Read an Excerpt
Life with a Superhero
Raising Michael Who Has Down Syndrome
By Kathryn U. Hulings University of North Texas Press
Copyright © 2013 Kathryn U. Hulings
All rights reserved.
ISBN: 978-1-57441-537-7
CHAPTER 1
Unwrapping
Michael came wrapped in layers, too many for a pleasant spring day. Even indoors, a small knitted cap was secured over his ears with yarn tied in a sloppy bow underneath his chin, brushing up against a matching sweater buttoned high on his neck. There was a small bead of sweat on his brow, but he seemed parched; a blister festered on his lower lip and, in the fluorescent lights, his skin was a dusky shade of pale yellow swirled with pasty blue. Where his head had been shaved on the sides to accommodate an IV tube insertion a few days earlier, I could see pea-green veins throb in a nervous, thirsty flow. About half an hour earlier, before I held Michael in my arms, I had met his escort, a close relative of his, who was also blanketed in perspiration from her trek through the labyrinth of Stapleton Airport.
It was not difficult to spot this small, winded woman and the quiet infant she carried on her bosom like a backwards papoose. In addition to the baby, she lugged a large blue duffel bag over her shoulder. Exiting the terminal ramp, she had a lost, searching look, not unlike a child on the first day of kindergarten who, before entering the classroom, peers over her shoulder to make sure Mommy is still there, waving her on, nodding in assurance. I was not sure if this woman, whose voice I'd heard, but whose face I'd never seen, was looking backwards for comfort or forward for closure; either way, I ached for her.
I had not thought to bring a sign to identify ourselves; we were a mob, all fourteen of us (my husband Jim, me, our four children, Jim's parents, my mother, my sister and her son, one social worker, an adoption exchange representative, and a good friend)—an obvious greeting party. We were all waiting with the same searching visage as the woman carrying the package we desired. When my eyes finally met the smooth, black gaze of my child's escort, my entourage faded and found a home in my back pocket, the muffled roar of jets landing and taking off resolved into a whimper, and all the bustling passengers became ants at my feet. We nodded in acknowledgment, an immediate recognition. Only three people remained in the expansive airport: my child, this woman, and I.
This is what the three of us knew: Michael's biological mother did three remarkable things in the first three days of my infant son's life. The first remarkable thing she did, perhaps as she nursed him for the first time, was notice that he looked different from her other two children. He was smaller, the bridge of his nose was flat, his tongue was large and flailing, his head was flattened in the back, and his ears protruded from his head at a ninety-degree angle. She called the doctor's attention to these malformations and demanded an explanation. She got one: her baby had Down syndrome.
The second remarkable thing she did was announce her intention never to see this child again. "Take him away," she screamed. Doctors, social workers, nurses, clergy, and the baby's father all pleaded with her to hold the baby once more, to give her heart a chance, to look into his eyes and find a connection. She refused. She could not bear to raise a child with special needs. The life of stress and suffering she foresaw was unimaginable in her reality.
The third remarkable thing she did was tell a lie of epic proportions. She left the hospital without her child and returned with her husband to her small Israeli town, her neighbors, and her two small children. And then, she told them all that the baby had died.
The adoption caseworker who handled Michael's adoption relayed the remarkable story about Michael's biological mother to me: her initial uneasiness at the appearance of her baby, the ensuing screaming, and the content of her lie. This is what I knew, based on phone conversations with Michael's female relative, the escort who eventually brought Michael to me: the biological father wanted to keep the baby—this relative wanted to keep the baby—but the biological mother was unswayable. For my son's biological mother, he really was dead.
I may have misheard the relative's lamentations over the fabricated loss of my son. I might have selected to hear a truth I could live with. I might have demonized the characters in this story so I could avoid their pain, to keep intact a narrative binary of good deeds and bad deeds, so I didn't have to linger in the abyss of grey—the place where I might have to find a moment of compassionate understanding for any of these people who were bartering the exchange of a human life. I would have to forgive Michael's biological mother for what I cannot comprehend and worship her for bestowing upon me my son for whom I am most thankful. A human heart can break from such aches.
Over time, I have realized that when it comes to memories, there are some we own and some, it seems, we acquire. This experience has been no different. I was not there in the flesh to watch Michael's mother's anguish. I was not with Michael's escort in the living room where bags were packed in preparation to fetch my very alive son and bring him to Denver. I was not privy to the hours I imagine Michael's biological father must have spent on his knees begging his wife to reconsider her choice. I did not hear the prayers from rabbis and family members for healing and reconciliation at her bedside. But I have imagined these scenes a million times over in my head, so many times, in fact, that I sometimes forget that I wasn't there. I find that I need to insert myself into the part of the story where I have no physical presence. I gather my emotions and let them overlay the bits and pieces of information I have received—like shellac daubed over a puzzle of one million pieces—in an effort to keep the shape from dispersing. Still, however, there remain tiny, almost imperceptible cracks in the facade of the whole. This potential for leakage, for the slippage of so many truths about Michael's beginnings, does not escape me.
The most compelling slippage, the possible truth I find most disturbing, is the moment Michael's mother forsook him, allowed him to be taken away to an unnamed kibbutz. How curious, how easy, how arrogant it is for me to use the word "forsook." It is my inchoate definition, how I define the moment she irretrievably let go of Michael, though she may, in truth, define it quite differently. Still, I have imagined through many a sleepless night under what circumstances could I have been moved to reject any of my children and agree to their being sent away to be nursed and rocked and soothed with lullabies by a communal group of strangers. My own dire poverty? My own complete and utter isolation from the world? My own instability? A drug habit? All are possibilities. In truth, I have no idea what happened to Michael's biological family, and I have no right to judge.
Even so, I sometimes feel confused when I close my eyes and see her giving Michael away to the unknown; I return to this dark place of palpitations and stomach churning, which is quickly followed by another wave of gratitude and thanks for making it possible for me to have Michael in my life. In these hazy moments, standing on the precipice of questioning interspersed with thunderous spasms of ecstatic gratitude, I am not sure where my humanity, or even my own sanity lies. Michael's story is marked by a lie, yet it is not defined by one. Instead, his story is shaped by the truths that come out of a faith in and love of life.
This is what I know alone to be true: I love Michael. He has changed me. I could have never predicted how he would make me analyze life with a mischievous, chuckling eye instead of a sad and heavy heart; or how he would make me laugh harder than I've ever laughed before; or how I would feel moments of terror I did not know existed; or, finally, how by loving me for the complete and total dork I am, he would allow me, for the first time in my life, to see myself as whole, as someone who mattered.
I did not know that soon after Michael arrived I would become deathly ill. And had Jim not repeatedly brought Michael and my other four kids to the hospital day after day and put them in my arms and on my bed, even though I was not lucid, I am not sure I would be alive today. Michael came to us on the wings of a 747 propelled by his biological mother's lie. But the remarkable fact is that sometimes a lie ends up being the beginning of beautiful truths. It is true that we offered Michael a forever family and an endless celebration of his life. It is even more true that Michael has given us more reasons to cherish life than we could have ever imagined.
* * *
I know of no etiquette book that outlines the proper way to proceed with the ritual of the giving away and receiving of a child given these circumstances. There are no books with indexes and chapters suggesting how to graciously accept the gift of a human being or how to phrase a thank-you note after the fact. Celebrities have written books describing it as a blessed event, psychologists have written tomes on the statistical outcomes of adoption, and social workers and lawyers provide legal guidelines and processes. Yet, the actual moment of transfer is unknown, unpredictable territory, especially in our circumstance.
Due to the widely varying beliefs of the people involved in the adoption, there was a great deal of cautious cooperation and moral compromise. Michael was born in Israel. I live in Colorado. Jim and I are an American, interfaith couple (Jewish and Irish Catholic); my child's biological parents are Orthodox Jews. The adoption exchange was a Jewish organization specializing in recruiting families for waiting Jewish children with special needs. It was actually run by a long-lost cousin I never knew before. The adoption agency in charge of the legal mechanics of the placement and the home study was an Evangelical Christian organization that, as a rule, placed children only in Christian homes with parents who signed oaths to raise the child to be a practicing, devout Christian. The two disparate entities' only connection was that they shared a social worker: my child's case manager. The Christian Agency grappled with our lack of Christian status; the Jewish exchange and biological family wrestled with our interfaith commitment. Jim and I were left squirming in between, trying to quickly convince all of them that regardless of the name of our G-d, whether we kneeled in prayer or swayed and davened, whether we thought Jesus was a nice Jewish boy from Bethlehem or the Light of the World, we were good people—flawed, but good.
Often times in adoption, there are long stretches of waiting time for an available child. I have read anecdotal accounts in women's magazines sharing how there is not a glut of healthy white infants who have been relinquished, but there is a high demand, plus mile-long waiting lists to adopt such children. The business of adoption is not an inexpensive one, especially for people who wish to adopt children who come with few obvious, immediate complications and are willing to pay high, five-figure sums to extend their family. There are, however, relinquished, waiting children in the world who have special needs and who often wait in vain for a family. These adoptions can move forward much more quickly, and while it is true that they too include expenses that need to be considered, the costs are usually considerably fewer. Often, these waiting children might be passed from foster home to foster home, and institution to institution, until they either become wards of the state or reach the age of eighteen and are released to find their own solitary way.
I had been waiting my whole life for Michael. As a five-year-old I read Dale Evans' book, Angel Unaware, which tells of Evans' daughter who had Down syndrome and died at a very young age. I told my mom I too would have an angel for a child, but my angel wouldn't die. My mom cried. Later, as a teen, I became perpetually sad and sullen as a result of watching bullies in junior high hallways torment and torture special education students who were cloistered in faraway rooms, let out only for P.E. and lunch. It seemed to me at the time that adults remained mute. It made me wonder who, if anyone, mattered.
In high school, I was often sent to the principal's office for skipping classes. I smacked my gum, blowing bubbles while he lectured, not knowing how to explain that I couldn't handle the pain I saw and felt, but could not fix. He'd always bid me goodbye with the words, "I hope I won't have to see you in my office anymore," but I knew he would. I was a truant child. I felt disembodied and helpless. I was young and powerless and was quite sure I did not matter and could not make a difference in anyone's life. I was not whole.
Twenty years later, I received a survey to fill out for an upcoming high school reunion. One of the questions asked: "What is your most embarrassing memory of high school?" I answered something about falling off my bike when I was a sophomore cheerleader riding in a homecoming parade. It was a lie. Every moment in high school was embarrassing. There is no other reasonable emotion to describe how I felt anytime I was silent in the face of brutality toward anyone marked by difference, or when, G-d forgive me, I enacted malice myself. A saint, I am not. Still, in that time, in my youth and in my heart, I promised G-d that when I grew up, then I would be truly good: do good things, say good things, and not be mute in the face of cruelty.
Between high school and my first child, I sought out goodness. I started studying dance at the University of Utah, but quickly transferred to the University of Colorado in Boulder where I studied Therapeutic Recreation and Adapted Physical Education. This field was a miraculous discovery for me—I found a way to help people re-create their lives and find wholeness through play! I taught creative movement and dramatics at a residential facility for adults with developmental disabilities. I went on hiking trips with clients, and I led a life-skills class where we went grocery shopping and cooked spaghetti.
Goodness came to me by the way of children when I myself was just emerging from my own adolescence: my first biological child was born two weeks after I turned twenty-one. Over the next six years, I carried and birthed three more children. At the age of twenty-seven, I was the mother of four, but I knew my family was not complete. I had been dreaming about adoption since childhood. Jim and I, a couple since our very early teens, had agreed long ago that one day we would adopt someone who needed us. This agreement was sort of a deal-breaker in our relationship. It was imperative in my life, and Jim understood that. In February of 1991, the child in need presented himself in the form of a phone call; the telephone would serve as a third party throughout the entire process, a sort of co-conspirator of chance, fate, and timing.
I put out the word to a couple of friends (one of whom happened to be an adoption counselor), that Jim and I were ready to begin what we thought would be an extended, painstaking process. Even in the schema of adopting a child with special needs, however, the process that was about to unfold was unusually rapid. Within days, my counselor friend called me to let me know that she'd received news from a Colorado social worker about a little boy, only three days old, born prematurely in Israel who had Down syndrome. He had been relinquished and was being cared for on a kibbutz; his parents wanted him placed with a Jewish family in the United States. She told us that if we were interested, we needed to make a call, and left me with the name and number of a social worker. I called that evening.
Timing is a funny thing. Just seconds before my call was placed, the social worker had been on the line trying to reach a unique family in the Northwest. They were a well-known family in adoption circles; it's hard to go unnoticed when you have over thirty children under your care, many of them under the age of three, with Down syndrome. My child's biological kin in Israel had heard of these folks and felt they would be a good match for the baby they could not keep. Thank G-d, a busy AT&T system, and whatever other forces were at work that evening, that the extension at that household was busy. Perhaps it was because the adults at that home were trying to reach a crisis hotline—within a month of that night, one of the adults had a complete and utter nervous breakdown. All the children were removed from the home and successfully placed elsewhere, except for the babies with Down syndrome—they were separated and ended up in the care of the state. My child was a busy signal away from being one of those kids. Instead, after a rushed home-study and swift preparations (talking to doctors, setting up his room, buying new clothes), my child arrived in Colorado six weeks later, in the spring of 1991, after only a short delay advised by doctors in Israel who were scared to let him travel until he recovered from a nasty, potentially fatal case of Respiratory Syncytial Virus (RSV).
Our child's escort volunteered to make the journey across the Atlantic Ocean to say goodbye to him between the airport escalators, harried travelers, and drinking fountains. After the awkward, tearful exchange, where her hands slid the weight of the infant to the crook of my elbow, we sat for a few minutes on sticky terminal furniture. She gave me a Star of David to give my son on his Bar Mitzvah, a miniature red Torah to put under his pillow to keep him safe, a blue duffel bag full of what she called "his things," and instructions on how to administer myriad medications I'd never used before to treat this still-ailing baby I held. I promised to love him, to write, to send pictures, and never to forget what she had done for my family. She gave my child one last kiss and then, with our social worker holding her steady, they disappeared around a corner to get some coffee, a tissue to wipe her face, and some cold water to keep her from collapsing.
(Continues...)
Excerpted from Life with a Superhero by Kathryn U. Hulings. Copyright © 2013 Kathryn U. Hulings. Excerpted by permission of University of North Texas Press.
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