Rex

by Cathleen Lewis

  Trust. If it wasn’t the piano, it was Rex’s laugh, straight from the belly that went beyond reason, transcendent. And I knew I wanted what he had. Joy that was just joy, all in the moment, which defied his disability and spoke of a direct connection to God. Before Rex, I don’t believe I even knew what joy was. That’s because any happiness I had felt before was always modulated and conditional. Back then I would wonder if I was really happy or why I was happy, or even when “happy” would end. Ah, the elusive and short-lived happy! Like most people, I did want happiness to endure, so I was searching for what I felt would do the trick in a myriad of ways—living the Paris adventure, professional success, novelty, romantic love. Like analysis, that search took me away from God, hopping from one thing to another. I was definitely seeking something in my youthful restlessness. I just didn’t know what. But God knew, and He gave me Rex—the child who would not only lead me into the “refiner’s fire” of transformation by crushing my previous life structure, but who would also show me, by living it, that true joy is inside and doesn’t come from things or conditions. And so, the birth of a new, more solid structure. A structure of purpose. Purpose.

  Old desires became obsolete. Speak to me of market trends or cutting losses now and I’d probably look at you like you were speaking Swahili—it simply doesn’t register. Not that there is anything wrong with my old profession, it just gives me no sense of purpose for living. Rex’s birth gave me purpose, and now that has led me to a new life purpose—sharing the miracle of what I’ve lived with Rex in any way it might help others. Now I’m passionate about working with children with visual impairments or multiple disabilities, as I’ve became a fully Certified Educational Specialist in the field, or using my experience as a parent to help other parents cope with the emotional impact of their child’s disability. I’m passionate about extending outwards, offering up my personal foibles, the wisdom I’ve gained through my own mistakes or misconceptions to others, whether it’s speaking one-on-one with someone, or in the forum of a motivational speech, as Rex and I have been honored to share our lives with educational groups around the country and world. Now in writing this book, my hope is that it can help others gain encouragement and perspective in whatever their own personal struggles might be, that I might offer the blessing I’ve found in my son back to the world.

  Not only does God work in unexpected ways, but I believe He is a master of irony! Ah yes, indeed. I went abroad to discover and experience the world. Travel! Paris! The glamorous city of lights! Yet it was through Rex and staying home with a little boy whose body and mind were under daily assault, that the whole world came to me. God delivered it right to my very doorstep!

  Let me explain. Firstly, it was the intensity of Rex’s needs that slammed the door shut on any outside distractions, effectively getting my attention. I see now how God had whispered to me through a seed of instability for many years prior to Rex, but those whisperings had been lost in the din of life. Then came Rex’s birth. That birth was not just a loud cry, but a resonating scream that pierced my soul and wouldn’t go away. And then, once I was really looking and listening (this took some time, mind you), I began to see God’s truth revealed. Initially vaporous and blurred, that truth gained clarity in the emergence of Rex’s spirit, pure and beautiful, from out of the darkness of his own imprisoned body and mind. The whole world (the one I’d been seeking before through perpetual motion in my conviction that it was “just a step away”) is with me at all times . . . and before my eyes at any given moment . . . if I choose to see it. If I choose to see it! I’ve been conditioned for many years to believe the opposite, but God has given me Rex, the daily reminder that keeps me on track.

  I still enjoy the adventure of travel, all the more so because I couldn’t do any for so many years, having been held hostage by Rex’s autistic sensitivities. But now when I experience life with my son, whether it’s traveling or homebound, my senses are more attuned. My eyes have clearer vision, and the world seems fresher and more in focus, perhaps because I don’t look everywhere at once like I used to. And being Rex’s mother has given me ears to hear a beautiful song, even in the chaotic confusion of the world, because now I can filter out the static. And now I love stillness. It’s in the same stillness that used to unsettle me that I really feel my heart at peace. That’s when I can smell life’s subtle hint of jasmine layered on an ocean breeze or reach out and actually touch the air. I hear life’s symphony there now—deep in the stillness—my son chuckles, or giggles or unleashes that breathtaking belly laugh. I hear my son’s piano notes fluttering over the gentle rhythm of waves outside our window and know that all of life’s longings have found completion. That’s when I can hear all the notes, even the subtle harmonies . . . with each note resonating His truth.

  Acknowledgments

  First of all, a very special acknowledgment to CBS’s 60 Minutes for believing in the exceptionality of Rex’s life, and for opening up so many doors for Rex and me by shining a national light on our daily trials (and triumphs) To the incredible correspondent Lesley Stahl for “loving” Rex from the get go, and for seeing the mother side of it all. And to our amazingly talented producer Shari Finkelstein for “getting it right—”for blending humanity and scientific intrigue to create a beautiful “running portrait” of our lives.

  I would like to express my gratitude to the numerous people that helped make this book possible:

  To Tom Sullivan, my dear friend, who has always believed we had a story that needed to be told and that I was the one to tell it. Thanks for your vision and persistent belief in Rex and me, without which this book would not have been brought into being— not to mention the inspiration of your friendship and creative guidance throughout this project.

  To our literary agents Jan Miller and Nena Madonia of Dupree Miller & Associates for your encouragement and your wise advice throughout this process.

  I am very thankful for my entire Thomas Nelson team, who believed in REX.

  To Victor Oliver, for taking your belief in our book proposal and my abilities as a writer to the Thomas Nelson Editorial Board and recommending publication. And to the Thomas Nelson Editorial Board for taking a chance on a first time author

  To Kristen Parrish and Heather Skelton, my wonderful editors—you’ve both encouraged me and walked me through the very exciting and personal process of bringing our book to publication.

  To Joel Miller for your commitment to this project and understanding that it is about “sharing the miracle of Rex.”

  To Dave Schroeder for your personal touch in connecting us to the entire Thomas Nelson team, even as your own first baby was about to kick her way into creation!

  To Scott Harris and Curt Harding for your understanding of the value of Rex’s smile and laugh in any marketing or publicity plan, and for helping to give that smile a forum.

  To the many select individuals, who have helped Rex and me along the way:

  To Gail Davis and all the ladies at Gail Davis and Associates for being the perfect caring representation we need to expand Rex’s experiences in a speech/performance forum, in order to share the miracle of Rex. You are “off the charts.”

  To the caring staff of the Blind Childrens Center, who helped Rex and me gain a foothold in life.

  To my brother Alan, for pointing me to church and to God. And to Malibu Presbyterian Church for becoming the home where I would find God and the faith to get me through. It remains my church home, even in the ashes of the fires that burned the structure to the ground this year.

  To the heroes of Rex’s school days, from Kindergarten to seventh grade, 6 exceptional one-on-one aides. Without your singular caring commitment to Rex throughout his “hard school days,” he wouldn’t be where he is today. KD (Khadevis Robinson)—the national running champion, who moonlighted as Rex’s devoted school pal, and my friend, during the toughest of times. Ari, your incomparable sweetness was a light to my heart. Nanette, your tireless discipline and commitment to helping Rex
was endless. Caroline—your artsy creativity brought life to Rex. Catherine, thanks for seeing my mother’s needs as well as Rex’s. And Rex’s current school aide and pal, the incomparable Jim O Neil, you make school not just learning, but fun for Rex, and who but you to take him out surfing to catch 3 long, amazing rides into the shore?

  To Rex’s piano teachers :

  Sara Banta at Pepperdine for your loving guidance in Rex’s music, and creative genius in producing brilliant improvisations on the spot, and for being the light behind Rex’s performance music.

  David Pinto, you bring magic and laughter to Rex’s music every Saturday at your wonderful Academy of Music for the Blind. An extra special thank you for getting Rex to read Braille when I had given up. And to David’s wife Gayle for your loving and patient persistence in pushing Rex further in other disciplines, such as computer skills and Braille reading. Thanks to both David and Gayle for trying “Braille” one more time, even though Mom had given up.

  Lynn Marzulli for nurturing Rex’s “touch of the Divine.”

  To Angela Rasmussen Rex’s voice teacher, who went with Rex on his precocious and vertiginous voice slide at 11, helping him land his little boy’s soprano into a surprising and resonant tenor/baritone just months later.

  To Gloria Terry Knutson and Jennifer Jackson, Rex’s two first loves (other than Mom). You gave me crucial hours of respite and peace knowing Rex was in your loving hands.

  To my dear friend Raffaella, who stood by my side through each hospitalization and helped to hold me up. To Naomi for your prayers. To Susan for caring and never forgetting a Rex birthday or Christmas!

  To my family for your prayers, and for being my family.

  About the Author

  Cathleen Lewis spent a home-grown Southern California childhood in the rustic, throwback Ojai Valley. Then at 15, she went to cosmopolitan Rio de Janeiro with a Brazilian exchange student from her high school for a summer, and a need to leave home and see the world was born. She went on to earn a B.A. at Stanford University in International Relations with her eyes on travel and life beyond the “Ojai orange groves.”

  After graduation, a summer in Paris, a chance encounter with the head of a Parisian modeling agency, and Cathleen decided to “stay for a while.” That summer turned into 12 years of living in Paris. During that time she initially worked in the glamorous world of fashion as a model, then returned to school to earn a French Business Degree, which she applied in the financial markets when she was given the mission to create a currency options trading desk at the large French bank. After 7 years of the challenging and fast-paced currency markets, the demise of the European Monetary System coincided with an extreme urge to “return home,” and the author returned to California.

  But after so many years abroad, California didn’t quite feel like “home” anymore. Another chance encounter, this time in Los Angeles, and Cathleen met the man she would marry. Since Rex’s birth, her life has been consumed by the love and responsibility for her son. The break-up of her marriage only served to reinforce that absolute commitment. Her struggles to advocate for Rex in the public school system made her aware of a great lack of vision specialists in the system, and especially those with expertise in autism. Cathleen’s passion for her son, and desire to help other kids like him, along with their parents, led her back to school once again, this time to earn a credential as an Educational Specialist in Visual Impairments.

  Cathleen lives in Malibu, California, where she currently divides her time between her work as a Vision Specialist, the demands of her life as a single mom, raising her complex son, and travel around the world to select speaking/piano playing engagements with her son, where he can share his gift, and she can share the miracle and beauty of Rex and what it’s like to finally “come home.”