I am the blessed father of eight children – six girls and two boys. My youngest child, Mary Evelyn was born May 2, 2005. Since abortion is not an option for us, my wife, Mary Rider, who was 45 when Mary Evelyn was born, and I, did not opt for prenatal testing.
Mary Evelyn was born with Down syndrome, something I knew little about and something that scared me. Mary Evelyn – like many children with Down syndrome – had several heart defects that required surgery when she was just 7 months old.
Now, a decade later, Mary Evelyn has a healthy heart, and she is a delightful child. In fact, like most parents of children with Down syndrome, it is not even something I notice about her. She is just our daughter, and we are overjoyed to be her parents.
Mary Evelyn has few social boundaries. She thinks nothing of hugging complete strangers, and she happily speaks to most people she meets. If she is riding in the car, she will frequently wave to the person in the car next to her. At a red light, Mary Evelyn will often roll down her window to say, “Hello,” to the person in the car next to us.
I have fond memories of many people saying aloud: “Little girl, you just made my day,” after Mary Evelyn has given a hug to a stranger. In a nursing home we recently visited, Mary Evelyn pretended she was a doctor and visited patients, most of whom were very happy to see her.
On Dec. 28, while we were visiting Washington D.C., my daughter, Annie, my son, Michael and Mary Evelyn met Kenny Sway, a vocalist with a street band in Chinatown. While watching the band, Sway and Mary Evelyn danced while Sway sung, “I Will Always Love You,” to her. Someone videotaped the serenade, and the next thing we knew, thousands, tens of thousands and then millions of people watched that videotape as it went viral on Facebook.
The next day, now back in Garner, we received a phone call from a Washington D.C. television station asking to interview Mary Evelyn, Michael and Annie on Skype. Now, Mary Evelyn made the 11 o’clock news.
However, when we watched the news report on the network TV station, the reporter said of Mary Evelyn: “The 11-year-old who suffers from Down syndrome.” While that might be the prevailing societal sentiment that someone “suffers” from Down syndrome, that is not the way we see it.
Mary Evelyn “has Down syndrome,” is what my wife says is the better word choice. We don’t perceive Mary Evelyn as suffering.
Soon after Mary Evelyn was born, my wife and I joined the Triangle Down Syndrome Network, a support group for parents of children with Down syndrome. TDSN families like to think of our children as “differently-abled,” rather than disabled. We also don’t like the word handicapped to describe our children – and we loath the word “retarded,” which is still in common use.
Sadly, the number of people living in the world with Down syndrome is declining. Since the onset of prenatal testing – now a common option for pregnant women – the population of people with Down syndrome has declined about 30 percent worldwide. That number is expected to keep growing as more and more mothers opt to abort fetuses that prenatal tests show are not “normal.”
TDSN also offers a “new parents meeting” and more than once I have met couples who have not yet had their babies, but have had a prenatal diagnosis for Down syndrome, who have attended the meeting. Twice, the mothers-to-be were crying, but not because they were expecting a child who might have Down syndrome, but because they had experienced pressure to have abortions, and they did not want that option.
There are even people who feel like a mother with a positive prenatal diagnosis for Down syndrome has an obligation to abort. If everyone took that path, however, eventually there would be very few people with Down syndrome left in this world, a prospect I find unsettling.
In the grand scheme of things, I like to believe God makes each of us purposefully, and with unique characteristics and specific gifts to bring to this world. If that’s true, then God wants us to recognize that people with disabilities are also made in the image and likeness of God, and play a perfectly unique role in life’s journey, which we are all part of together.
While there are no clear-cut statistics in the U.S. regarding how many women who receive a prenatal diagnosis for Down syndrome opt for abortion, it is certainly higher than 50 percent.
The late disabilities rights activist, Dr. Adrienne Asch said: “The only thing prenatal diagnosis can provide is a first impression of who a child will be. Making such a radical decision as to end the life of a child based upon a first impression is a most horrible and violent form of discrimination. It has no place in an American society that is committed to ending discrimination in any form ...”
Now, more than five million viewers have watched Mary Evelyn and Kenny Sway’s video. It has clearly brought joy to the world. I am so glad Mary Evelyn is part of our wonderful world.
Patrick O’Neill and his wife, Mary Rider, are co-founders of Garner’s Fr. Charlie Mulholland Catholic Worker House, which provides hospitality to people in crisis. This essay originally ran in the the Garner-Cleveland Record.