex's eyes," the doctor explained. "It's with the optic nerves."
"What do you mean? I don't know what an optic nerve is."
"It's a nerve that connects the eye to the brain," he said. "Light hits the eye, then it travels through the optic nerve to the brain, where it's translated into an image. So, in order to have good vision, three parts have to work normally-the eye, the optic nerve, and the brain."
"Okay," I said numbly, struggling to focus on the science of it, as tremors began to seize my body. I willed myself not to break into pieces right on the spot. I need to get the information-emotions only get in the way; hold them in check, just for a few minutes. Miraculously, I managed to disconnect my heart from my mind.
"Well, what's wrong with Rex's optic nerves?"
"They're underdeveloped. They're much smaller than normal, healthy optic nerves. And typically, optic nerves have millions of tiny fibers that serve to convert the light of the world into images. Rex's optic nerves have far fewer fibers than normal. Even if the light makes it through, he doesn't have enough fibers for his brain to make sense of it."
"How did this happen, Doctor?" I asked pathetically, letting my emotions seep through now. "I had an easy pregnancy, then three weeks before he was due to be delivered they found a cyst in my baby's brain, and now you're telling me he's blind too? That he was born blind! This is not supposed to happen. Babies are not supposed to be born blind!" My voice and emotions rose in a crescendo, and I was wiping my eyes with the proffered tissues now.
"We don't know exactly what causes it, but we believe it happens at around ten weeks gestation since that's when the optic nerves are formed," he said. "Most of the neurological wiring is also being laid at that time. So that could also have been when the seed for Rex's cyst was laid, even if it didn't blossom until much later in the pregnancy." He told me there were other incidences of children with optic nerve hypoplasia who'd also been born with a brain cyst. "The two could be related," he said, in what sounded more like a question than an answer.
"But you have no idea what causes either?" I asked in a tone of utter disbelief that said, "I want accountability."
"Nothing conclusive," he said, launching into an explanation that sounded like he was reading from a textbook. "But we do know that there were fewer than one hundred known cases of optic nerve hypoplasia documented in the century up to 1970, then during the seventies there were hundreds of cases, during the eighties, thousands, and now it's a major cause of blindness in infants. We think it must be environmental." Amazingly, I was taking it in, as though shock had sent me into a hyper-lucid state. But then, my emotions began closing in from all sides.
Nothing conclusive, environmental, we don't know why! Blind, blind, blind! Those were the words that swirled through my mind as I stumbled out of the doctor's office, assaulted now by an unremitting noonday sun. I was horrified at the thought of telling my husband and felt like the whole thing was some sort of surreal nightmare. The world as I had known it had simply and irrevocably ceased to exist in the space of an instant. No one could even tell me why, give me a reason. It just happened! Just like that! Like we'd drawn the "blind" ticket in a great baby lottery. The doctor had provided me with a straw to grasp. "Children with optic nerve hypoplasia may develop some vision as they grow older. Some do; some don't. We don't really know why."
Excerpted from Rex by CATHLEEN LEWIS Copyright © 2008 by Cathleen Lewis. Excerpted by permission.
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