Dragen, Here Is Your Letter
As part of America magazine’s centennial celebration, the editors are pleased to announce pleased to announce the America Essay Contest winner. At a time when atheism and religious belief have become prominent issues of discussion and debate in both our nation and our church, the editors chose as the general theme: “A Case for God.”
The topic, “A Case for God,” permitted an author to write from any perspective—personal, professional, academic, apologetic or devotional. The entries we received spanned the full range. Congratulations to Lyn Burr Brignoli, whose moving essay about the faith of a young boy with Down syndrome (see next page) stole our hearts, revealed something profound about God and won the competition and the $3,000 prize.
The competition was keen. We received more than 400 entries, a good number of which are of publishable quality. To every participant the editors extend a sincere thank you.
In order to determine a winner, we first narrowed the field to the best 80, which we sent to two independent judges, asking them to identify the top 10. Only two manuscripts appeared on both their lists. A committee of editors created a short list of five, including these two, and the entire editorial board then voted to choose the winner. A few of the authors mounted philosophical arguments; others told stories about themselves or someone else; still others reflected on personal experiences, global events, suffering or social injustice.
Karen Sue Smith
Dragen was 6 years old when he first came to me for religious instruction. Our director of religious education had never accepted a child with Down syndrome into the parish program before, and she did not really know what to do with him. Yet she thought I seemed like a natural for the job.
I had met our director only a few months earlier. I had never taught religion before. I had only recently been received into the Catholic Church during the Easter Vigil at St. Mary’s in 1998. Though I had no experience with Down syndrome myself, I was intrigued with the challenge: How do you talk about something as abstract as God with a child who has Down syndrome?
Dragen (pronounced DRAY-gun; his father is from Bosnia-Herzogivina) was small for his age, a bright, mischievous boy with a marvelous smile. He was already familiar with many prayers and the Mass. Ieventually learned that from an early age he had been attending Mass most mornings with his grandmother. He would enter our little classroom, look at the crucifix on the wall, put his arms out to his side and drop his head down, imitating the posture of Jesus on the cross, a gesture that unnerved me at first.
In our first weeks and months together, I was for the most part poking around in the dark. Not having any teaching materials and feeling inadequate to the task, one day I told him, “Jesus is in your heart.” We had been singing together along with a tape, “Thank you, thank you, Jesus in my heart,” when I said, “Dragen, Jesus is in your heart.”
Dragen looked away, as if disturbed, then moved into the corner of our tiny room and faced the wall. After a minute or so with his back to me, finally, he turned to face me.
“I can’t see my heart,” he said.
I went home that night thinking about his words. It came to me that I would need to create a visual metaphor to help him understand.
At an office supply store, I found a blank triptych that stood about as tall as he was. I pasted one half of a large red foam-board heart onto each door. Inside, on the center panel, I pasted an icon of Jesus and taped a wooden cross above it.
Dragen was delighted. He knocked on the doors of the heart saying, “Knock, knock. Who is it? It’s Jesus.” Opening and then folding the doors of the heart around himself, he was in Jesus’ heart, just as Jesus was in his. One day some months later, quite spontaneously, he took a small wooden cross from the table and, pretending it was a key, applied it to the red foam heart. It was as if he knew somehow that the cross was the key to Jesus’ heart and the key to opening his own. I was astonished. He had taken the visual metaphor and run with it.
The homemade triptych was only the beginning. I began to create more and more tangible materials for him. I realized then that something extraordinary was happening. While the “facts and concepts” of the faith seemed almost meaningless to him, the most spiritual aspect, the inner core of our faith, seemed to affect him deeply. We were communicating in the language of the psalms, using images and metaphors that allowed Dragen to articulate what he already knew of God himself. I was merely giving him a language to express it.
He loved our time together. “Is today Monday?” (our day), he would ask his mother each morning. He was growing and thriving spiritually, and so was I. My time with Dragen was launching me directly into my own experience of God—away from the linear, logical formulations of dogma, so often causing more confusion than clarification. Here on the boundary between this “other” person and myself was where I found God in a unique way. Dragen was moving me away from my head, from my academic training in calculus, chemistry and biology, from my years as a medical writer, into a deeper experience of God, beyond mere logic.
Pain and the Cross
Dragen and I were developing a wonderful relationship, learning to encounter God together. When I was with Dragen, I began to experience God as I did at no other time and in no other way.
Nevertheless, a cloud hung over our sessions. From the beginning Dragen’s mother had warned me that the doctors did not expect him to live long. Along with the Down syndrome and an array of other medical problems, Dragen was born with his bladder outside his body. Within hours of his birth the first of many drastic, life-saving operations had begun.
Pain was something Dragen knew all too well. Sometimes he would lie down on the carpet of our little room. “Does Mary love me? Does Jesus love me?” He was reciting “the pain litany,” letting me know that he was in pain, although he rarely complained, short of screaming when it became unbearable.
At the end of that first year, when he had just turned 7, Dragen underwent major surgery again. I went to visit him at home after a particularly lengthy hospital stay. It was a steamy August day; he answered the door in his underpants. I had brought along a tape recorder with one of his favorite tapes, “Jesus, Remember Me.” He took the recorder and disappeared into his bedroom, reappearing minutes later. He was holding the recorder to one ear, the music playing full volume. In his other hand he held a crucifix high over his head. Around his neck he had tied a towel, which was hanging down his back like a cape. Around and around the room he marched, singing. He was the priest, the choir, the altar server, the congregation—the whole church. He missed attending Mass, I realized.
After a while he went over to the sofa, lay the crucifix down, and began loosening the nails from Jesus’ body. He pried Jesus off the cross and kissed him, whispering, “I love you, I love you.” He was giving Jesus a break from the pain.
Not long after Dragen’s operation, his mother told me, she had come into his bedroom and found him naked on the bed, his arms outstretched. “What are you doing?” she asked. “I’m Jesus,” he answered, pointing to the new stoma surgically implanted in his side to accommodate a catheter. He was identifying with Jesus, wounded in his side, as he hung naked upon the cross. The cross had a profound, personal meaning for Dragen.
Dragen had entered into the metaphor of the crucifixion and was living out of it. By participating in his own crucifixion, he was also entering into the Great Crucifixion. Through the door of the particular, he was entering the universal. I saw then a child with mental disabilities experiencing God with all of his being.
When I began working with Dragen, my job was to “make a case for God” to a little boy with disabilities, yet over time it became apparent that he already knew God. But now, paradoxically, the task of making a case for God was shifting back onto me. It was becoming a personal question—how to make a case for God to myself in the face of suffering? Specifically, why does a loving God permit an innocent child like Dragen to suffer? Does such a God exist at all?
I had come to faith as an adult in a time of intense emotional pain. My childhood was also intensely painful. And I began to see that a lifetime of spiritual and emotional suffering had prepared me for this encounter with Dragen. From my own childhood I knew how “otherness” felt. Somehow I knew what it was like to be a child with Down syndrome in a culture that all too often regards people like Dragen with withering glances, that tosses out careless, unkind remarks, which are not lost on someone as sensitive as he is.
My own pain, transformed, was now a gift. It enabled me to see something in the core of Dragen’s being that was so magnificent I wanted to shout it out to a mostly deaf and blind world. My own pain had enabled me to draw closer to Dragen, to transcend the boundaries of doctrine and enter into the heart of God, where I had had to let go of the question of suffering and simply live out the tough day-to-day reality of it.
Dragen turned 16 years old this spring; the doctors say he has far outlived their expectations for him. At last count he had had over 50 operations, including, most recently, a kidney transplant. I have been with him now for 10 years.
Each time he goes into the operating room he seems completely stoic. “‘Be brave, Dragen. It goes better that way.’ That’s what Poppy [his grandfather] told me,” he said once, sitting up with the surgical cap on his head as he was being wheeled in on a gurney. He seems to know in his deepest elemental being the truth of Christ, not just about him. It appears that Dragen has completely and totally surrendered to God, while I still rail and question: God, what are you doing? Or I cry out: O God, please take him home; spare him more pain.
Over the last few months Dragen’s health has been deteriorating. When we are together we talk of his own death now. We visit each other frequently. On the days Dragen comes to my house, typically we go to the cemetery. His grandmother, “Nanny,” died nearly five years ago now, and he still misses her terribly. We sit on the grass in the graveyard in front of her tombstone, and we pray and sing together with a tape recorder blasting full volume, “Alleluia, He Is Coming.”
“Look at all these people who will welcome you into heaven.” I say, my hand sweeping around, indicating all the tombstones. “Hooray, Dragen! We are so happy to see you!” they will say; and Dragen claps his hands and grins, delighted.
After one such visit, Dragen asked me to write him a letter about death. I wrote...
Remember when you asked me, “Write me a letter about death”? I didn’t forget. So here is your letter about death.
In the Bible it says, “The Lord, our God, holds the keys of death.” This is true and real. This is what God promises us. And Jesus promises us. And Jesus always tells the truth. Because he is truth, he cannot lie.
When it is time to die, Jesus will come with a key to the door of death. He will open the door and then together with the angels and saints and Mary, the Blessed Mother, you will float up over the rooftops and trees and everything, and you will just float up to heaven with Jesus. You can just relax, because Jesus will do it for you.
It is good to die. Everybody is going to die. But only God knows when it is time for you to die. He knows the right time, and then he sends Jesus with the keys to the doorway. God knows what is best for each person.
The Bible tells us that heaven is the holy city of God. It is where God is living with all the people who belong to God, like Nanny and Poppy and Christina and Richard. God is always there with them. The Bible says there is no crying in heaven. No more sadness. And there will be no pain in heaven. In heaven God will make all things new—including your body! You will have a new body in heaven.
God loves you so very much, Dragen, more than 480 large houses! You will be so very happy with him.
Who will cry when you die? Most of all, Mommy will cry because she will miss you. Your Dad will cry. Aunt Jeanie, Aunt Dede, Aunt Dottie, your cousins, Cathy and Walter, Father Bob, Sister Mary Frances, your friends and teachers, the bus driver, the doctors and nurses and your aides will cry. And of course, I will cry.
But then we will remember that Dragen will have no more pain and Dragen will have a new body in heaven! And then we will remember that Dragen will be so happy to see Nanny and to see Jesus and Mary. And that thought will comfort us and make us smile. We will hold you close to ourselves in our hearts. We will still feel you with us, and then when we die, we will all be together!
I love you,
Dragen’s suffering has drawn me into the tangible, living crucifixion of Jesus where I am crucified myself and humbled and where all my questions melt away. Yet as I enter into the crucifixion with Dragen, somehow, paradoxically, I am able to catch a glimpse of the compassionate God.
Here is where God resides—on this boundary between “the other” and myself. I do not confuse Dragen’s gifts with my gifts, but rather I am able to participate in his gifts just as he is able to participate in mine. My own gifts are honed in the process; my love becomes so much bigger than myself. Here, too, I become more compassionate. I am, therefore, living a transcendent life on this border between myself and Dragen. Is this not God—Jesus himself living in me, living in Dragen, in this place where we meet?
The only way I know to articulate this encounter is in the language of poetry.
I feel the dimensions of truth in image—“the keys to the doorway of death,” the verse from the Psalms. I can see the keys, I can hear them jingling on a key chain, I can feel them cold against my skin and taste the metal on my tongue. This image engages all of my being, as my own death will also do. This biblical description of death is truth, albeit not on a literal level, but it is a truth that carries me beyond a merely logical mindset, away from an arid, thirsty land without hearing and seeing, without feeling, without music, without singing—and without poetry.
“Write me a letter about love?” Dragen asked me the last time we were together.
“Dragen, here is your letter about Love.”