Rex

by Cathleen Lewis

  He pushed the notepad to the back of his desk and stood up to shake my hand. “It’s nice to see you, Mrs. Lewis and Rex,” he said. His manner was professional and polite, but I felt it was a bit rote, with his mind still caught up in his own important thoughts. As I searched his face, I held out hope that this man of science, of such seeming intelligence, would be able to use that gift to provide me with the answers I was seeking. I briefly explained my concerns and handed him a folder full of Rex’s brain scans. The MRI imaging sheets had been on file in the hospital since Rex’s earlier surgeries.

  He clipped the sheets to an illuminated board beside his desk and moved his head closer to the most recent scan. “The cystic area is there,” he said, pointing, with the pen in his hand, to an area that appeared nothing but blotchy to me. “But there are other abnormalities as well,” he said, clinically surprised, as though he were recording notes into a Dictaphone. He didn’t do any pointing this time or speak directly to me, but I saw the puzzled look on his face, like one who’d been blindsided and didn’t like it, or like a scientist who’d allowed an omission in research data under his watch.

  “What do you mean, ‘other abnormalities’?” I asked.

  “He has no septum pellucidum,” the doctor said, still looking at the scans. “And his corpus callosum is smaller than normal.” He recited these facts in a way that seemed automatic, rehearsed, like he was reading from a script. As it turned out, he was reading the script of a diagnosis. Glancing briefly at me, his head remained fixed on the sheets as he told me it was a pattern, that these specific types of brain malformations happened frequently in children with optic nerve hypoplasia (ONH). But the presence of the brain abnormalities changed the official diagnosis from ONH to septooptic dysplasia. And therein lay the offensive error in the doctor’s research, or at least that’s what his attitude seemed to imply.

  “But I didn’t know about that before,” I said, disbelieving. “I didn’t know there were other abnormalities in Rex’s brain besides the cyst. He’s my son for heaven’s sake; I have a right to know,” I said, beside myself.

  Reluctantly, he turned to face me. Then he said, “Apparently there’s been some miscommunication among physicians.” Just as quickly, he retreated back into his professorial style, avoiding further explanations about the “miscommunication.” Before I could ask if he was referring to Rex’s neurosurgeon, he launched into a tutorial. He explained that the septum pellucidum was a thin membrane located at the midline of the brain, which separates the left and right brain hemispheres. He continued by describing the corpus callosum as a bridge of white matter joining the two different sides of the brain.

  I felt my own brain rattling as I tried to follow the scientific mumbo jumbo, my insides beginning to shake. I wanted to grab him by the shoulders and just shake him! Rattle him! Bounce those spectacles and knock that bow tie right off him to get to something real. But all I could do was blurt out, “But what does all this mean?”

  The doctor sighed in resignation, like I was forcing him to come out from behind his protective shield of science, forcing him to be human. He took a breath, as though it were real effort to shift down so many gears, then said, “Simply put, Rex has no divider in his brain, and the bridge linking the two sides is smaller than normal.”

  I felt tears of frustration beginning to sting my eyes. “But what does all this mean for Rex, for his life?”

  The doctor leaned forward, sliding his glasses down to the tip of his nose to peer at me, indulging me. “Mrs. Lewis, I’m just two years into my research, but what I’m finding is that there’s no real difference between the children with septo-optic dysplasia and those with optic nerve hypoplasia.” This time he tried to translate even without my asking but seemed to be reaching the limits of his patience. “Or, if you want, no difference between the children with those particular brain malformations and those who don’t have them.” And finally, in a tone that implied I was a child needing everything spelled out, he said, “It doesn’t change anything. It won’t make any difference for Rex.” And that was that, tutorial over, class dismissed.

  As I put Rex into his car seat, something didn’t set right with me. My instincts told me the septum pellucidum, there to divide the brain in half, had to have a function other than a mere physical presence, or it wouldn’t be there. And if it had a function, why could nobody tell me what it was? Was the human brain such a mystery? Could it be possible that this little three-year-old boy in the car seat was leading us into some sort of uncharted territory? It was hard to believe that such could be the case, in the age of modern medicine and technology, but that seemed to be our present reality. With that gnawing sense of unease in my gut, I wondered where to go from here.

  Maybe Rex’s neurosurgeon could throw some light on the matter, help ease my own frustration. I wrote him a letter and got an appointment for just a week later. While waiting with Rex for the busy surgeon to enter the office, I realized that this place always made me anxious. It had at once the feel of waiting and foreboding. I suppose that’s what pediatric neurosurgery is supposed to feel like.

  The surgeon entered in a flurry. This time his uniform was a white lab coat over blue hospital scrubs. This man always seemed to be on the move, and his lean, agile build and features added to that image. His hair was completely white, a testimony to years at his trade, but his face was unlined and smiling. In spite of the brusque aura that surrounded this eminent doctor, he had the ability to focus his eyes right on you and disarm with a smile, like an elder statesman. He looked me straight in the eye now, with an indulgent smile, and said, “I’ve read your letter, and I understand your concerns, Mrs. Lewis.” However, he went on only to explain that Rex’s cyst remained under control and the shunt was functioning properly. That was certainly good news, but it was not the information I was looking for. When I moved on to my real concerns, trying to elicit clues as to what Rex’s potential brain function might be, he said he really didn’t know. Then he hit me with that smile again. But this time it didn’t disarm me. It just seemed to say, “End of accountability.” There would be no projection as to how the current structure and state of Rex’s brain would impact his life. He was a surgeon, a cutter, and that simply wasn’t his responsibility. And, to be fair, he probably really didn’t know.

  That second hospital visit had upped the ante, both in expectations and in final disappointment. I couldn’t believe that doctors of such eminence could be like that—seemingly so myopic. How could the system of medical specialty be so compartmentalized that ophthalmology and neurology didn’t even seem to communicate? Was this supposed to build highly qualified specialists? If so, I asked myself, at what cost? Because from where I was standing, it made their vision restricted and rendered them both incapable of helping with any sort of global brain diagnosis. How would the different pieces of the Rex puzzle fit together to define his being? What could we expect from his life? And why couldn’t anyone tell me?

  The whole hospital experience made me feel as though I was turning in circles and going nowhere. Finding more questions than answers in the medical world, life hadn’t gotten any simpler than when I’d begun my search for information. If doctors couldn’t help, and there’d been no word from God, I hoped the therapists could help. In frustration, I turned to Rex’s weekly therapy schedule.

  First came occupational therapy on Monday afternoons. The purpose of the occupational therapist (OT) was to help Rex use his body and hands in appropriate ways to carry out his daily activities. They worked on developing the muscle movement of each individual hand and coordinating the use of his hands to make them a team. They called it “bilateral coordination.”

  Rex’s OT, Jane, began the session today, as she often did, by bouncing Rex on a therapy ball. This was to “get his motor running,” in addition to working on balance and strengthening his stomach muscles. She held him securely at the hips, bouncing him up and down, forward and back, side to side, as he laughed and flapped his arms to
each side of his body. I told her of my recent discovery that Rex’s brain had a smaller-than-normal bridge between the two sides, to which she responded, “He does have extreme difficulty crossing midline. Could be the reason.” She explained “difficulty crossing midline” as “lacking fluidity of hand movement on the opposite side of the body.” When I looked confused, she said, “Just think of midline as his belly button. He doesn’t move his right hand past his belly button to the other side. Same with his left hand.”

  Well I knew that! I just didn’t have a label for it. On his own, Rex was like a robot with toys or objects, batting the ones on the left with his left hand while tapping those to his right with his right hand. If he wanted his hands to change sides, instead of crossing them over his belly to the other side, he would spin on his bottom. He had even perfected the movement. I called it the “butt spin”: half circles, full circles, and on occasion the “double twister.” And it was effective because if I placed a musical toy to his left, and touched his right hand, saying, “Play it with your right hand, Rex,” he would execute a clean half circle, and voilà, his right hand would play the toy that was now at his right side. I was aware that he wasn’t crossing over in a normal, flexible way, but had attributed it mainly to his blindness and lack of visual information to imitate. I had believed that with training he would learn more “normal” movements. But suddenly, I was beginning to see that it was more, much more—a new reality was dawning. Rex’s body was more rigid because his brain was more rigid, and he lacked the connectors necessary for normal flexibility.

  Jane geared the OT session to address that issue. She helped Rex slide down off the ball onto the thick, cushioned therapy mat and assisted him into a side-sitting position. That meant he had his legs bent at the knee and both calves on the left side of his body. This position allowed his left hand to rest on top of his right leg and even cross over to his right side. Thus, he was “crossing mid-line.” He didn’t whine or fight the position, which she applauded, “You’re doing a great job, Rex.”

  Indeed, he sat playing with the toy she’d placed there. It was his favorite therapy toy, a little xylophone, which he could tap with a baton to make crystalline notes sing out. He was having a good old time, and he was not only holding the baton firmly in his left hand but was using it to play the toy instrument on his right side. Such a simple thing for almost any child, yet here it was something to be applauded. After a couple of minutes, Jane removed the toy, signaling it was time to change activities. This routine told Rex he needed to get himself out of the side-sitting position. But a confused look crossed his face as he tried to move his body. He didn’t know how to do it. Jane had put him into the position, and he didn’t know how to unwind his legs.

  “Rex, you’re stuck!” I said, loudly voicing the obvious, which partly masked the growing sense of unease I was feeling. Then converting internal tension into action, I repeated, “You’re stuck, Rex,” but this time it was in a playful tone, which I hoped would stimulate him. “Come on, honey,” I urged. “You can get yourself unstuck. You can do it.” Exuberance could incite Rex into action when it was focused directly on him. He soaked it up like a sponge, like now, and his face lit up feeling the pulse of energy. It sparked a spurt of adrenaline, causing his legs to straighten at the knees, as he took the challenge to get back into a normal sitting position. Unfortunately, his excitement had gotten out of control, and he’d been too quick, too jerky. His body didn’t compensate by shifting his weight in order to maintain balance, and he toppled onto his right side. He laughed as he tumbled, thinking it was fun. Normally that laugh was impossible to resist, but today it made me want to cry.

  That night I sat wearily on the living room couch replaying the day’s therapy session in my mind, reliving the therapist’s words, hearing their negative bent—lacks fluidity of movement, difficulty crossing midline. It was exhausting for me and for Rex, in spite of the moments of fun he’d had. Why should life be such hard work? I was sipping a glass of wine, trying to unwind, while watching Rex doing his own unwinding at his piano keyboard. His hands were moving more rapidly than usual on the keys, like he was releasing the day’s tension. We were clearly each using our own coping methods.

  As the minutes slipped past, I remained caught up in my thoughts, each one more confusing than the next. Why was God letting me be so confused, when it was clarity I was so desperately seeking? I glanced at the wine glass in my hand—just a few drops left. Then I looked over at my boy. He was still playing, but his tempo had slowed down, becoming mellower, and he looked at peace, his face at ease. Weaving notes to form his own little made-up melodies with his hands that were so rhythmic, so . . . fluid. There was the very word the therapist had used today—lacks fluidity in his hand movements. “But look at their fluidity here,” I wanted to shout.

  Then, like he was reading my mind, he suddenly threw his right hand across his body to hit piano keys to the left, then pulled it back again, only to throw it over once more in what became a series of effortless leaps to the far left extremity of the keyboard—over to the left and back to the right, repeatedly—while his left hand played notes directly in front of his body. Crossovers! He was using his right hand to cross over, again and again, meaning he was “crossing midline.” Repeatedly and effortlessly! Rex could get his hand across his belly button on his own—easily! I almost dropped my wineglass as I realized his brain had the capacity; it was right there in front of my face, like an answer to prayer. I couldn’t wait to show his occupational therapist. I asked myself, Does Rex know what he is doing? As though answering my thoughts, he began squealing in delight.

  The following day was Tuesday, which meant physical therapy, not occupational therapy. His physical therapist (PT), Tam, worked with him to get his entire body to move better, not focusing primarily on his hands like his OT did, although there was some carryover. Tam often worked with him on different swings, from platform to bolster swings, getting him to climb on and off and then working on Rex’s balance once he was on the swing. I told her about the piano crossover and, being well aware of Rex’s “crossing midline” issues herself, she was thrilled to hear what he’d done at the piano.

  Seizing the moment, she tried to get him to demonstrate the skill by grasping the left hand rope on a platform swing with his right hand while she held his left hand. She even put a little musical box by the rope to entice him to reach for it with his free right hand, but his hand just extended out in front of his body. After trying unsuccessfully for a couple of minutes, Rex became frustrated, and my own sense of letdown was palpable. He couldn’t do it. Or wouldn’t do it. I confess, in that moment, I didn’t know which it was. I was even beginning to doubt the reality of what I’d seen at the piano. That child seemed so far removed from the child who was in front of me here. After what seemed an eternity, Tam took Rex’s hand and drew it gently across his body to grasp the rope.

  “It’s okay, Rex; you’re doing fine,” she said, in an attempt to relieve the tension she felt surrounding her. She then helped him into his usual “climbing on the platform swing” position. He began to raise his right leg onto the big swing in a slow, labored movement, as I repeated to her the news from the scans regarding the two sides of Rex’s brain. From her point of view, Rex’s main difficulty was not in his muscle strength, but in his inability to use that strength to accomplish a specific movement. “He can’t motor plan when he has to execute a series of different body movements.”

  Motor plan? I didn’t get it and said so.

  “It just means he has the strength to climb on the swing and all these swings,” she said with a sweep of her hand. “He just doesn’t know how to do it.”

  I watched in growing discomfort as Rex struggled to get each leg in succession onto the swing. Tam explained how movements that most of us do with absolutely no thought are actually complex patterns of smaller steps. Right knee up, hands forward, shift weight forward, then left knee up, twist torso onto bottom, and so forth. It shoul
d be as natural as breathing, right? If not, there must be a serious breakdown in the brain’s wiring.

  Rex finally finished his task. It had taken him monumental effort to climb onto the platform and grasp the ropes. But now he was ready to swing. It was his reward for pushing his body and brain to the limit. As I watched Rex flying through the air, he seemed so free and unfettered. Yet once the swing stopped and he was required to climb down, the tortured process began once again. It seemed endless! That’s when Tam hit me with the kicker: not only could Rex not motor plan movements he had never done before, but once he was taught how to execute them, he had trouble doing them again. “It’s called apraxia,” Tam said.

  Another new word she was applying to my son; another neurological disorder supposedly afflicting him. In essence, it implied his brain couldn’t remember how to accomplish even the simplest movements. That seemed impossible, certainly unthinkable. How could you forget how to climb onto a swing? As I listened to her explanation, I realized this thing was getting out of hand. It was becoming more than I could handle; I thought information would be the key to unlock the mystery of my son, but I was getting buried under the weight of it all. How could brain parts doctors said were “insignificant” wreak such havoc in my son?

  The next day was speech therapy. The physical body is one thing, but speech touches at the very essence of a human being, the ability to communicate. For me, it represented the ability “to be.” I needed desperately to cling to hope as I entered the familiar speech therapy room, but I felt fear gripping my insides even as I set Rex down at the table where he normally worked. Without preamble, I asked his speech pathologist what she believed his issues were. Why wasn’t he speaking yet?