My brother, Jack, and his wife, Rosie, raised four wonderful children, each of whom are loving, caring human beings who contribute to the good of society.
But Jack and Rosie didn’t have the chance to fully raise a fifth child. Barbara, whom we called “Barbie,” died at age 4 in 1959. She had cystic fibrosis.
For those unfamiliar with the disease, cystic fibrosis is a genetic disorder which causes the lungs to produce extra-thick, sticky mucus that builds up and clogs airways. Though CF is still considered incurable, much progress has been made through medications, exercise and diet management. The average life expectancy for a child born with CF in 1959 was 6 months. Today it’s 37 and steadily rising.
Barbie’s life was short, but full of love and support. Her sister, Karen, who is two years older, recently shared her memories. She recalls that after coming home from school, she and Barbie would sit on the top step of a staircase and talk about what happened at school. Through Karen, Barbie attended school vicariously.
The adjective that came to mind for both Karen and me in recalling Barbie is “sweetness.” Said Karen: “I never remember her complaining. She accepted her illness. I can’t speak for her, but I believe she loved and cared for everybody, and she was a joy to be around.”
I began thinking about Barbie because I read an article in America magazine about a woman who several years ago gave birth to a son with cystic fibrosis and sued her midwife for “wrongful birth.” The woman wrote a magazine article saying that the midwife failed to diagnose CF in the womb and that had she known about the CF, she would have had an abortion. I couldn’t find information on the outcome of the lawsuit.
I’m not judging the woman. I can only imagine the devastation such a diagnosis could bring. Who knows how any of us would react? But because “pro-life” was prominent in the recent election campaigns, the case caused me to reflect further on the meaning of the term and how it impacts the search for God.
As I’ve mentioned many times in these blogs, a major tool in the search for God is the attempt to be God-like. And religious practice, in my opinion, is a major help in that effort. Sacred books, including the Hebrew and Christian Bibles, attempt to describe God’s attributes, and the overwhelming image of that God is one of a caring parent who loves us despite our infidelity.
My own Catholic faith describes life as God’s greatest gift and teaches (but does not always follow through in practice) that human life is sacred and that the dignity of every human person is the foundation of a moral vision for society.
The church’s opposition to abortion is well-known, but its teaching on “pro-life” also applies to euthanasia, capital punishment, treatment of immigrants and refugees, the right to a living wage, the right to health care, and many other issues.
From my observation, we’re moving toward an attitude of indifference toward life – creating what Pope Francis calls the “throw-away society” – in which marginalized people are unimportant. This kind of society is often depicted in dystopian books and films. Many of them, such as The Hunger Games, portray government-controlled programs in which “the quality” and status of people are controlled through euthanasia and genetic engineering.
An outlandish idea? Euthanasia was already widely practiced by a government over 70 years ago when Nazis systematically killed people with mental and physical disabilities in an effort to remove from the population people it considered genetically defective and a financial burden to society.
A stubborn defense of ALL rights to life, in my view, is what stands between us and any repeat of that idea.
So was Barbie’s four years of life worth the financial and many other problems her life caused her parents and other family members?
“Absolutely,” said Karen. “Whatever she could do, she got so much joy out of it. I am so glad to have had her as a sister.”