Twenty-two years ago, on St. Patrick’s Day 2002, my wife and I were given the gift of our son, Leo Patrick, who was born with Down syndrome. Actually, to be more accurate, we had been given the gift nine months earlier but we couldn’t see him and hold him until he was given to us at the moment of birth. He has been a joy and a challenge but most of all a blessing. He has taught us patience and perseverance but, most important, he has taught us to love more deeply. Is there a greater blessing than this?
As the parent of a child with Down syndrome, I have found myself particularly moved by three books which help us understand those who have been gifted with trisomy 21.
1Jérôme Lejeune: The Saintly Geneticist
The first is a newly published and beautifully illustrated book for younger readers, Jérôme Lejeune: The Saintly Geneticist, a brief biography of the devoutly Catholic scientist who discovered the extra chromosome that causes Down syndrome. This handsome hardcover volume, resplendent with full-color art on every page, is published by Word on Fire Spark, the children’s imprint of Bishop Barron’s Word on Fire Catholic Ministries. The author, Ana Braga-Henebry, writes well, respecting her young readers but never patronizing them.
Speaking of the understanding of Down syndrome in 1958, the year in which Dr. Lejeune made his groundbreaking discovery, she writes:
“At that time, most people thought that Down syndrome was caused by something the children’s parents had done. Dr. Lejeune didn’t agree. He thought it was because of a difference in the children’s chromosomes. Chromosomes carry the information to help make our bodies work.”
Horrified that his discovery was being used as a means of culling “defective” children, Dr. Lejeune was outspoken in his defense of human life and the dignity of every human person. Again, the author expresses this with simplicity and succinctness, and with clarity and charity:
“When people began testing babies for chromosomal differences before they were born and making decisions about their future, it made Dr. Lejeune very sad. He knew many would choose to end the lives of their babies with Down syndrome... He thought of all his wonderful patients and the joy they brought to everyone around them.”
2The Book of Jotham
The second book is altogether different. The Book of Jotham by Arthur Powers (Tuscany Press, 2013) is positively sylphlike in its levity and brevity. A novella of only a few dozen pages, it is the story of Jotham, a mentally disabled disciple of Christ, probably gifted with Down syndrome, who sees the life of Christ with the eyes of simplicity reserved for the Holy Fool.
This book is an eye-opener. The moment we begin to read, we are taken out of ourselves and into the mind of Jotham, a mentally disabled youth who is one of the disciples of Jesus Christ. He follows Jesus without understanding much about who he is. But he knows that Jesus loves him. And Jotham loves Jesus with untainted purity, with the unconditional love of the truly innocent.
He also feels the love of Jesus’s disciples -- except, that is, for Judas, who doesn’t understand why Jesus tolerates the idiot in their midst. Jotham doesn’t understand why Judas doesn’t understand. Or why Judas doesn’t see the purpose of having him around. Jotham doesn’t understand understanding. He doesn’t see the purpose of anything. What purpose? Jotham only knows that he is loved by Jesus, and by the disciples of Jesus. And he loves them. What is there to understand?
As we close the final page of the book, we know that we have seen through eyes wide open with childlike wonder and, in doing so, have received a glimpse of the kingdom of heaven itself.
3The Violent Bear it Away
The third book, The Violent Bear It Away by Flannery O’Connor, is dark and grotesque. It is the presence of Bishop, a mentally disabled character presumably with Down syndrome, who enables us to see into the hearts and minds of the other characters. Bishop’s father resents him, seeing no point in him, considering him an imposition and a curse, treating him with cruelty and contempt. By contrast, Bishop’s uncomplaining innocence serves as an unwitting foil to his father’s wickedness. As the innocent victim of the sins of others, Bishop becomes the unwitting Christ figure. Paradoxically, it is the child with Down syndrome, the character in the novel who has nothing to say, who speaks loudest.
It has been said that most of us are here to learn but some of us are here to teach. Those with Down syndrome are here to teach. This is the lesson that Bishop teaches in The Violent Bear It Away. It is also the lesson that these three books can teach us about the blessings that the weak and meek bestow upon the strong.
