Pam’s Papers – Dakota Experience, Sioux Falls 2010

The Dakota Experience

We all know the Holland metaphor for our unexpected journey with our child. A flight to Italy lands us in Holland. It illustrates that parents with children with disabilities arrive in an unexpected environment and learn to adjust and come to see what is positive about the new destination. From those first minutes or hours with a dying child, to our early days keeping vigil in a NICU, to whatever weeks, months or years were allotted us to be with our child, we realize we did not land where we intended. Somehow, initial disappointment gives way to appreciation, wonder and a sense that each of us is where we were meant to be.

In preparation for our vacation in South Dakota, the location of the 2010 SOFT conference, I read a book about the Dakotas that I happened upon at a used book sale. SOFT members have learned there are no coincidences, just gentle nudgings toward what we need to have happen, what we need to know and who needs to enter our lives. I read the book and realized that with disabilities in children covering a wide range of challenges, that maybe, just maybe, we SOFT parents had come not to Holland, after all, but to the remote central region of the Dakotas, where formidable challenges give way to the precious, the beautiful and the spiritual. As has happened so many times before, something that has nothing to do with me and my journey with my child or with the friends my child has brought into my life, with some reflection I realize that it has everything to do with the life my child has brought me. Decades after his birth and death, through metaphor, the experiences of others and the ideas that grow from their encounters, I continue to learn about my relationship with my son and why his short life matters still.

In a side trip before the conference two SOFT families drove across South Dakota to explore the region together. We also realized the universality of our stories across miles, years and cultures. What follows is a review of a spiritual book which seems to reflect our own journey with our children and an encounter with the distant past in a remote place that mirrors the present of many of us.

 Welcome to Dakota

 My first encounter with South Dakota was as a fourteen year old required to read  Rolvaag’s Giants in the Earth, an epic novel of the immigrant experience first published in the 1920s. The length of the book, the number of tragedies that befall the Norwegian pioneers trying to tame a harsh land, the madness that destroys those who do not adapt, and the final scene of a thawing corpse facing the setting sun were just too much. At fourteen it is difficult to do bleak. I wrote a satire, which was returned with instructions to write an appropriate paper. I had not grasped the poignancy. Ironically, fifty years later I remember the book well if not fondly. My next encounter was twenty-five years ago when a young Jesuit who was a deacon, then briefly a priest in our church, despite singing “Come back to Jamaica” to those making his first assignment, found himself in Pine Ridge for a few years. He reported that he had learned surprisingly to love the cold, because only then could he walk to his house without beating back rattlesnakes. There were giants in the earth in those days. too.

This spring at our library’s used book sale, I spotted a volume published nearly two decades ago, Dakota, A Spiritual Geography by Kathleen Norris, Houghton Mifflin, 1993, Mariner Books, 2001. If Giants in the Earth convinced me to stay well south of the Dakotas, this book drew me to a land of great contradictions and tensions that challenged both the pioneers and their descendants but promised awe, growth and encounters with the sacred. It is a lyrical book by a poet who returns to the familial place of her childhood summers. Her grandparents die leaving the house they built in the 1920s and their cattle farm, and she and her poet husband leave New York City for a several year hiatus that lasts decades. She is captured and humbled by the vast and austere geography, where from slight ridges the towns fifty miles away can be seen. She explores her inner geography revealed in a place away from what had been her adult life. Compare her realizations, growth and connections to your life with your child: the challenges, the beauty, the requirements, the miracles. Consider that you may not have found yourself in Holland after all. You may actually be in Dakota.

In Dakota she marvels at the sunsets, wildlife, Milky Way and silence. She discovers detail in a place that at first seems void of detail. She writes of a land that grudgingly bears crops by farmers toiling in the soil of shale and limestone of an ancient seabed, farmers who know devastation can come with a turn of the weather. It is a place of limited rain and few trees. It is a place where one can look into the center of the galaxy through air so clear that invisible stars become visible. Vastness is at one’s feet and above one’s head, and both touch the soul.

The High Plains is a land of scorching heat, drought, hail and blizzards. It is also a land of double rainbows that follow storms of sharp wind and sheeting rain. What Thoreau described as our “need to witness our limits transgressed” is brought home in every season in the High Plains at the edge of the desert West. Norris calls western Dakota “my spiritual geography, the place where I’ve wrestled my story out of the circumstances of landscape and inheritance” (p. 2).  The emptiness found in the High Plains is bountiful, challenging and a catalyst for growth for those who embrace the land and its people. The silence that permeates the vastness promises transformation.

Norris writes of western South and North Dakota that SOFT members drove through or to at conference time, not eastern South Dakota where we gathered. She explains the distinction between the east, which geographically and economically is similar to Minnesota and Iowa, and the High Plains west of the Missouri River, which is arid land that extends through Wyoming and Montana. It is ancient seabed, now half a continent away from the sea in every direction, still reminiscent of the sea in undulating fields of grass and wheat, rolling terrain, isolation, wind and an endless horizon. In the eastern part of the state there are tall trees, bountiful farms, cities, industry, and commerce. In her part of South Dakota there are counties larger than Massachusetts with no towns of more than 2,000, most under one hundred. More than ten counties have fewer than two people per square mile with populations eroding. The hardy citizens of western Dakota have survived financial and climatic disaster, and although many have shuttered their farmhouses and left, others give the challenge another year.

Norris tells stories of those who have died, of her young students in her writing classes, and of adults she meets. Scattered throughout the book are the words of children, including one, who holds her words in her head until she obtains paper at school. The poignancy I missed as a child in reading Rolvaag touches me as an adult in the wisdom of Dakota’s children describing their sense of place. She relates that one child sensed “a terrifying but beautiful landscape in which we are at the mercy of the unexpected, and even angels proceed at their own risk” (12).  She writes of the importance of stories to define us, connect us and allow a culture to survive. She eventually joins her grandmother’s church, cook’s her grandmother’s recipes in the kitchen where they had been made, and learning who she is from her lineage, she tells her story. She goes on retreat at various Benedictine monasteries dotting the High Plains, hears more stories and begins to define her spiritual self. She finds a solace that parallels what she feels in the vastness of the prairie. All the stories she hears foster her spiritual growth.

Norris learns to observe differently, more attentively. The details: an owl, a wild flower, a rivulet after a drought, the first green of spring, dust devils, and grasshoppers enchant in a seemingly empty tapestry. Norris describes the High Plains as essential to her growth as a poet and a person. In both the desert of the High Plains and the monastery she finds that with minimal distractions one turns within to personal resources in a context of always waiting, whether a monk for liturgy or a farmer for rain or harvest. At the monastery and the ranch there is deprivation, which makes seemingly minor occurrences or changes treasures and sometimes miracles.

Norris finds her new geography austere and apart. She describes her living quarters as she travels to outposts for stints of several weeks in rural schoolhouses and concludes that the forced asceticism is in fact, “a way of surrendering to reduced circumstances in a manner that enhances the whole person” (23). In Dakota with dramatic weather and few material resources it is essential to be disciplined and to know exactly what is happening, because not knowing can be lethal. She describes her homeland as a place that provides little market, so what is seen in media is not available locally. Transportation services are minimal and require journeys of hundreds of miles to access them. She concludes that those in western Dakota are “invisible’ to those in the eastern part of the state and beyond. She recognizes the importance of lives that to many are overlooked and to her are undervalued.

I received a phone call from a man whose wife’s recent prenatal testing had suggested the presence of a trisomy. Further testing was recommended. He went on-line to learn what he could about trisomy 18 and trisomy 13 and decided his wife was upset enough without seeing what he had just read. He wanted to know more, but he also wanted someone to tell him the situation was not as dire as he had just learned. He said, “I’ve never heard of this!” as if that could protect him from his world falling apart. I told him everything positive I knew, while also reminding him that he was facing the probability of a grim diagnosis. I assured him what now seems impossible becomes routine, that he will love his child and that resources will emerge. His child may beat the survival statistics and develop slowly, know them, give and need affection. I told him children with trisomy are adorable, fun, cuddly. I assured him that they do develop, despite what the experts say. They are lovable and loved. Their families are also blessed.

Part way through reading Dakota, the next day, I had an epiphany. We did not disembark in Holland. We all landed in central and western Dakota. At first our landscape was bleak, desolate, without hope. We were isolated. We had few landmarks by which to get our bearings. We waited for the positive word, the offer of medical intervention, the understanding that our child was valued, some inkling of hope. We felt invisible. We were apart from services, philosophically if not geographically. We learned to turn within, rely on inner resources and those people we found supportive in this new geography. We held our child and touched the sacred. We had to be aware, disciplined, attentive, capable of reading the smallest sign of danger and reacting quickly. Medial challenges were common and could be deadly. We focused on the details revealed to us and in time we celebrated small changes. If we were lucky we found people to share our journey, love our child and celebrate with us.

Parents with a child with trisomy adjust to uncertainty and demands. We learn routines, that, although difficult at first, assure survival, and we complete tasks others imagine are daunting. We react quickly to abrupt weather changes in our child’s health. We are enriched by small changes in alertness, in available resources, in sleep, and in unexpected developmental growth. In our isolation we grow, find the sacred in everyday occurrences and like Norris are “re-formed”. The Dakota farmers eking out a precarious living survive with a mentality of “next year” when things will be better, or they will pack up and find a more hospitable environment. Still, they stay, believe in change, hold hope, value community and believe that where they are has its own beauty. They know the empty land is full. We, too, learn what others see as empty is full.

We too stay, another year, another decade. We stay in SOFT and tell and read the stories. We find our way to the conference, despite financial and logistical hardships. In good company, we take a breath, hold up an arm and release our child’s memorial balloon once again. We realize that we too are in “a terrifying but beautiful landscape in which we are at the mercy of the unexpected, and even angels proceed at their own risk.” Like the Benedictine monks of the High Plains of Dakota and the farmers who hold the family farms of their great-grandparents, we create community that protects, enriches and celebrates. We, too, learn to pay attention. We are humbled. We tell our stories, holding them in our heads until we have not paper, but time, perspective, the right words and a receptive audience. Our stories create a quilt of hope for other parents. Our culture of hope, love and acceptance is kept alive in our stories and belies a growing medical culture that sees our children and our lives differently.

In Dakota Norris learns “to trust the processes that take time, to value change that is not sudden or ill-considered but grows out of the ground of experience” (145). She describes such change as conversion, a change of not who she is but of her perspective, an inward change of the heart, a willingness to grow in a life others cannot imagine. She learns to recognize the gifts of the desert. She thinks it is important in conversion that there be “no easy entry” to the new life and that there be a conscious decision to embrace such privation. Like Norris who revels in the stark, misunderstood and sometimes isolating life she has, and finds herself “in a current carrying me farther than I had intended to go,” SOFT parents who had “no easy entry,” make conscious decisions, trust the process, and are changed in the current of genetic anomaly. Parents of children with trisomies and similar genetic diagnoses also experience conversion.

Norris reflecting on those who have lived out their lives in a bleak country thinks of a vesper text from I John: “Beloved, we are God’s children now; what we will be has not yet been revealed.” She thinks of people who would not live anyplace else. I think of parents who soon realize that their imperfect child is perfect, that she is unexpectedly what they need, that he brings gifts beyond their expectations. They also find resiliency within themselves to meet unique, sometimes terrifying and constant demands. What the child and parents will be “has no yet been revealed.”

Norris writes, “It’s a dangerous place, this vast ocean of prairie. Something happens to us here” (153). We SOFT parents have each landed in Dakota with our previously unknown diagnosis and something happens to us here, too. Norris writes in her chapter about Hope Church, an isolated building with a vibrant congregation of twenty-five people who reach out to the world, “But these places demand that you give up any notion of dominance or control. In these places you wait, and the places mold you.” (170). Being few and foregoing control do not preclude strength or influence. Being isolated does not preclude hope. Families wait and their experiences with a special child mold them. There may be lack of control, plenty of uncertainty, and daunting tasks, but there is strength.

Welcome to Dakota and all that Norris describes in her spiritual journey. Welcome to Hope. Welcome to Norris’ dark side of the moon that no one sees but offers invaluable perspective. Welcome to a vast sky with clouds that are angels’ wings. Welcome to a place where undervalued lives matter. Welcome to Dakota! There are windmills, but there are harebell and prairie rose not tulips. There are no dikes to hold back the sea, just a dry place in need of nurturing water. Welcome to Dakota, in Norris’ revealing and poignant book, a treasure in its own right and a metaphor for your life with your child. Welcome to Dakota in the details of your life and the essence of your family’s life with your child. Whether you have your child in your arms, at your side or in your heart’s memory, you remain in Dakota for you have redefined beauty and what is important, learned what is presented as less can be more, acknowledged miracles, found the sacred. You have allowed yourself to be forever changed.

 Shared Dreams, Shared Sorrows

Despite adolescent protests about the length and wisdom of the road trip, with seven people in two cars the Herdman’s and the Healey’s drove from Rapid City to Pine Ridge Indian Reservation in southwest South Dakota. This was the adults’s field trip to to see the juried art show at the Red Cloud Indian School, the Wounded Knee Massacre site, the outlying lands and the Native People who were forced onto reservations with early promises quickly broken. We went because we knew it was an important destination for us, and we hoped important for our children to see a part of this country that carries our shame and great sadness but also a rich heritage. We knew that politically invisible people need to be visible to us. Our children need to know there is a place where more than half the children live below the poverty line in harsh, uncompromising conditions. The Black Hills reservation, larger than Rhode Island and Delaware combined, larger than Connecticut, is comprised of two of the poorest counties in the country and parts of two others in two states. The reservation was established in 1889, the same year the Dakotas simultaneously entered the union. The Jesuit school opened its doors the same year. The Wounded Knee Massacre occurred the following winter. The Pine Ridge Reservation is a large, isolated tract of national historical, social and ethical importance, where the proud people of the First Nation now struggle to survive.

Just beyond the original brick school building is a cemetery where Chief Red Cloud was buried in 1909. The Oglala Sioux Chief fought to close the Bozeman Trail and preserve buffalo hunting grounds. He endeavored later to create Sioux reservations for his people to live in peace. He worked to establish the school to educate his young. The warrior chief was 87 years old at the time of his death. The dirt path near the school winds up a hill through a simple metal gate to a small, wind swept cemetery, still in use. Tall prairie grass blows against many graves, and wild flowers have sprung up near the gravel path. On the day of our visit, above the granite markers was a blue sky, large cumulus clouds and a remarkable view across tree dotted rolling hills.

Not far from the chief’s final resting place was an elaborate headstone for an infant. Joseph Jones, the son of Charles and Lizzie, had died seven months before the chief’s death. He had lived only 44 days. The third tier of his gravestone shows an infant peacefully sleeping on a blanket in what looks like a giant clam shell. His thirty-five year old mother had carried him through the harsh Dakota winter and given birth in April, and six weeks later, despite the promise of spring, he had died. They might have been missionaries who left the familiar coast more than a decade earlier to travel to what must have been an alien land and work at the school.  Joseph might have had a genetic syndrome that curtailed his life or an ordinary illness that could not be cured at that time or in that place. The grief of his parents is apparent in their elaborate memorial. It was a tangible symbol of the universality and timelessness of such grief.

Willa Cather writing of her native Nebraska, a state which includes part of Pine Ridge, said,  “There are only two or three human stories, and they go on repeating themselves as fiercely as if they had never happened before.” As I stood by a memorial more than a century old, I knew her words rang true. Joseph had been born seventy-seven years earlier than my own son, both early April babies who did not survive infancy. In a few days we would be in the company of parents who had also had their children too short a time, made their own memorials and carried the same sorrow with them for months, then years, finding themselves in grief to be in their own alien land. Joseph’s parents, long dead, were linked to us. Their memorial spoke to us. Our grief was shared.

At Pine Ridge today, infant mortality is five time the national average, and children who survive to adolescence in a homeland with little opportunity or hope are at risk for suicide which is four times the national average. Nearly a third of teens attempt suicide. With unemployment about 80% and close to half of the 30,000 residents living below the federal poverty line, Pine Ridge Reservation remains an area of sadness and want, despite the rich Lakota culture and pride in their heritage. Too many parents share the experience of outliving their children. This must be addressed by support by those living outside the reservation. Cather wrote, “Where there is great love there are always wishes.” We share with all parents who are bereaved, those early wishes for another outcome and more time, then, greater understanding and acceptance of their devastating loss, and, finally, both a different hope and abiding peace in the quiet hours and the sacred places.

Pam Healey,  mom to Conor, T-18