Read an Excerpt
When Rain Hurts
An Adoptive Mother's Journey with Fetal Alcohol Syndrome
By Mary Evelyn Greene Red Hen Press
Copyright © 2013 Mary Evelyn Greene
All rights reserved.
ISBN: 978-1-59709-262-3
CHAPTER 1
The Philtrum
After Russia, I can't help but stare at philtrums. I think I'm doomed to obsess over this obscure but vital piece of human anatomy the rest of my life. I see beauty in philtrums, and on occasion I detect heartache. The philtrum is the vertical groove between the upper lip and nose. In the womb, a baby's normally growing brain differentiates into the left and right frontal lobes. Near the end of this process, if all goes according to plan, two folds of flesh grow around the skull and meet in the front of what becomes the baby's face. The philtrum is essentially a seam, the place where the halves of the face fuse. It's a mark of symmetry, a talisman of sorts. A well-formed philtrum is proof of our grand anatomical design and the centerpiece of a well-formed face. A poorly formed philtrum predicts abnormal brain development.
I have an ordinary, unexciting philtrum. My husband Pat's is a little nicer. Our daughter, Sophie, has a deep and luminous groove, beautiful and rich in its perfection. I smile with relief when I think of it. Peter, whom I've grown to love with a once inconceivable intensity, doesn't have one at all. He will always be the half boy underwater, swimming, always swimming toward something, not sure of where he's going because the weight of the water disorients him. His own air bubbles conspire to distort his vision and prickle his hyper-alert skin. Lost but plucky in the vast expanse of a backyard pool. He is not whole and never will be. The groove between his upper lip and nose is silky smooth.
Well before science was able to explain the developmental significance of the philtrum, the ancients recognized its importance. The word philtrum comes from the Greek philtron, from philein, meaning "to love," "to kiss." According to the Jewish Talmud, God sends an angel to each womb and teaches the unborn baby all the wisdom of the world. Just before the baby is born, the angel touches it between the upper lip and the nose and all that has been taught is forgotten. Other folklores claim that the philtrum is the spot where the angel put his finger to "shush" the baby in the womb from talking about heaven, or from telling another secret. Still other stories say the philtrum is an indent left by the finger of God Himself.
I won't accept the cruelty of a god who would overlook my son, and so I have formed my own view. To me, the philtrum is a marker of hope. Not a guarantee of health or happiness or even normalcy, whatever that means, but a reason for optimism. Without a philtrum, there is no such thing as a healthy start. And a head start? That's out of the question.
I haven't always been consumed with talk of philtrums. The seed of my obsession sprouted in late winter 2004 and fully blossomed two years later. Before then, I can't honestly say I'd heard the term, and I was only vaguely aware of its presence on the human face—mine or anyone else's.
Sometime in the weeks before the tulips bloomed in Manhattan, and when we still lived in the city, Pat and I signed up for an information meeting being held by a local adoption agency, Happy Families, at a Jewish community center. We had long ago agreed we wanted to adopt a child, even if we successfully conceived, a possibility that was growing more remote with each passing month. And so our odyssey began that night, the first of many stumbles along the way toward adoptive parenting. The date on the advertisement was wrong, though we didn't know it at the time, and we were a little late. We slipped into the room and sat down at a long table with several other couples and a few singles. A woman with untamable gray hair, a compelling voice, and fiercely intelligent eyes was asking folks to say a little about themselves. Pat and I were nervous. We felt certain we had blundered our way into a Jewish studies seminar and our non-Jewish status was about to be found out. Worse still, maybe we had unwittingly joined a sex therapy group and were about to be asked to share intimate details about our marriage. We needed to leave, and quickly.
But the woman with the wild hair asked what we hoped to get out of the "class" just as we were making our escape. I blathered something incomprehensible about a Happy Families mix-up and scurried to the door like a panicked squirrel, Pat and satchel in tow. She laughed and asked us to stay. It turns out we had walked into an international pre-adoption parenting course being hosted by Kathy Brodsky and Dr. Jane Aronson on behalf of the Jewish Child Care Association of New York. Dr. Aronson, we soon discovered, is a world-renowned adoption pediatrician, top in her field and an adoptive mother herself. We learned so much that night we decided to sign up for the rest of the course. Of the thousands of adoption-related mistakes made by us, this was by far the most providential. We never did catch up with Happy Families.
In many ways, our entire story relates back to meeting Dr. Aronson that night. She is the person who explained the importance of the philtrum to me and everyone else in the room. I remember Pat and several other men nodding in agreement when she described it as the mustache area that men hate to shave. I looked around and realized, whether consciously or not, that every single person in attendance was locating and exploring his or her own ribbon of flesh between the upper lip and nose. I was doing it too. How odd we must have looked in the presence of each other, outlining the peaks and valley of our grooves with the pads of our fingers. I remember trying to catch a glimpse of Dr. Aronson's, as though the shape of her philtrum might reveal the mystery of the person inside.
As I learned about the philtrum, I struggled to process why this information, so seemingly obscure at the time, was so important for Pat and me to understand, and what it meant for our future child. After that night I knew I needed to make sure our own adopted children had one, that part was clear. Prospective children without philtrums are considered "high risk," an ambiguous term with clear implications, even to a novice like me. The risk of children born with missing or "indistinct" philtrums is greatest, we were told, in Eastern European countries. And why are philtrums so important? In the international adoption world, the presence or absence of them is a litmus test for four words I never before had heard, much less uttered: Fetal Alcohol Spectrum Disorder.
* * *
August 18, 2007. Peter and I are going into the city today, just the two of us. We're taking the train into Manhattan and then spending the afternoon at the American Museum of Natural History. Afterward, we'll spend the night at a hotel. Pat and Sophie are headed to the Crayola Factory for an adventure of their own. Peter requested a trip alone with me a while back and I've been eager to oblige. I hear him wake early, but he doesn't come into our room, which I know from past experience means he took off his Pull-Up and peed on the bed. Sure enough, I smell urine as I turn the corner. What I don't anticipate is the blood. I find him shaking like a leaf, naked from the waist down, holding his soiled pajama bottoms and Pull-Up. Blood is smeared on his face and hands and all over his bed and walls. He has gouged his right nostril to make himself bleed, a shocking new trick he's been perfecting over the last several months. Did he do it because he purposely wet the bed and was nervous I'd cancel the trip? Or did he wet and gouge just so I would cancel the trip? As crazy as it sounds, maybe he is happy about the trip and this was his way of showing enthusiasm. Or more likely still, maybe the trip represents a chance for real intimacy, one on one, and this is more than his damaged soul can handle. One thing is certain, though: Peter is a skilled saboteur.
I go about the business of cleaning up what looks like a crime scene and struggle not to look thrown. Our realtor is hosting an open house tomorrow while we're away and a generous amount of blood mingled with the smell of stale urine is bound to affect the ambiance. In a few weeks, Peter and Sophie will start school in Red Hook, across the river from where we now live. The 1733 Dutch Colonial stone house Pat and I fell in love with before the adoptions, the house we promised the kids was their "forever home," is now for sale. We're entering the last stages of building a new house, complete with geothermal heating and cooling. We want to plunge ahead with a clear carbon conscience. The decision to move, however, was driven not by ecological consideration but rather by Peter's educational and therapeutic needs. We fought his school last year to the point of emotional and financial folly; we should have taken our lawyer's advice and moved thousands of dollars earlier. There's always so much at stake, it seems, our children's welfare topping the list. Peter and I need this trip together, and we need it to go well. This is what I tell myself to stay calm. I leave the house ninety minutes later, yelling over my shoulder for Pat to make sure his cell phone is charged and turned on at all times. I kiss Sophie goodbye and wish I were taking her and leaving Peter with Pat. Maybe Peter knows this. Maybe it's the real reason he gouges his nose.
CHAPTER 2
What a Missing Philtrum Looks Like
Peter came to us in the form of three grainy digital photos e-mailed from our adoption agency, which in turn received them via e-mail from the orphanage in Russia. Seeing the initial photos of your future child is the adoptive mother's equivalent of looking at a sonogram for the first time. In those blurry images, with heart pumping faster than a pubescent salsa drummer, I saw an Olympic gymnast, a Nobel Prize-winning scientist, a poet laureate, or even the next Baryshnikov. Best of all, I saw my son.
Those were my giddy dreams, certainly. The kind of dreams that make your heart flutter with excitement and provide the adrenaline necessary to keep you painting the nursery (or in our case, bedroom) even though you're so tired your arms wobble like spaghetti noodles. My real dreams for Peter, however, were what nourished hope and provided the sustenance necessary to survive the adoption waiting game. I wanted him to be happy, healthy, secure in our family, and grounded and well-practiced in the values that would prepare him for adult responsibilities and a fulfilling life. He would be our Peter the Great, not because of his remarkable public accomplishments, but because he would overcome his difficult beginnings and grow up happy and well-adjusted, through the boundless—dare I say heroic—love, patience, and example provided by us, his parents.
When I look back at those photos, it's easy to remember why I first fell in love with the idea of Peter, and why I've worked so hard to fall and stay in love with the reality of him, our troubled little boy who came wrapped in a package so fuzzy and devoid of information that we were able, and eager, to see perfection. What was clear was that Pat and I thought the boy in those photos was one of the most beautiful children we'd ever seen. And in fact, he is an astonishingly handsome child, with twinkling eyes and an infectious, impish grin. He's blessed with big, almond-shaped, brown eyes and eyelashes long enough to harvest and sell in designer salons. At the time, I reveled in the perfect chubbiness of his cheeks, rosy and red the way nature intended. Peter smiled so happily in the pictures that I never gave the shape or quality of his philtrum (which his infectious smile camouflaged) much worry. His face didn't resemble any of the faces of the countless alcohol-affected children I had seen on websites or in books.
Although Peter would turn out to have certain classic features of Fetal Alcohol Syndrome, like an indistinct, flat philtrum and thin upper lip, he lacks the small eyes, funny ears, or dull expression that are equally as characteristic of the prototypical FAS face. At the time, I didn't realize there was little correlation between facial features and the severity of damage caused by prenatal alcohol consumption. Depending on what stage of pregnancy a birth mother ingests alcohol, her child may be severely impacted but show few if any dysmorphic features or growth deficiencies.
The most important thing I saw in Peter's face was a potential son for us and an older brother for our soon-to-be-adopted daughter, Sophie. I saw in Peter the little boy we would soon be cheering as he turned the corner on third base or kicked his first soccer goal. I saw a budding artist whose drawings would be proudly displayed throughout our home. And most of all, I saw in his beautiful face, which was framed in sparse, lusterless hair, a three-year-old child who needed and deserved to be showered with every ounce of maternal love I'd been accumulating for this long-awaited, precious moment.
So what does a child without a philtrum look like? He looks like Peter. A boy so seemingly divine he made my heart flutter and my imagination take flight. The story of our family necessarily includes an examination of the difficult reasons and way in which Peter eventually came to us. How on the heels of a truly remarkable failure of the international adoption system, and the profound grief and disappointment we endured because of it, Pat and I were given this moment of perfect possibility. Our journey toward parenthood, and Peter, was fraught with many twists and turns, highs and lows, and numerous surprises. In order to understand the final composition of our family, and the full circle of hope diminished, restored, and then redefined that Peter's adoption represents, I first need to tell the story of the series of babies that slipped through our hands and hearts before him. Especially Ben, who for Pat and me has become a sort of ghost child.
There's no doubt our experience with the baby we called Ben influenced our decision to adopt our son, as well as the eclectic range of emotions I harbored when we first met him. My journey with Peter will never be summed up in a Hallmark card; in fact, he and I have had very few greeting-card moments. I have scratched, snarled, and clawed my way toward loving my son, so our beautiful moments together feel nearly transcendent. Someday I may be able to receive a hug from Peter without remembering how far we've come, but for now I remember. For now, an easy, casual hug still feels like a remarkable achievement compared with the complex and immutable emotions Peter demonstrated in the orphanage and during our first eighteen months home. The child we were about to adopt ran to Pat and jumped in his arms, but he screamed with sickening alarm if I took even a single step toward him. He covered his ears and yelped angrily when I tried speaking, even in soft, hushed tones. I had no choice but to back away and watch like a polite outsider as he circled around my husband, movements stiff and robotic, rhythmically repeating his name as he marched to the inconsonant rhythm in his head.
I was worried when I first met Peter, certainly, but I didn't panic, not right away. He was interested in toys and Pat and he liked looking at the books we brought. After a few minutes, he worked up the nerve to come close enough to grab the keys and sunglasses that I dangled in front of him at arm's length. He was also beautiful, just as he was in the photos, though much smaller than we expected. As I watched from a safe distance, I tried to remember that this was scarier for him than it was for us. Who knows what the caregivers had told him, what he thought adoption meant, or, more to the point, where the dark corners of a deprived three-year-old's imagination can lead. He had been in the orphanage since he was five months old and had never left the premises, taken a ride in a car, been rocked to sleep, or even seen many strangers. Two adults oohing and aahing over him, speaking too loudly and in an incomprehensible tongue, naturally might overwhelm his fragile nervous system.
Peter surely didn't know what a mother was then, but he understood enough, or perhaps had endured enough, to know he didn't want another female caretaker. We were told at the orphanage that these children, especially the boys, are interested in strange men and disdainful and distrustful of unfamiliar women. I don't know whether this is because the women caregivers in their lives are unkind or act inappropriately or, more likely, whether the children simply don't get enough attention and nurturing and blame the gender with which they're most familiar. At the time, I was willing to chalk up Peter's obsessive interest in Pat and his active disinterest in me as common, even expected, orphanage behavior. It would be months and months before I realized my child's feelings toward women were complex enough to worry whether they may have had more sinister roots.
(Continues...)
Excerpted from When Rain Hurts by Mary Evelyn Greene. Copyright © 2013 Mary Evelyn Greene. Excerpted by permission of Red Hen Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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