Walk by faith, not by sight.
CHAPTER SEVEN
The Ripple Effect
If you don’t like something, change it; if you can’t change it,
change the way you think about it.
—Mary Engelbreit, artist and entrepreneur
Rex had always loved the water, as befitted any child who grew up near the beach. Pools, the ocean, his bath, he loved it all. He’d only been ten months old when I got my courage up, blew sharply into his face, and dunked his head under the water in a pool. Since then, he’d been fearless in the pool; using his inner tube for buoyancy, he’d flap and kick his way from the shallow to the deep end of the pool.
At the beach, I would hold him, as rippling baby waves hit his legs, gently massaging them. The rhythm and movement of ocean waves became a game that sent him into peels of laughter. When he’d feel them hit him from the front, I’d say, “The waves roll into the shore.” Then, as they flowed at him from behind, I’d say, “And then they get sucked back out to sea!”
And then, there was his bath. It was alternately soothing, soaking sensitivity out of that little body, and exhilarating. At times Rex would flap his hands into a wild splashing frenzy, soaking the floor and me, along with his own face and head. He didn’t use the toys I’d put in the bath much, normally plucking them from the water and then dropping them out of the tub to get them out of his space. The water itself was his preferred plaything.
Tonight we were playing a new game in the bath. I took a large marble (about an inch in diameter) and dropped it into the water from about a foot up. There was a sharp plop as it hit the surface, ending with a thud as it struck the bottom of the tub. He clapped at the plop-thud sound, giggling. “More, Mommy, more,” he said, already into the game. I retrieved the marble, dropped it once more, and then put the marble in his hand to show him how he could make the sound himself.
“Just hold the marble way up high.” He raised his hand a little, but not high enough. “Your hand’s gotta be higher, higher, higher, sweetie,” I said, and he extended his hand as far as it could reach this time. “Then just drop it with a plop and a thud!”
He dropped it, then found it in the bath and dropped it again, over and over, loving the plop-thud sound effects. As I watched the water rippling out from the marble’s contact point, I thought back to my childhood home and our old square swimming pool, where I used to sit with my own mother, tossing stones up into the air. We wanted to see who could make the biggest splash as they plummeted down. Water rippling out from the contact point. I had begun to witness a similar process unfolding in Rex’s life, as the miracles that had touched him resonated outward, touching others as well.
Entering into my son’s fifth and final year at the Blind Children’s Center, his language development was moving forward, with his voice echoing through those hallways with increasing frequency. He was a child breaking out of the prison of his body, with his personality opening up along with his voice. He still had his sensitivities, to be sure, but through music, the beginnings of language, and increased freedom of movement, he’d gotten a critical foothold in the world. As Rex continued to push back the borders of his existence, I watched him help others do the same thing with their own lives, gaining respite from their daily burdens. Water rippling from the contact point. It was there at his preschool that I first began to witness that effect.
Rex had a soft, little voice when compared to other loud four-year-olds, but it was bright and cheerful. It was also musical to the ear, made up of singsongy cadences, with a bit of echolalia (repeating phrases rather than answering them) and scripted speech patterns. He often repeated conversational sequences the same way, like there was only one way of communicating. If one changed the phrasing, he was at a loss as to what to do. For example, the question, “Rex, how are you today?” couldn’t be changed to “Rex, are you doing okay today?” The rigidity in his brain wasn’t allowing that yet. He seemed to need rhythmic cadences, treating words in a sentence as though they were beats in a measure, in order to comprehend the spoken word. Ask him, “How are you today, Rex?” in a monotone, and you’d likely get a blank look. But repeat the same question with each word highly intonated, and he’d promptly answer, “I’m fine, and how are you today?” Rex needed routine and order to make sense of things. He also needed music the way the rest of us need air. Breathe in music, and breathe out comprehension.
Fortunately his new teacher at the Center grasped that critical link, and she proved to be a godsend. Not only was she creative and capable of thinking out of the box in order to make Rex’s curriculum more effective by making it “more musical,” but she loved to sing. It wasn’t kids’ songs that interested her, which was good, because those songs only went so far with Rex. She liked popular music, or maybe I should say music that was popular in the ’70s. That seemed to be her era. So when she saw how my special boy could be motivated through music, and understood his easy grasp of her preferred genre, she plunged him into the world of 1970s vocals!
I came to pick him up at the end of class one day to find him playing the ’70s classic “Lean on Me” on his classroom keyboard. The next day he was singing it: “Lean on me, and you’ll feel strong . . . if you need somebody, you can lean on me.” Among laughter, his classmates would take turns leaning on him to see how strong he was. Music became a learning tool for Rex and for those around him. His soft speaking voice gained clarity and strength when he sang, and his ability to memorize complicated lyrics was almost as astonishing as his piano-playing ability. Soon he was also singing “Leaving on a Jet Plane,” “California Dreaming,” and his favorite, the Simon and Garfunkel hit “Feelin’ Groovy.”
It became a common sight to see a delighted little boy tromping down the hallway or out on the playground swing singing, “Slow down, You’re movin’ too fast . . . I’ve gotta make the morning last . . . I’m kickin’ down the cobblestones . . . Looking for fun and . . . FEELIN’ GROOVY!”
Inevitably, someone would be watching, captivated, whether it was a teacher, the parent of another child, or an outside visitor to the Center. It was as if they wanted some of what Rex had, some of that magical something that seemed to override limits, that seemed to take him outside his disability. As though Rex had a magnetic pull, anyone watching would normally struggle to tear himself from the sight, reluctantly leaving the child, the joy, and the song.
THE EFFECT my child began having on people wasn’t limited to the Center but began rippling even farther. Rex was four and a half and needed his yearly blood test at Children’s Hospital to check his endocrine status. Children with septo-optic dysplasia are often beset by problems with their endocrine system—everything from growth issues (necessitating daily growth hormone shots) to hypothalamus problems, resulting in such things as an inability to regulate body temperature. I’d even read an article written by a mother who had been devastated by the sudden death of her five-year-old son with septo-optic dysplasia when he’d spiked a fever of 108 degrees! Then there were the adrenal glands and the thyroid, which were also at risk, not to mention the threat of premature puberty (meaning really premature, like five years old!), or the possibility of not going into puberty at all (necessitating shots in order to continue physical and mental development). Thankfully, Rex didn’t have any major endocrine dysfunction yet! But he continued to be at risk, and his endocrinologist said he could develop more serious issues at any time. Again, the research was too recent to know definitively, but that’s why his condition needed to be monitored.
My boy often had a sort-of musical gait when he moved, which matched the bouncy tone in his voice. That was the way he was moving as we reached the front of the hospital. As for me, I was rigid, as I always was when I came to Children’s Hospital, as though that would help keep things in control in the place that had thrown our lives so utterly out of control. Hospitals represent the stuff of a mother’s nightmares. As if on cue, my pulse began to race the moment we passed through the front doors.
There had been too much pain here, and it was that memory of suffering and trauma that invaded my whole being as we headed down the long, stark entrance hallway. Rex normally became extremely agitated as well, once the loud, painful sounds of this place hit him, with his own memories of being restrained in order for someone to poke or jab him or otherwise inflict “torture.” I was prepared for the worst.
But this time a different scene was to unfold, one filled with healing. We were sitting in the laboratory waiting room, waiting for the nurse to call in Rex. The room was full of people deep into their own thoughts, filled with their own pain. It was always the same at Children’s Hospital, where the patients were the innocents. Everyone seemed to be really hurting: the kids, the parents, and even the staff.
Nobody in that waiting room comprehended what they were suddenly witnessing, least of all me. A beautiful little boy, with silken blond hair, had stood up from his seat and, oblivious to anyone’s worries, began to sing. Rex! His voice was pure and sweet, like his face, and the clarity of the tones began drawing the people in the room out of themselves. I watched furrowed brows soften and clenched jaws broaden in wonder. They could see he was blind, indeed it was impossible to miss by the way he’d stood up with his hands feeling for support and by the way he stood there with precarious balance, his eyes seeming to focus only on the unseen. So the spectators were all the more stupefied as they witnessed something akin to true sight when his voice sang out, angelic and in perfect pitch, “God is so good. He’s so good to me.” As he finished, the whole room broke into applause, amazed and spontaneous, while Rex beamed and clapped for himself, as he so loved to do, pronouncing, “‘God Is So Good’ is a beautiful song!” When he heard more clapping, he repeated for emphasis, “‘God Is So Good’ is a beautiful song!”
I knew from the reaction in the room that I didn’t need to tell Rex quietly, “Sweetie, we need to wait until we get to the car to sing.” I also knew he was in the mood to sing, which meant he’d inevitably launch into another song. Not wanting to impose religion on the room in the form of our church songs, I whispered “Feelin’ Groovy” as a suggestion. But not this time, not in this place. Rex clearly had ideas of his own, and apparently it wasn’t a 1970s carefree kind of day. Ignoring me, he announced decisively, like he was a singer on a stage, “This Little Light of Mine.” Without a moment’s hesitation, he broke into the sweetly moving song, which was one of his Sunday school favorites. As he finished the refrain, “Let it shine, Let it shine, Let it shine,” the applause was renewed, even more vigorous this time, from patients and staff alike, while Rex smiled broadly, loving it. I glanced around the room to see the most astonishing mixture of smiling faces and moist eyes as his captive audience shook their heads in amazement at this beautiful and unexpected scene.
And with that I knew I’d received the unexpected myself—an unexpected healing. My old ghosts were finally being laid to rest, as my heart that had been battered and bruised in this hospital, on so many occasions, now soared on the light of Rex’s smile.
Let it shine, Rex!
THERE WAS going to be a special musical event held at the Blind Children’s Center a couple of months before graduation day in June. All I knew was that it was a concert for kids only, and I assumed that whatever it was, Rex would enjoy it. Since parents had not been invited, I dropped Rex off in his classroom and then left to run errands. But out of curiosity, the unavoidable curiosity one experiences when being specifically excluded, I returned to the Center to see if I could “accidentally” catch the end of the “kids only” concert. As I entered the lobby, I could hear strains of guitar music coming through the closed door to the reception room where the concert was going on. It sounded like a Barney song, but I’d never heard Barney sung and strummed like that before. It was smooth and jazzy, in a pop jazz sort of way. Suddenly, like the songs Rex had been singing of late, the singer’s voice snapped me back to 1980 and the unmistakable voice of Kenny Rankin. All my college friends had listened to his light, airy pop jazz, which had captured the mood of that era so perfectly. Back then, it had been “date music.” But today, Kenny Rankin was using the power of his voice, his music, in a different way. Not to warm the hearts of young lovers, but to put smiles on the faces of blind preschoolers.
I sat there through another song, wishing I’d been invited along with the kids, when the door opened. The concert had ended, and as the kids started heading back to their classrooms, the executive director of the Center saw me and beckoned for me to come into the “concert” room. She was effusive. “Cathleen, I told Kenny about Rex’s music, and he’d like to hear him play something. Would that be okay?”
My son, playing for Kenny Rankin! It would certainly be okay with me, but Rex might be disturbed by the change of routine, routine being so important to his sense of balance. It was recess time now, not staying-inside-with-Kenny-Rankin time. Predictably, he began whining as I detained him at the door, while his classmates headed outside. Kenny saw him then and rushed over.
“Hi, pal,” he said. “My name is Kenny, and I hear you’re a little musician.”
Rex didn’t answer, so I did. “This is Rex.”
“Well it’s nice to meet you, Rex,” Kenny said. “You want to play some piano for me?” Rex’s face was blank. Kenny led him over to his guitar, which was positioned on a chair. He took Rex’s hand and placed it on the guitar strings. “How about the guitar? You want to play the guitar, Rex?”
Pulling his hands away immediately, still defensive, Rex said, “Don’t want to play the guitar!”
“Okay, well how about if I play the guitar?” Kenny asked, strumming a few chords. Rex relaxed instantly, as though he’d been tapped by a magical wand, all tension seeming to melt from his body into the richness of the chords. I was kneeling down to be eye level with my son as he stood leaning against me, when Kenny began strumming a familiar song. It was his own version of the Beatles’ classic “Blackbird,” with the words from the past fusing into the present—haunting and prophetic. I felt a lump forming in my throat as Rex stood spellbound listening to words that could have been his own: “. . . take these broken wings and learn to fly.”
The image of the blackbird crying out into the depths of darkness in lonely desperation hit me in the heart with a longing so intense I had forgotten the whole point of this encounter had initially been Rex playing the piano. But Rex hadn’t forgotten, and using his name in third person as he always did, he said, “Rex wants to play the piano.”
“Great pal let’s hear it!” Kenny said.
I led Rex to the piano. His fingers struggled to depress the keys of this acoustic instrument, since he was used to the electronic ease of his piano keyboard at home. At first he wasn’t getting any sound, but then he struck harder with his fingers, determined. Notes at last! He knew what he had to do now to make the notes, and they began filling the room. I immediately recognized what he was playing, as did everyone else in the room—Kenny, the executive director, and some administrative staff members who’d come in as the first few notes had been struck. It was the ultimate song of God’s transforming grace, “Amazing Grace.” It didn’t matter that he was missing a note here and there on those stubborn keys as his sweet vibrato voice hit the final:
I once was lost, but now I’m found,
Was blind, but now I see.
I looked to see Kenny utterly speechless, his eyes brimming with tears. This brilliant musician had come to share his gifts with the children at the Center, and as I watched him rub his eyes with a hand, I knew Rex had given him a special gift back. Was Kenny’s song like my lifelong prayer for my son? I didn’t know, but what I was sure of was that Rex was answering that prayer through grace, as had God when He sent His Son.
IN THE weeks leading to Rex’s graduation day, I had become more and more emotional. This was more than preschool graduation; it was graduation from the Blind Children’s Center. Since all parents get choked up and nostalgic when their children reach big milestones, I
knew that part of the reason for my increasingly frequent crying spells was a normal reaction to “my baby” growing up, but I also knew that my emotions ran much deeper.
The big day came and there was a buzz in the air at the Center. Emotional parents, excited kids donning blue caps and gowns, and media cameras rolling to capture the event for the evening newscasts. The mayor was even there to present the diplomas. Colored balloons floated in the air, attached here and there, with rows of tulips adorning the stage. As I sat in my front-row seat, my older brother, Alan, poised with his camcorder and tripod off to the right to capture the event, I knew all the fanfare was to say to a group of blind five year olds, “You made it! Now you’re ready for the real world.” That was a pretty big message. I also knew how close we’d come to not making it, how close we’d come to being broken in this place. I shuddered briefly at the thought. Like one tottering on the edge of a cliff, it would have been so easy just to topple over. Rex’s life might have ended before it had even begun. But it hadn’t, and here we were! This morning I had wondered about so many details surrounding this day: Would the sun be too bright, bothering Rex’s eyes? Would the ceremony be too noisy? How about microphones screeching in his ears? Would they be able to get his graduation cap on his sensitive head? These were issues that still plagued us, still needed to be worked with, but suddenly none of it mattered. We were here! That was all that mattered. With my heart pumped full of that amazing grace Rex had sung about, the ceremony began.
Rex Page 11
