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On February 3, 1970, a child was born. He was unlike any other child born than day.
I can only imagine the many times each of us has looked with awe at a new life or held one in our arms. Seemingly perfectly formed, we look with wonder and dream of all the possibilities! Many new parents talk about counting the fingers and toes—carefully checking all the outward signs of normalcy. With all accounted for, the parent breathes a sigh of relief—and hopefully gives thanks.
But there are other parents whose only sigh is that which comes after many tears. What they see on the outside is not normal and for them there is no immediate relief—and sadly many never learn to give thanks.
This is the story of such a life.
On February 3, 1970, a child was born. He was unlike any other child born that day. It wasn’t the look of his face or his size, though both of these were different from the norm. It was the very essence of his being—his chromosomes were malformed. Only five other children at that time had been identified with this rare condition. According to doctors, the chances of having such a child were one in five million.
Shortly after conception he began to develop differently from others. His differences were rare indeed. After a normal beginning, his 21st chromosome became affected missing a piece of crucial information for future normal development. He was born blind in his right eye. None of his bones were aligned properly with his joints. His head was held in place only by muscle and tendon. Doctor’s predicted slow growth, severe mental retardation and a short life expectancy—their prediction was that he would live to his early teens—at best.
In the years that followed his birth he had grand mal seizures, chronic upper respiratory infections, scoliosis, and kyphosis of the spine. In the eyes of the world he was a “mistake” of nature, an accident. He was viewed by many doctors as defective because they would never be able to fix what in their eyes was wrong with him; others saw him only as a problem for society.
We saw him as our son. His name was Rob. He was our first-born, a child who was “fearfully and wonderfully made” by God and who was in need of love and care, not unlike any other child born that day. He loved flowers, cats, Grover from Sesame Street, music, playing in water, church, hugs, and dancing. He lived for 29 years, twice his life expectancy. He was eventually the brother of four siblings.
Rob changed all of our lives because of his courage, his love of life, his smile, his determination, his love of music, and his victory over his earthly limitations. He opened our eyes to fully see the ordinary as extraordinary. We came to appreciate that eyes that see, tongues that speak, and limbs that move are amazing gifts. Those of us who shared Rob’s life valued the fullness of our lives while measuring our talents against his gifts. He strengthened our faith and challenged us to think outside the worldview we had for our lives. The world would lure us toward beauty, power, and intelligence. Having none of these, Rob’s life would show us the shallowness of these distractions and lead us to deep things: duty, humility, self-sacrifice, grace, and peace.
How, you might ask, could one so limited do this? If I were writing an earthly resume of Rob’s accomplishments I would have to say that he was included in numerous medical genetics research studies. His case study was included in a genetic conference in Paris in 1976. He was the subject of two television documentaries. He was included in a national film seen by President Ford and his advisor on mental retardation. People pursuing higher degrees wrote numerous special education papers about him. Safety measures were increased after his near-drowning accident at his school. Engineers developing artificial language equipment used Rob’s shortcomings to better understand and create resources that benefited others with language barriers (though Rob never benefited himself). His needs motivated us as his parents to become involved in legislative affairs that would benefit thousands of children and their families. He was the subject of an essay that his sister wrote to get into the National Honor Society. In it she wrote,
“Only by gaining an understanding of my brother, could I appreciate how important loyalty is in a relationship. If I had not remained loyal to him and had judged him on a superficial level, I never would have gotten to know such a giving, loving, and unselfish person. He has taught me more than anyone else ever could about looking deeper than the surface and enjoying everything for what it has to offer. By facing the stares of the astonished, dealing with the mockery of ‘his kind,’ and ignoring the comments not meant to be heard, I have learned what true loyalty is.”
What more would any of us hope to be said of our own lives?
The influence of Rob’s life has continued since his death. Through the book about his life, A Mother’s Search for Meaning: The Dance Goes On, thousands have been inspired by the use God made of his life. Publishing of the book brought newspaper articles, radio spots, speaking invitations, and a national television program aired on many TV stations last October. All this because of one life and the choices made to value it.
We live in a world that thinks these accomplishments have no worth, or at best are mere rationalizations. We live in a world that does not value what author Christopher de Vinck calls the “nobility of suffering.”1 After burying two infants in three years who were born with genetic disorders, mother and author Nancy Guthrie writes, “The world tells us to run from suffering, to avoid it at all costs, to cry out to heaven to take it away. Few of us would choose to suffer. Yet when we know that God has allowed suffering into our lives for a purpose, we can embrace it instead of running from it, and we can seek God in the midst of suffering.”2
Despite these words of great wisdom we live in a world that would not think twice about erasing such a life before giving it the opportunity to make any contributions. Even many who believe the termination of a normal fetus is wrong, question the choice to continue the pregnancy of an abnormal one. We live in a world that trusts man’s wisdom over God’s.
During Rob’s lifetime, many children like him were aborted, starved to death, and denied routine medical treatment because they were conceived or born different. Shortly after Rob’s birth a national story emerged. A Down syndrome child was denied routine medical treatment. The girl died of starvation. Years later an article in the Atlantic Monthly argued “if the life of a Down syndrome baby can be ended prenatal, why should it not be ended neonatally (just after birth)? The only difference between the fetus and the infant is that the infant breathes with its lungs.”3
Professors of Ethics, John Harris and Peter Singer, share this opinion. Asked what moral status he accorded an embryo, Harris responded by endorsing infanticide in cases where a child has a genetic disorder that remained undetected during pregnancy and suggested there’s no moral difference between aborting an unborn baby and killing an infant once it’s born.4 He went on to say, “People who think there is a difference between infanticide and late abortion have to ask the question: What has happened to the fetus in the time it takes to pass down the birth canal and into the world which changes its moral status? I don’t think anything has happened in that time.”5 In Charles Colson’s book The Good Life, this opinion is shared by Singer who “advocates infanticide for children born with defects.”6 Singer minces no words: “All I say about severely disabled babies is that when life is so miserable that it’s not worth living, then it is permissible to give it a lethal injection.”7 He rhetorically asks, “Why limit the killing to the womb?” As if to answer his own question he says, “Infanticide . . . should not be ruled out any more than abortion.”8
Pearl Buck, who was herself the mother of a handicapped child, writes, “. . . who dares to begin the process of elimination? For death is the least of the evil. The damage is done to the killer, not the killed. For those who kill harden their hearts not only to the killed but to life itself.”9
What do we say to such people? I believe we must use all of our abilities to be a voice for those who have none. I believe that each life has hope, meaning, and purpose. Each life is designed by God. Scripture reminds us of God’s love, “For I have redeemed you” (Isaiah 43:1); “I have called you by name” (Isaiah 43:1); “You were bought with a price” (1 Corinthians 6:20). These words are true not just for those who were formed “normal” on the outside but are words for all of God’s creation.
We must never lose the wonder of all of God’s creation for “our inmost being was knit together in our mother’s womb” (Psalm 139:13). We are all “fearfully and wonderfully made” (Psalm 139:14). We were “woven together” (Psalm 139:15) and God’s eyes saw our unformed bodies (Psalm 139:16). All our days were written in His book “before one of them came to be” (Psalm 139:16). “Before I was born the Lord called me” (Isaiah 49:1 NIV).
My hope is that each of us will be able to defend those who have no voice of their own, that we will embrace those who are less acceptable in the world’s eyes and in the process that each of us will be drawn closer to our Lord and Savior.
Roberta Bandy is a preschool teacher, devoted mom, and author. In addition, she currently serves as a Sunday school and Vacation Bible School teacher at her church. She and her husband, Philip, have been married for more than 30 years and are the parents of five children. They reside in Barrington, Illinois.
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De Vinck, Christopher. The Power of the Powerless. Doubleday: New York, 1988.
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Guthrie, Nancy. USA Today. July 16, 2002.
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Bard, Bernard and Joseph Fletcher. Atlantic Monthly, 221 (1968 Apr.), pgs.59-64.
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http://www.wnd.com/news/printer-friendly.asp?ARTICLE_ID=36763.
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Same as #4.
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Colson, Charles. The Good Life. Tyndale House Publishers, Inc.: Wheaton, IL, 2005.
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Same as #6.
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Same as #6.
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Buck, Pearl. The Child Who Never Grew. Woodbine House: Bethesda, MD, 1992.