Joseph P. Dutkowsky, MD
The Canto Grande Trilogy
Joseph Paul Dutkowsky, MD, KM
You always start with the eyes. Are they attentive; do they respond to your face and the movements about the room? Is the brain behind the eyes taking in all that happens about the little person? Then the hands. How do the fingers work? Are they supple and free; are the movements deliberative and directed? Then the feet...and so it goes. The child’s mother sits quietly but attentively. Hoping for a miracle and trying to find some of the joy she remembers awaiting the birth of this child. Her dreams of a perfect baby dashed by the reality of the handicapped child in front of her who once lived in her womb. It is only maternal love that keeps her from running out the room and escaping the truth that’s part of those eyes, hands, and feet. This could be in New York or Boston or some small town, but today it is in Canto Grande, in San Juan de Lurigancho , a district of 900,000 people in Lima, Peru.
Canto Grande is made up of small, homemade buildings pressed against each other with bars on the doors and windows on the edge of roads without names, pavement, or signs. Traffic laws are suggestions at best. Small cars and motorcycle buggies cut each other off in a motored ballet without rules. Buses pass by with one man driving and another calling and hanging out the door hawking passengers. Poverty is unlike anything experienced in the developed world. And yet as one goes up the hill the poverty becomes more intense (I know no better word). The homes become sheds at best. Each day finds new sheds made out of anything one can scrounge and support against a cutout in the rock and dirt hillside. In June the sky is never blue and the sun never shines as the air is filled with a low lying haze and air pollution. I will not see the stars in a week. But mostly there are dogs and children and dust. Nothing grows without irrigation and rain is not to be expected. A layer of dust covers every sign, roof, and your eyelids when you’re outside for more than an hour.
I am a pediatric orthopaedic surgeon specializing in the care of children with disabilities. In this week I will have children on my lap with cerebral palsy, spina bifida, muscular dystrophy, Down syndrome, and the list goes on. I have come at the invitation of the Holy Cross Fathers to see if I may assist in the care of handicapped children in this barrio that they call home. I am privileged to work beside some incredible people who work at a special place called Yancana Huasy where people with disabilities are loved and respected as fellow children of God and are given a chance to work and create. But in this culture, as in our own, there is often a sense of shame in having a handicapped child. So I join some workers of Yancana Huasy making house calls across Canto Grande. I ride the buggies, the buses and taxis, as we go across this endless barrio. I walk the streets coating my shoes, shirt, and pants in dust. No one turns us away when we knock on their door. They bring the children out into the main room and I examine them. Through an interpreter I try to find ways to compliment them on the care of their child and try to make suggestions to help. As in my clinic at home, every parent wants to know if their child will walk.
Soon it became clear to me that cerebral palsy, spina bifida, muscular dystrophy, and Down syndrome look almost identical in Peru as in upstate New York. Just here the hair is nearly black, the skin is coffee colored and the eyes are a beautiful dark brown. As I walked the streets dodging dogs, smiling to children, and breathing the dust that is becoming caked on my clothes I suddenly found myself feeling very much at home. At one point I stopped, looked around and had to remind myself that I really didn’t live or work here. It astounded me that in less than four days I felt as though these people whom I had never met were my colleagues and coworkers and that I belonged in this place. Given that this was their home and they did this day in and day out I could only attribute the feeling to the openness and generosity of spirit that these workers freely gave me.
After working several days I took one afternoon and visited downtown Lima. Here the streets are named and lined, and the sidewalks are clean with painted curb cuts for wheelchair travelers. A few blocks from the main basilica was my destination, the monastery of Santo Domingo. Upon entering I was met with the sound of beautiful music as I came upon the main chapel. There, on the altar, was the real presence of Jesus Christ in the monstrance. To enter this place with adoration was perfect. I continued on past a Spanish style courtyard with a rose garden surrounding a central fountain. The sides of the courtyard were lined with hand made tiles that predated the pilgrims landing at Plymouth. Down one further hallway and I stood before the small chapel. There on the floor, half way to the altar on the left, was the grave of St. Martin de Porres.
Four decades earlier I had chosen this newest of saints for my Confirmation. This bastard son of a Spanish nobleman and a native slave lived in the late sixteenth and early seventeenth centuries but was only canonized by Pope John XXIII in 1962. He was a humble man who took the vows of a Dominican brother and is always pictured with a broom in his hand. Yet God blessed him with the gift of healing and many people came to this place to receive his care and ministry. His infirmary was this very chapel in which I stood and where he lies to this day. As I knelt down to touch his grave marker I was overcome by an emotional burst that this engineer turned surgeon did not expect. Never when I chose his name for my Confirmation did this small town boy ever expect to be a doctor much less travel to Lima, Peru. Outside of the chapel were two murals depicting the miracles that led to his canonization. One painting was of a shocked surgeon leaning over a boy who was to have his crushed foot amputated only to see it healed. I could relate to the face of the surgeon all dressed and prepared to operate. I thanked the Holy Spirit that he had graced me with the opportunity to share with my saint in taking care of the children of this place before visiting where he worked, prayed, and lived out his calling.
Every evening I attended Mass. One of the great joys of the liturgy is that even if you don’t understand the language you can participate in the sacred rite. I attended Mass in churches with roofs that were permanent, temporary, and one with no roof at all. That day we traveled by bus through sections of the barrio called “the mouth of the devil” to the “hand of God”. The church was a brick shell that was being erected in the place where the previous church had been burned to the ground. In the windy, cool, damp mist that Sunday morning it was standing room only. I noticed that every Mass was well attended with an active music ministry. The lay people were not a superstitious passive audience but a spiritually and cognitively attentive and involved congregation. After one evening Mass I noticed three large groups of lay people being trained for ministry in separate areas of the church depending on their place in a three year formation process. The lay leadership training in the churches of Our Lord of Hope Parish is a model built on the intent of the Vatican II bishops that if transferred here would change, cleanse, and invigorate the church in America.
At each church there were side rooms which were designed as a basic health clinic. The Holy Cross Fathers and Sisters got it exactly right. Instead of building a large hospital in the center of Canto Grande, they have focused their energy and resources in church community based healthcare. There will be times that an individual will need extended care in a hospital but clearly the vast majority of the population can be cared for medically within their local area in the shadow of the church that nourishes them spiritually and sacramentally. It brings a tangible reality in the poverty of the barrio to the words, “The Cross, Our Only Hope”. I’m thankful that I worship in a church where there is no requirement of physical health, intellectual capability, or financial status to receive the sacraments. For there is no separate cross for people with cerebral palsy, no separate cross for those with Down syndrome or spina bifida, and no separate cross for the poor. When Jesus was lifted on the cross he took upon himself all the sin, pain, anxiety, and tears of all people for all time. It is a mystery I do not understand but know without doubt to be true.
No child comes into this world thinking they’re handicapped. It is something we must teach them. Likewise no child knows that they are poor until we show it to them. They are not born with the hopelessness that comes from crushing poverty or the anger that often emerges from a sense of being trapped. We must teach them about injustice. Yet is it possible that through love and sacrifice and touch that one can unlearn hopelessness, despair, and disability? I think St. Martin understood this nearly four centuries ago as he walked in the dust among the children and dogs of Lima. I am just one person who worked for less than one week in this place of deep poverty. But I was there long enough to be a witness to the incredible work of the Holy Cross Fathers and Sisters and the growing number of indigenous lay people and clergy that are taking their place in church, education, and healthcare leadership. I found in the people of Canto Grande a sense of disquiet that maybe the despair wasn’t so deep or the situation for themselves and their children without hope. It starts as confusion as the rock-wall reality of poverty that they have been taught to accept appears to have a few cracks. It is a dangerous dream of the possibility that their presence and willingness to invest in their community might indeed make a difference in their lives. It’s a candle that flickers but now it’s lit. You won’t hear it in their conversations or find it written on their walls.
But you can see it in their eyes.
Joseph Paul Dutkowsky, MD
Baby Aroma died last month.
She was only four months old when I met her. A long awaited child for these parents, through no choice of her own, she came into the world with Down Syndrome. As I looked into her innocent face I searched for words in which I could encourage this mother as she struggled to bond with her daughter. But the struggle would not stop with Down Syndrome alone. Within several months, with problems with growth and feeding, a new issue would emerge. Through no choice of her own, a blood count revealed Baby Aroma had leukemia. Leukemia is more common in children with Down Syndrome and the type they get is often particularly sensitive to treatment and sometimes even curable. But Baby Aroma, though receiving the finest treatment available, through no choice of her own, would succumb to the disease before she was a year and a half old.
Born to professional parents, Baby Aroma entered this world with their anticipation of expanding a loving family in their comfortable home in Lima, Peru. Her mother, a psychologist, worked sharing her expertise within a church sponsored program serving the needs of children with disabilities in the poorest section of the city. I, an outsider, had come to volunteer my medical knowledge and skill in the care of these children and their families as well. And so our paths crossed.
Never will I forget the face of Baby Aroma. Gentle and peaceable, innocent and friendly, one feature dominated all others, her eyes. Those beautiful Peruvian brown eyes reached into my own and spoke in words that no earthy language can confine. It was her eyes that gave me a focal point to try and bring some cohesion to the cacophony of overwhelming emotions, thoughts, and experiences that attended my week working in the barrio of Lima last year. The essay which I wrote to describe those days was entitled, “The Eyes”.
I had been to one infant’s funeral in this barrio known as Canto Grande. The priest, with whom I was working, had just finished evening Mass in a semi-outdoor church with a temporary metal roof. We had planned to get something to eat when just outside the door we came upon a young man. He was in his early twenties and told the priest that his wife had a third term miscarriage early in the day and asked if he could come and bless the dead child in their home. Dinner could wait; off we went deep into the barrio in a three wheeled taxi built on a motorcycle. We traveled up the hill into the worst section of all to an area known for unimaginable poverty, violence, AIDS, and drug resistant tuberculosis. The home was a shack at best housing multiple families. The front door was a head to foot cut in a piece of plywood and the window was another piece cut out at waist level. Neighbors gathered as the priest and the doctor entered the home. What we saw upon entering was right out of Kafka.
To the right of the door were two large candle stands on the dirt floor flanking a kneeler. Just beyond the kneeler stood a table with a box containing the dead premee. Her tiny body lay dressed in a long white baptismal gown. The room fell silent as the priest began a service to bless the infant. Suddenly, without warning, a child around ten years old swung around the corner. He clearly had autism and his entrance threatened any calm in the room. An older sibling quickly gave him a hug and maintained it throughout the wake service. It’s ironic that, later, the priest told me that he was not sure what to do when the autistic child entered screaming while I was thinking that there was finally something happening that I could handle.
I’ve been told that Baby Aroma’s funeral was very different. Though full of deep sorrow, a very warm wake service was held in the apartment of her parents, and the following day a public ceremony was held in a very pleasant cemetery presided by a priest in a spirit of thanksgiving and reverence. It was remarkable how many people attended, many of whom were almost never seen at funerals. As different as the services were they were similar in one thing. Both families grieved deeply at the loss of their child whose life had so briefly graced their homes.
Baby Aroma was born into a middle class family to professional parents but the presence or absence of education and relative wealth could no more save her life than of the premature infant in the barrio. Disabilities cross all nationalities, economic groups, cultures, and faiths. Yet we also know that they occur more frequently in areas of poverty and that poor children are typically afforded the least chance for treatment or education. In the paternalism of The Cold War we called it The Third World. In today’s reality it is more accurately called The Two-Thirds World.
I still marvel on the effect Baby Aroma’s eyes have upon me. From what I’ve heard of her short seventeen months on this earth I am but one of many. They say the eyes are the window to the soul. Maybe in Baby Aroma’s case her eyes were not a window but in fact a mirror. Looking in those eyes it is just possible that we did not see ourselves as we are, but saw who we truly could be.
Shalom, Pacem, Salam, Baby Aroma.
Joseph Paul Dutkowsky, MD
Baby Aroma was born in Lima, Peru, a city of nine million people cramped together in a narrow strip of land between desert and ocean. For years her parents had waited and hoped for a child of their own to love and raise. Those hopes turned to confusion, shock, and sadness upon her birth when it was discovered that she had Down Syndrome. Their plans for their family’s future taken from them, they took Baby Aroma home and tried to adjust their lives and hearts to having a child with a disability. It did not take long before problems were noted in the feeding and growth of their daughter. Blood tests showed that Baby Aroma had leukemia and the parents’ sorrows compounded. They sought the best medical treatment they could find but Baby Aroma would die before she was a year and a half old.
Eleanore was born in Montana amid the big sky and expansive landscape of the American Northwest. Her parents, too, had yearned for a child to love, nurture, and watch grow as she ran across the fields. But Eleanore was born with cerebral palsy and would never walk much less run across any field. Her waking hours would be spent in a wheelchair which would position her to minimize the spasms and undesired movements that characterize cerebral palsy. Her parents took her home, surrounded her with love and care, and built her needs and limitations into the daily life of their family. And so it went until six days before her twelfth birthday when pneumonia would take Eleanore’s life from her.
Two lives that contemporary culture considers without meaning. Lives that consumed and wasted limited material and monetary resources with no return to society. Such is the wisdom of contemporary society. A wisdom founded on the shallowness of a narcissistic culture that seeks to satisfy one’s immediate desires, and measures human worth on the success or failure of one’s ability to achieve that goal. It is a modern-day creed that mocks the Author of Life and His creation. And it is fundamentally wrong. For, together, these two children accomplished what no army, politician, or businessman could have achieved. It remains possibly the most remarkable thing this doctor has ever witnessed.
I am a pediatric orthopaedic surgeon specializing in the care of children with disabilities, and I practice in upstate New York. Four years ago a priest came to our church for a missions appeal. He described the work of The Holy Cross Fathers to establish clinics providing care for children with disabilities in the barrio of Lima, Peru. I leaned over to my wife and said that somehow I was going to be part of that effort. After Mass, I spoke with the priest and requested his card. Months passed as the demands of my medical practice kept me consumed with work. But I never forgot about Peru and, eight months later, I looked for the priest’s card. I had lost it. Remembering that he was a Holy Cross Father I searched the internet and managed to contact the Eastern Province of The Holy Cross. They knew who the priest was that I was talking about and put me in touch with his Holy Cross colleagues in Peru. I managed to clear a week in my schedule, bought a ticket, and flew to Lima.
The flight landed at midnight. After clearing Immigration and Customs I picked up my bag and exited through two sliding opaque glass doors into a roped off lane between two great masses of people. In the crowd of humanity I spotted a man with a sign that said, “Hello, Dr. Joe”. I walked up to the man, shook his hand, and met Father David Farrell. During the early morning ride in the old van to the barrio known as Canto Grande, Father David asked me why I was there. I said I wanted to be useful. He questioned me further. I asked if they had any children, especially those with disabilities. He said they had a huge number of such children. Then I told him I could be useful.
Later that morning I was taken to a place called, Yancana Husay. Packed into a space surrounded by an out-door market and bazaar was an oasis of hope in what appeared to be an endless expanse of destitution and crushing poverty. Here, brick buildings held classrooms for children to learn a skill, or for parents to learn to care for their children with special needs. I saw rooms where disabled children and adults worked producing goods that could be sold in Peru and abroad, and a therapy space where dedicated therapists worked to prevent the contractures that cause pain and limit children with cerebral palsy and other disabilities. Visible through a hallway were benches in an open space covered by temporary metal slabs that acted as a church of the Our Lord of Hope Parish. Beside this space, a clinic to be named for Brother Andre, the healing doorman of Montreal, was being built.
During the next six days, both within Yancana Husay and through house calls across Canto Grande with Yancana Husay staff, I saw children with every disability imaginable. I offered what I could knowing the great limitation of treatment opportunities available to the people I worked beside. Yet, despite their lack of resources and a clearly impossible task, these workers at Yancana Husay cheerfully sought out and attended to the needs of disabled children and their families in this barrio of 900,000 people. I marveled at their dedication and service to the neediest of this community of nearly unimaginable poverty. I kept copious notes of everything from an individual child’s diagnosis to observations from the buses we rode. These handwritten notes, I was sure, would provide me with the memories to write an article for The Holy Cross when I returned.
Upon my return home, I found the realities in Canto Grande to be so overwhelming that I couldn’t write about my experience for three weeks. I had received far more than I had given, but could come up with no idea or storyline that didn’t seem to trivialize the situation or the work of the people at Yancana Husay. Finally, I forced myself to sit at my computer. I looked over at my notes sitting on my desk, folded in the envelope I had placed them in before leaving Peru. However, I didn’t reach for them; I couldn’t reach for them, and they remain in that envelope on my desk to this day. My mind just wouldn’t let go of the image of the face of an infant I had examined on my lap at Yancana Husay. The face of a beautiful four month old baby girl with Down Syndrome named, Aroma. The penetrating beauty of her eyes would not leave my mind and I wrote an essay entitled, “The Eyes”, which was printed in “Signs of Hope”.
I serve as the newsletter editor for the American Academy for Cerebral Palsy and Developmental Medicine, the premier academic academy of professionals who care for children with disabilities. Other academy members had worked in third world countries before so I included an edited copy of “The Eyes” in the academy newsletter. While browsing through the newsletter, a therapist in Montana read “The Eyes” and gave a copy to her friend Tamara Kittelson-Aldred. Tamara is an occupational therapist who specializes in seating systems (special wheelchairs) for children with disabilities. Tamara’s daughter, Eleanore, had cerebral palsy and required such a wheelchair for her daily life before dying of pneumonia. In their grief, Tamara and her husband, Rick, started a ministry of providing and fitting specialty wheelchairs for children with disabilities in third world countries, and had even done some work in Peru. Their ministry is called Eleanore’s Project.
Excited at the possibility of working together Tamara e-mailed this doctor she had never met. She would be going to Peru in five weeks and she asked if I would arrange for her to meet Father David and the workers at Yancana Husay. I e-mailed Father David and he agreed. They met in Canto Grande and immediately realized that together there was a possibility to provide for many of the children with profound needs who are served by Yancana Husay. This past fall Tamara e-mailed me again and asked if I would join the team from Eleanore’s Project on a two week trip to Peru to help fit 200 children with special wheelchairs, the first 50 being at Yancana Huasy. I readily agreed but could only clear my schedule for five days.
The trip was nothing short of amazing. Yancana Husay was busy as before but now The Brother Andre Clinic was functioning and the space with the benches where Mass (still with the temporary roof) is celebrated was quickly converted into a wheelchair clinic. A team of volunteer therapists, students, and mechanical handymen came with their tools and two hundred used, refurbished, and new seating systems for children with disabilities. Many of the new wheelchairs were produced as part of a prison ministry program in South Dakota. Four children, with their families, were brought in at a time. The therapists, students, and handymen worked with each of the children to fit them with a specialty wheelchair which met their individual needs. I moved from child to child examining them and making suggestions for the seating systems based on my examinations. Children who had previously spent their lives lying in contorted positions were now sitting comfortably with muscles that could relax. Many began using their hands for the first time and smiled for their parents who responded with a love and excitement that transcends cultures or economics.
Saturday morning Tamara and I went to the University San Marcos in downtown Lima where we had been invited to give lectures on cerebral palsy and seating systems for children with disabilities. By Monday morning, the therapy students and their professors were at our sides at Yancana Husay. It was nothing short of amazing. I had to stop for a moment to take it all in. Here, in the geographic and economic center of poverty in a city of nine million people, helping disabled children with disabilities, were therapists from America working with therapists from Yancana Husay working alongside therapy students from Minneapolis and Lima. It was a profound sight on so many different levels. It spoke of people coming together to meet the needs of others without the barriers that we too often find erected in our paths. Here in a space where Eucharist is celebrated Church simply continued.
Most profound of all, we were all there because of the lives of two children. Two children who were born on different sides of the equator, in different cultures and languages, in distant lands and who never met. Their lives did not even share the same period of time on this earth. Two children who came into the world with different disabilities and did not live to see their adolescence. Their extraordinary influence on the lives of children and families in Canto Grande and across Peru speaks of a very real bond between Baby Aroma and Eleanore. It is a mystical bond that defies secular explanation but is crystal clear through the lens of faith. They are the saints of the third millennium church. Their contemporary martyrdom is a resounding, uncompromising witness to the indispensable value of each human life in God’s plan for His creation. Theirs is The Holy Spirit’s siren call of divine love to a suffering world.
Contemporary society would say that their lives were a waste. Their disabilities and resultant needs made them less of a person. For society, in its wisdom, has a way of denying personhood to those it wishes to ignore or extinguish. Throughout history, and to this day, societies have chosen to deny personhood to individuals on the basis of age, gender, race, religion, disease, or infection. This denial of personhood strikes at the very foundation of human dignity. Without this denial of personhood there can be no condoning or committing atrocities such as slavery, ethnic cleansing, or abortion. But just as society has sought to deny personhood to groups of its members, God has chosen to elevate personhood through the way of the cross. By the cross, God, The Father, allowed the humanity of His son to be lifted in divine sacrifice so that humans may be lifted to divine eternity. And He made no exceptions.
This is not just the story of two children. It is our story, yours and mine. It is the story of every person who has ever been graced with a heartbeat. For no one can voluntarily will their heart to beat even once. Each heart beat is a gift, a concrete sign of grace from an engaged and loving God that He does have a plan and that it includes each of us until the very second of our death. It is a call to invest our heartbeats in the service of our brothers and sisters in need instead of chasing transient petty pleasures. It is a chance to risk encountering our neighbor and thus learn to love ourselves. It is an opportunity to find fulfillment in a way that renews society and elevates culture. For we also are part of the mystic bond that unites Baby Aroma and Eleanore. It is that collective union that The Church proclaims as The Body of Christ. Once lifted on the cross for all humanity in the person of Jesus we now are that body and together by that cross we have found our only hope.
Such is the Wisdom of God.
Joseph Paul Dutkowsky, MD
Excerpted from a manuscript in progress entitled, “Pages from a Surgeon’s Journal”Copywrite 2012, Joseph Paul Dutkowsky, MD