One Lucky Student
There is an old adage which claims, “When the student is ready, the teacher will appear.” That is not what happened to me. I was neither prepared nor ready when my greatest teacher appeared.
It was the late 1970’s and I was just twenty-one when our family doctor apologized as he diagnosed my newborn with Down syndrome. The doctor’s face and voice were full of pity when he suggested I place my son in an institution. But I knew I never would. One look into my baby boy’s tender, blue/grey eyes and I was hooked.
The doctor’s diagnosis dazed me. As a naïve, undaunted newlywed armed solely with a “happily ever after” mind set, I had previously only seen myself cheerfully riding the wave of the American Dream—believing my future children and I could have or accomplish any goal we sought—if we simply worked hard enough.
Instead of excitement over my new baby boy, I initially received merely sympathy from family and friends. Until I learned to stop listening to medical experts, I heard only discouraging, pessimistic feedback from doctors with no expectations for my son to live to adulthood or accomplish anything.
My husband handled his feelings stoically and privately. If he was sad or worried, I never knew. He listened to me vent my feelings and concerns without criticism or any negative comments, but he rarely spoke about our son’s medical conditions or his future.
It seemed as if a heavy curtain had dropped on me, symbolizing the final scenes of my youth. But instead of receiving the support and praise I’d expected for raising a perfect child, I felt alone on a stage in an empty auditorium, facing only dense silence oozing with fear of the unknown. Little did I know at the time—I had no idea there was so much for me to learn—I’d one day realize how perfect my son really was. He was perfect for me.
As I rocked my baby and held him tightly in my arms, determination surged through me. I believed the might of my love and strength could be enough to protect him, and I would dedicate my life to teaching and raising my gentle, quiet child.
But I was wrong! To my amazement and delight, it has been my son who spent his life teaching me instead. And it’s been an entertaining, adventurous and exhilarating ride! His teachings changed me from a young woman who was scared and overwhelmed by the diagnosis of Down syndrome to a mother who considers having such a child as marvelous as receiving a bouquet of four-leaf clovers.
Even more than just being lucky, it has been my experience that having a child with Down syndrome has felt as if I were gifted with a golden key which opened doors to unique experiences offering profound enlightenment. And I’m confident I wouldn’t have learned these lessons as well through conventional education.
Throughout my son’s life—even into his twenties—a few friends and extended family members have asked me how I raised my son in such a manner that he seemed so happy and content. Also, why did our family appear extraordinarily cheerful and unphased by any challenges presented by my son’s diagnosis?
Their questions always caught me off guard because my family had nothing to be “phased” about. Why wouldn’t we be happy? Most who asked were older—from a different generation when institutions were prevalently used to house those with mental issues. Perhaps they didn’t understand how delightful it is to have a child with Down syndrome in our family and how much we’ve enjoyed the unexpected, unusual and exceptional experiences he presented. This book will address those questions and reveal how my son, Christopher Higgins, became the happiness super glue in our family.
Even though I gave it my all, I’m not the reason for Christopher’s success or his positive effect on others. The only thing I congratulate myself for is my willingness to remain a student—to learn from my son—and my openness to transform. Because of my immense love for him and desire to support his happiness, I chose to be open and curious at opportune times and see what I needed to learn rather than needing to be right or appear successful in molding him to become what I wanted him to be.
My son is forty-five at the time of this writing and I’m not sure I deserve credit for having taught him anything. He’s still as remarkable and stubbornly unique as when he was a young child who seemed disinterested in learning to walk or talk for way too long. And the good news is—I’ve learned more from him than he has from me.
It took years, but eventually young Christopher hit all the physical developmental milestones. He learned to walk and talk—in his own unique ways. He has always decided what he learns and when. Ah ha! One of my early and essential life lessons—we each evolve in our own time, and in our own ways. When the student is willing to receive, teaching can happen. However, actual enlightenment and growth do not occur unless the student chooses to learn. My son taught me how futile it is to resent or disrespect the timing of personal growth in others.
These lessons are the reasons why I respectfully refer to Christopher as my own Professor Higgins. (The name is the same as the main character in Pygmalion written by George Bernard Shaw (1912) which later became the movie My Fair Lady (1964). Although my Professor Higgins is neither a misogynist nor an elitist, he is a bit unconventional and actually quite loverly.)
While I’m still a work in progress and don’t hold myself out as a brilliant student, it’s my privilege to share Professor Higgins’ stories and how he taught me to see life through an extraordinary lens. From unusual and often stunning lessons, I learned how much joy there can be in letting go— surrendering—my own fallible beliefs and expectations. I discovered happiness and peace in acceptance, to anticipate that great opportunities may arise when leaning into the unexpected, and how to free myself from some fears. These lessons allowed opportunities to have fun during unplanned moments of life and enjoy the ultimate journey of the way my life turned out.
Before reading further, a few disclaimers are warranted. First, this is not a parenting book on how to face and overcome a perceived challenge such as raising a child with unique needs. I don’t pretend to be an expert qualified to render parenting advice. Rather, many of the lessons shared in this book come from my mistakes. Indeed, I’ve been more than lucky to have gleaned new perspectives, wisdom and abundant happiness from many unpredictable and amusing experiences.
Secondly, it is important to understand that although many children and adults with Down syndrome have some traits or physical features in common, these individuals are not the same. These beautiful people are vibrant in their selfhood and are clearly not clones of each other. What I’ve learned from Professor Higgins might not mirror what others in similar circumstances have discovered.
Finally, it isn’t my intent to gloss over any challenges of raising a child with Trisomy 21. Rather, I seek to explain how the marvelous joy, wisdom and knowledge which I’ve received have far outweighed the hardships.
The most universal lesson my son has taught me is that profound teachings abound through all of life’s experiences, whether easy or hard, good or bad. Looking retrospectively at the path my life has taken, I can readily see that my maximum growth happened at times of opposition. The more difficult the challenge or the more unexpected the event, the greater the opportunity for learning and refinement.
I wrote this book for the parent who is seeking to find the joy in their struggle, or who hasn’t yet found silver linings to challenges, and for anyone who desires to be inspired by stories of triumph and who chooses joy.
This book is dedicated to my son, Professor Higgins, who raised my awareness not only about how to love and enjoy life with him, but also about improving my interactions with all of humanity. Some people may call him “severely disabled,” some may refer to him as “handicapped,” or others may even use the technical medical term of “severely mentally retarded.”[1] But none of those terms seem fitting to me.
I simply and gratefully call him my beloved son and master teacher.
[1] Mental retardation became a medical term in the 19th century and is still used as a legal term to describe people with intellectual disabilities. Because “the R-word” has become used as an epithet or derogatory term in our society, it is widely considered to be a slur and is especially offensive and searing to those who have the diagnosis or love a person with Down syndrome. Significant progress to ameliorate this issue occurred in 2010 when federal law required the U.S. government to update its language from “mental retardation” to “intellectual disability” (Rosa’s Law, as codified in Public Law 111-256). Soon afterwards, the change was also adopted by the American Psychiatric Association in its Diagnostic and Statistical Manual for Mental Disorders (DSM-5).
