Three years ago, my wife and I headed to the hospital. We prayed for a safe delivery. After being admitted, we waited. A few hours later we celebrated the birth of our son, Silas. What can possibly compare to hearing your child take his first breath of life?
Yesterday morning my wife put three candles in a cinnamon roll. We sang Happy Birthday. We celebrated after Silas blew out all three candles in one breath. Last year, Silas could not blow out candles. Blowing out candles is a big milestone for any child carrying around an extra chromosome in every cell of his body. Silas’s big brother and sister cheered. Mommy and Daddy were filled with pride. Silas gave himself applause (he likes to clap his hands), and he laughed.
It’s often said that time flies when you’re having fun. The past three years have flown by. And, indeed, we are having a blast. But raising a child with Down syndrome is not all fun and games. There are new concerns, new responsibilities, new anxieties, and new milestones. Today, as we celebrated Si’s achievement of blowing out candles, I was reminded that he is … different.
Thankfully, after spending the past three years of life with Silas, I am different, too. I am no longer fearful of those with disabilities. I do not feel sorry for families with disabled children. Nor do I feel sorry for those with disabilities. Instead, I have come to know the truth of the words of Christ: “Blessed are the poor in spirit, for theirs is the kingdom of heaven … Blessed are the meek, for they shall inherit the earth.”
Silas McFarland
No, raising a child with a disability is not all fun. But it is blessed.
Part of the blessing is realized by witnessing those who’ve dedicated their lives to securing human flourishing for others. Doctors, nurses, speech therapists, occupational therapists, educators, lawyers, volunteers, and so many others give their time and energy to improve the lives of those with disability.
When Si was a baby, his blood counts were off and the doctors were concerned about the possibility of leukemia (the incident of leukemia in children with Down syndrome is much higher than the “normal” population). My wife and I encountered one of the most amazing doctors we’ve ever met at Children’s Hospital in Birmingham, Alabama. A man who dedicates his life to childhood cancers spent almost an hour with us explaining with great skill and care the possibilities for Silas. I remember thinking that day that the goodness of humanity is most evident in dark places; like the cancer wing of a children’s hospital. My son was not a burden to him – it was clear. No, caring for my son (and others like him) gives meaning to this brilliant doctor’s life. It was clear to me that as this skilled physician blessed us with his professional advice and care, our son blessed him.
Many of our laws now recognize that disability is not something to be feared. The Americans with Disabilities Act of 1990, the Individuals with Disabilities Act of 2004, and numerous other federal and state laws offer protection and security to those with disability.
Nevertheless, there is still room for improvement.
Early in the 20th Century (before the world witnessed the horrors of the Holocaust) the eugenics movement was thriving in the United States. Several states passed laws authorizing forced sterilization of those with certain disabilities. In 1927, the United States Supreme Court upheld one such law in the case Buck v. Bell. Writing for the Court, Justice Oliver Wendell Holmes, Jr. declared: “three generations of imbeciles are enough.” Only Justice Butler dissented.
Eugenics as a matter of public policy fell out of favor after World War II. However, families, and especially mothers, expecting children with disabilities face pressures to terminate pregnancies whenever there is a diagnosis of disability. Although the numbers vary, there is considerable evidence that a prenatal diagnosis of Down syndrome significantly reduces the birth rate of children like Silas.
Before birth, it is very hard for parents to appreciate the great blessing that comes from walking alongside children with disability. Instead, one’s mind is full of fear, anxiety, and disappointment upon learning that one’s child is not “normal.” In such a circumstance it is very difficult to realize how disability, despite its challenges, brings great blessing into the world. Indeed, in the moments following Silas’s diagnosis my fears were so great that I could do little other than pray.
Some states are now recognizing the need for laws offering protection for those with disabilities. North Dakota recently became the first state in the country to prohibit elective abortions motivated by genetic defects. Missouri and Ohio are now considering similar legislation. These laws recognize that eugenic cleansing of society impoverishes humanity. Fear is a powerful motivator, and a mother’s decision to terminate a pregnancy because of her fears regarding Down syndrome is not difficult to understand. But fears quenched by death do not give life. Life is best lived on the other side of those fears – with those we once feared.
I am thankful for the blessing of life – and especially, today, for the blessing of living it with Silas. Happy Birthday, Si. You have blessed my life.
Rob McFarland
Robert L. McFarland is Associate Dean of External Affairs and Associate Professor of Law at Faulkner University’s Jones School of Law.
