Winchester, Virginia 1997
I walk to the mailbox wishing I would find one last letter from my brother. Instead I pull out a small package. The handwriting on the outside is not one I recognize. But when I unwrap the box, its contents reveal a story that forces more questions than it offers answers. And I wonder how different the ending would have been if we had all made better choices.

Wilmore, Kentucky 1963
My father enters the living room. Although he is not tall, his intensity commands. He strides to Danny, who is crouching in a corner in his white undershirt and diaper. But instead of reaching up to be held, my brother screams in fear, backs into a lamp, and breaks it with his head. Danny has to get several stitches in the emergency room. He has not learned about love in the orphanage. He knows only fear.

This is the first of many stitches and many broken light bulbs, radios, and toys. We super-glue the knob to the TV just so we can change the channels. My mother says that Danny can smash something just by looking at it. Sometimes he doesn't mean to, but most of the time he does. Because he is often punished, it doesn't take long for my brother to turn his fear into anger, and his anger spills over onto the rest of us. "Snake eyes," my mother says. "He has green snake eyes."

By the time I was born—the fourth girl and last child of the family—Danny had already entered our home through the adoption agency. My father was determined to have a son, and my mother liked the idea of taking care of a less fortunate child. They were captured by Danny's ready smile, tousled blonde hair, and the loneliness in his somber eyes. But Danny's vulnerability hid his invisible injury. An injury that was unknown to social workers and pediatricians. An injury that had no name but bore the face of anger.

Fetal Alcohol Syndrome (FAS) was not even recognized until 1973, with no results of significant research available until years after that. So, even though authorities told my parents that Danny's adoption was "high risk," no one really understood what that meant. My parents were idealistic, believing that they could love any child into well-being and success.

Now we know that when a mother drinks during pregnancy, the alcohol passes across the placenta, causing physical and mental impairment in the unborn child. The fetus is the most severely damaged when the mother is drinking heavily in the first three months of her pregnancy—those months in which she might not even be aware that she is pregnant. Most FAS children enter the world with low birth weights and low IQ's. Ninety percent of them are plagued by continuous poor psychological health. MRI and CAT scans now show us images of varying degrees of abnormal brain development in FAS babies. The pictures of these shriveled brains make it easy for us to understand why FAS children display symptoms ranging from mild learning disabilities all the way to significant mental retardation. But in those early years of Danny's adoption we didn't know anything about alcohol's effect on the brain of a developing baby.

We also didn't know that there are several protecting factors that can give children with FAS greater chances of normality in life. One of the most important is living in a stable environment and remaining in the same place for at least two and a half years at a time. Unfortunately, my father was unhappy with our home life, and he believed that "starting over" somewhere else would help. As an academic administrator, he tried several times to begin again by moving us from one college town to another. By the time I was eleven, I had attended five different elementary schools in five different states. For me, the moves made finding friendships, or even feeling a sense of belonging in each place, almost impossible. For Danny, relocation was much harder. The schools bounced him around internally, with many teachers declaring that this kid would never learn to read well or write coherently. Every new start ended worse than the one before. The problems only moved with us until the landslide that was our family threatened to bury us all.

Ellensburg, Washington 1966
My mother tells us hurriedly to get into the car. She is late for her appointment and distracted. As we pull out, she looks in her rearview mirror and sees six-year-old Danny standing in the driveway, wearing a dress shirt, his pajama bottoms, one cowboy boot, and one muddy, untied sneaker. He is smiling sweetly and waving bye-bye. "Who forgot to count kids?" my mother asks, as we back up to let him in the car.

Danny was two-and-a-half years old when he joined our family. It is hard to say whether or not he would have bonded with us had he been placed in our home sooner. But by the time he was six, Danny had difficulty showing affection for, or even any connection to, the rest of us. He had no separation anxiety, and he didn't care who he was with. We feared that he would just climb into a car with a stranger if he were offered candy to do so. It seemed the only real attachment or loyalty he had was to himself and to what he could get for himself.

Danny also cared nothing for his appearance. I learned to tie my shoes before he did and felt pride at his need to ask me for help. He did usually remember to wear his glasses, since he was so nearsighted without them—those glasses that were broken and taped together in so many places. That—along with the gaps in his mouth from losing some baby teeth and having to get others pulled—made Danny's face look almost monster-like when he smiled or screamed. All of this only reinforced my fear of him.

Newberg, Oregon 1968
Danny loves leaping from the hayloft of the barn onto the packed dirt below. Even though the drop from the loft to the ground is only about ten feet, the murky shadows make it seem higher. Danny jumps up and out, each time landing nearer to the closed barn door. He looks like he is flying—flying in the dark. My mother says he's getting flat feet from landing so hard. He talks me into jumping once, but I get bloody hands and knees when I hit the ground on all fours, so I don't do it again. Instead, I watch my brother climb the ladder and leap, climb the ladder and leap. He always lands on his feet. He feels no pain.

Danny often expressed abnormal fear, but he also showed a remarkable lack of healthy fear, which is typical of an FAS child. Because the area of his brain that monitors judgment and impulses was damaged during its development in the womb, Danny had trouble understanding consequences, learning from his mistakes, and controlling his actions. The prevalent thinking of the time was that through behavioral modification, any child could be taught to do what is right. But when Danny was punished, he couldn't link it to the crime. When he was rewarded (rarely) for good behavior, he later couldn't explain why. Cause and effect for Danny didn't exist. But for my parents—and for me—it did. When Danny lied to his teacher or smacked a classmate at school, everyone assumed my parents were poor disciplinarians. And as for me, I was embarrassed even to be known as Danny's sister.

Malone, New York 1969
It is snowing hard, and the roads are icy. Several of us kids are all piled into the station wagon. I am happy because I managed to get a seat by the window. Suddenly we skid off the road and hit a telephone pole. As we stagger out into a snowdrift, Danny points to my bleeding head and starts to scream. He screams louder than the car horn which got stuck on impact and won't stop. Danny won't stop either. We walk to a house nearby and phone my father. Finally he arrives. "Danny quit that!" my father yells. Danny shuts his mouth immediately but still rocks back and forth where he sits on the floor. My parents take me to the emergency room to stitch up the two-inch gash on my forehead. I watch in the mirror as the flesh closes over the bone with each stitch. I try hard to be as little trouble as possible since everything Danny does is big.

By the time we moved to Malone, my parents' relationship had deteriorated into constant tension. Both were driven by their careers in academia. My father hated the messy house—the dirty dishes piled on the counters, the clogged toilets. My mother felt he wasn't helping enough, and told him so, often and loudly. When I asked my dad years later why he kept having kids, he simply replied that he thought it would make the marriage better. But the arrival of five children in six years only added to the strife. Especially after Danny came.

Danny sapped everyone's emotional energy. He loved sweets, which fueled him to more misbehavior. In the 1960s, Dr. Feingold discovered that what children eat affects the way they act. Foods with artificial flavors and colors and those that are high in sugar bolster hyperactivity. My parents adopted the Feingold diet with its strict do's and don'ts, but they weren't home enough to enforce the food rules. Danny ate what he wanted, often running to the closest convenience store and stealing candy in order to binge. And so, even though I was nearly four years younger than Danny, it became my responsibility, shared with my sisters, to "watch" Danny and keep him out of trouble. But even when I chose to stay out of Danny's way so as not to get entangled in his escapades, I often got blamed—and then punished—for not trying hard enough to prevent them.

Glassboro, New Jersey 1970
We lie on our backs on the carpet and stare up at the blinking colored lights that bounce off the ceiling from the Christmas tree. My brother is—for once—both still and silent. I turn my head to look at the lights reflecting off his glasses, and for the first time I imagine what it must feel like to be him—always in trouble at home and at school, never really happy. A rare impulse makes me reach over and hold his hand. Danny bears my touch for a few seconds, but when he begins to fidget, I let go and move out of his wake. He goes outside to ride my new bike without my permission and pops wheelies over the curb. When the tire blows out, Danny throws the bike onto the front lawn and runs off down the street.

Every once in a while I caught a glimpse of what a real brother could be. As I grew older and began to understand that many of Danny's problems resulted from his FAS disorder, I wondered what this brother of mine would have been like without his brain damage—what it would feel like to have a "normal" brother—one that I could look up to and learn from rather than resent. My mind formed big questions. I had been taught that God was good and believed it. Yet how could he allow Danny to be born this way? Why did I have to be the younger sister to someone like Danny? And why, why did I have to try to love him, even though much of the time I felt I hated him?

Goode, Virginia 1973
My mother is spanking Danny again. The branch from the willow tree makes welts across his naked back that begin to bleed. Danny weighs more than my mother, but still, he surprises himself when he breaks away from her. Then his face changes from shock to anger as he turns and runs off toward the woods. "Don't worry," my mother says, "he won't go far in only his underwear."

Several hours pass. The police bring Danny back in a squad car. They say they found him miles away, hiding by a pond in the woods behind someone's house. They question my mother's treatment of her son and warn her as they leave that they won't be so lenient if this type of thing happens again. My mother cries and holds Danny. His face shows no emotion at all.

Shortly after this episode my parents send Danny away to an expensive boarding school for troubled kids. My mom screams at us less when he is gone. I get rest, too, from my brother's constant bullying—all those times he pushes me over, his full body on top of mine, the odor of his perspiration and bad breath suffocating me, holding me so that he can tickle me to tears; all those times he hits me for no reason. But Danny was always ready to play with me when my older sisters said my games were babyish. Now the football is flattened—abandoned in the yard where we used to pretend that we were stars in the Super Bowl. I astonish myself by finding that I do miss Danny sometimes. Our household is much smaller with my father and my brother both gone.

While we lived in Virginia, I had managed to make a good friend of Angie, a neighbor my age who had a younger brother. He followed us everywhere, which Angie hated. But I adored this quiet little boy who was willing to cuddle on my lap, listen to my stories, or patiently wait his turn at hopscotch. He confirmed my idea of what a real brother could be. But I didn't have one. And I didn't seem to have a normal family, either.

My mother taught at a local college. My father had moved away from us to take a job in New York City. He rarely came to visit, and as a result, my mother's anger was many-faceted—frustration in being unable to control Danny, bitterness in being left to raise all the children alone while working a full-time job, and, mostly, deep hurt over her failing marriage.

After the incident with the police, my father came home only briefly to discuss what to do with Danny. My parents were unusually unified in deciding to send him away. My mom looked forward to Danny's absence with relief, and my dad felt that his part in paying tuition to a school for troubled children would satisfy his responsibility for his son's care. As he carried my brother's blue trunk to the car, I heard Dad mutter, "This had better be worth the $30,000 I'm spending."

The boarding school medicated Danny with Ritalin. This drug often works to control the concentration problems that children with Attention Deficit with Hyperactivity Disorder (ADHD) experience. Ritalin is a mild amphetamine, so for Danny, who was born already addicted to alcohol, the treatment only moved him from enjoying its small buzz to hungering for more. Characteristically, Danny chose friends at the school who were not a good influence. By the time he was eleven years old, he had already learned to sniff glue with his buddies. But Danny did conquer one giant while he was at that school. He learned to read and write in a meaningful way.

Seattle, Washington 1975
Danny is locked in his room. My parents have put a strong dead bolt on the outside of his door. Danny howls from inside. My grandmother has just come up for a visit from her house down the street. "He's not an animal," she yells. "As long as he acts like one, we'll treat him like one!" my mother shouts back. And even though she has just arrived, Grandma turns toward the door saying, "Remember he's still only a child! He's barely fourteen years old!" "What do you want me to do?" my mother asks. But my grandmother is already storming down the hill.

Danny claimed a snare drum that showed up in his bedroom was a gift from the owner of the music store. The police that showed up at our door a few hours later confirmed it was stolen. They would drop the charges as long as my parents would vouch for Danny's good behavior.

Danny continues to bang his head against the locked door—over and over and over. He screams hoarsely, "As soon as I get out of here, I'm going to find my real mother. She would never do this to me!"

My parents had brought Danny back from the boarding institution because of its high tuition and spotty success. We had moved into yet another new house and school—another "starting over"—this time close to my mother's parents. Danny now had an adult body, which he liked to show off by leaving his shirts unbuttoned to bare his chest. Yet he still had difficulty understanding the difference between the fantasy world he had created for himself and the real world with rules and mores that he wouldn't or couldn't obey.

It took many years for me to understand that children with FAS are not always cognizant that they are lying. Sometimes the lies are a means of perpetuating the lives they enjoy in their minds. Danny was told many times that his birth mother had given him away to the orphanage, but he was convinced that if only he could find her, she would be perfect, and all would be well.

Danny cemented his fantasy world through the lies he told himself. Between the time he stole the snare drum and the time he carted it home, my brother had truly convinced himself that the drum was given to him as a gift by the store owner. So, Danny was shocked when the family did not accept his story. He could not fathom why the police came. He felt the officers were stealing the trap set from him. As a result, in Danny's mind the unjustified humiliation of being locked in his room after losing his gift was more than he could bear.

That evening my father came and released Danny from his jail-of-a-room. The next morning we found this note, written in angry, but legible cursive:

I am going to find a job and start life on my own if you try and stop me you can't I'll be too far by the time you see this

       Later Dan

After a couple of days Danny returned, thankful for food and a bed, but also belligerent in his unwillingness to reveal where he had been.

Lakeside, California 1977
The police are at the end of the driveway, handcuffing my-sixteen-year-old brother. He has stolen some beer from the convenience store down the road. Danny talks trash loudly to the neighborhood, but his head, with its backward baseball cap, stays lowered. I feel guilty relief as the sheriff puts Danny in the squad car, because I somehow know that this time he will not come back to live with us again.

My parents divorce was final. All of us were teenagers by now. My siblings and I relocated with my mother, one last time, to Southern California where she found a job teaching college English. About a year after our move Danny was arrested and received a sentence of a few months in juvenile detention. When finally released, he chose survival on the streets to the more secure but restricted life of home.

Danny's drug and alcohol usage escalated from beer binges to hard liquor and from marijuana to cocaine. He began prostituting himself in order to feed his needs. Occasionally he would show up at our door, tell us stories of riding the rails and of living under bridges, only to disappear again. I learned much later that over sixty percent of FAS children are expelled or drop out of school. Most of these are eventually convicted of crimes. Those with FAS are gullible and easily led, and therefore often used as fall guys by more savvy criminals. When two or three people are involved in a crime, most often it is only the one with FAS who gets caught and sentenced. My brother was a textbook case of this profile. How could he ever break free?

Seattle, Washington 1978
My father, who has recently remarried, agrees to offer Daniel (as he now prefers to be called) a home. Dad tells me in a phone conversation, "You should have seen Daniel marching in the high school band, looking great in his uniform, and keeping time with that drum!" I'm not sure if the pride in my father's voice is for the relative success he is having with Daniel, or if my dad is happy for Daniel himself. But soon enough my brother finds the party scene, and Dad asks him to move out of the house.

Daniel made several attempts over his life to come clean. That first time, we all hoped that his re-entry into high school (even though he was placed in ninth grade at age seventeen) would work because of my father's involvement and support. Daniel responded best to my dad, out of fear, or love, or a combination of both. When Dad commanded, Daniel obeyed. And if he were supervised carefully, my brother could manage to stay out of trouble for long periods of time.

It's hard to say if Daniel would have been any different had my parents' marriage been a happy one. While the years of my father's absence even before the divorce were difficult for all of us, I wonder if they were not the most damaging to my brother.

But maybe, even if Daniel had come from an intact family, the result would have been the same. In my adulthood I have developed close friendships with three couples who adopted "at risk" children—children who were taken from their birth parents because of histories of drug and alcohol addiction. In all these families, the adopting parents brought as much love and attention into their children's lives as possible. The results, now that the children are grown, are mixed, ranging from some having had to learn the hard way (but at least learning to hold jobs and to pay rent) all the way to one son's repeated incarceration. Since the parts of the brain that control impulses and understanding of cause and effect are damaged in FAS children, it is difficult to draw a line between what they are capable of choosing and what they cannot keep from doing.

Lakeside, California 1980
Daniel comes home briefly. I wonder if he is trying to make up for his early baldness with his grisly facial hair. He is more streetwise than I want to know, but out of what seems to be a pure motive of caring about my safety, he teaches me self-defense techniques. I am adept at finding the sweet spot just between the muscles of the shoulder and the upper arm. I hit him hard with my fist. He smiles and winces at the same time—proud that his little sister has proved a fighter.

Soon after this, Daniel's thirst for alcohol again drove him from home. He knew that when he began to drink, he would become violent, and he didn't want to endanger us. As I stood with my brother at the front door, I wished I could quell the restlessness, quench the addiction that had such a hold. But all I could do was give him a hug goodbye.

Seattle, Washington 1981
Vikki tells me that Daniel is a different person with her. They love each other. They will make it work. My grandfather offers them a house to rent at a reduced rate. Vikki and Daniel marry and have three children all in a row. At first Daniel does seem changed. When I go to visit, we play cards together—Daniel, Vikki, and I. He is clean-shaven, his visits to the dentist have improved his smile, and he is still muscular from street living. I agree with Vikki that my brother is a handsome man.

Daniel tries to keep his jobs as dishwasher or prep cook, but the pressure of providing for a family of five is too much, and he goes back to drinking. Within days of his first binge Daniel's home life turns bad. Vikki claims he has sexually abused the children. She gets a restraining order and a very quick divorce. Daniel calls me, crying. "I'll never get to see my kids again! I love them! You don't think I would ever hurt them, do you?"

I didn't know if the charges Vikki leveled against Daniel were true, but I did believe they were possible. Daniel was able to do anything when he was under the influence.

After the last of his final paycheck as a dishwasher was spent, Daniel sobered upjust long enough so that for the first time he felt a consequence—the loss of his family because of his drinking. It devastated him. And so Daniel ran in the only real direction he knew—toward the streets where he could find relief for his addiction and bury pain in ways that required no money.

Haviland, Kansas 1988
"Daniel has tested positively for HIV," my mother tells me over the phone. "We've offered him a place with us as long as he stays sober and tries to work."

Daniel was twenty-seven years old when he received his diagnosis. We can only conjecture how long before this he actually had contracted the illness. Today we understand that AIDS is not easily spread through saliva or through casual bodily contact, but in 1988 we knew so little about the disease. When Daniel first arrived at my mother's, she sent me a picture of him. I stared at this stranger, whose chest was gaunt under its gold chain, and I feared what I did not know.

I had been married for two years by now, living in New Orleans with a husband who had a good job. I was trying to put my childhood behind me. I respected my mother and her second husband for their willingness to take Daniel in, but I was content to hear about it all from a distance.

And I did hear about it—from an unlikely source. Daniel started writing to me about his life. Every week or two for over a year I pulled a letter out of my mailbox, painstakingly typewritten—each, like this one, revealing a little more of the brother I had never really known:

At 15 years old i started using alcohol and pot and whatever was cool at the time to use ... Life as begin as cool got me jail time by the year and hangovers by the day so to me when i thoght i was begin cool i was just begin one big fool ... Well during all this fun i found time to get married and have 3 children and because of my unwillingness to stop drinking i lost them as well ... God did not give up on me even when there was a knife at my throat God took care of me and let me live because he had not finished with me yet and this I truely belive. Well as time went along thigs got so bad that I took a long look at what I was doing ... and started to understand that I had better quit or die ...

New Orleans, Louisiana 1989
I am finishing my Masters in Education degree from Tulane. My studies have included substance abuse and addictions in students of all ages. On an intellectual level I have gained a new sympathy for Daniel; emotionally I am more attached to him than I ever have been. Is it because of his letters that are so honestly written, or is it because I am carrying my first child that I revive my old questions about the fairness of life—why some are born healthy and others enter the world suffering? I look closely at the homeless along the Riverwalk and in the French Quarter, trying to imagine my brother's face in the loneliness of theirs.

Many times since childhood I vacillated between guilt at being born capable and self-righteousness that I was not tempted to ruin my life as my brother had done. The birth of my son changed that. I knew as I held him that my baby was whole and healthy through grace alone. And then I read this in a letter from Daniel:

Why is it that people have this funny idea that alcoholics are not people? I think that some people don't understand the problem at hand [and they think they have to] get all these people off drugs and then decide whether they are human or not.

All my presumptions and judgments about life up until then were self-righteous and shallow. I had witnessed Daniel's outer struggle but had never understood his inner turmoil. Had I truly seen him as a person before? He was a person who had value simply because he was human. Just like me, just like my son.

Haviland, Kansas 1990
I place my three-month-old son into the arms of his Uncle Daniel. My fear that Daniel's AIDS virus will somehow infect my little one is overpowered by my compassion toward the man who lost his own children.

I flew from New Orleans to Kansas to visit my mom, her husband, and my brother. The robust body and ready laugh of the Daniel I saw in person replaced the unhealthy picture of his past. He was participating in a new drug trial which was testing an antiviral that might slow AIDS' progression. It seemed to be working. Daniel took great care in sanitizing the dishes we used, and he would not kiss baby Nicolas even though we knew by then that AIDS is almost impossible to transmit through saliva.

As I flew home, I hoped that Daniel's illness had scared him into a better life. For a short while it did. But then in his restlessness he wrote:

I just don't fit in anywhere anymore ... I seem to be in the way more then anything else ... I have not been feeling good about where I am in life and I need this also to change but how?"

Eventually Daniel's gremlins—those demons that hissed in his head that he was unloved, that he would never be well and whole, that he might as well drink because it made him feel better than being sober—forced him from my mother's home.

Las Vegas, Nevada 1995
I talk on the phone with a stranger from Las Vegas. He has made sure that Daniel has been getting good care at the hospital. This pastor has not only been a spiritual support to Daniel but also a practical friend in the last few months. "Call him," the pastor says. "It's important that Daniel feels the love of his family here at the end."

I call, not knowing what to say. How do you wish someone who is dying a Merry Christmas? Daniel's voice is weak, but he is obviously happy to hear from me. "Is there anything I can do for you?" I ask. "Could you find a small tree with blinking lights and mail it to me?" he says. "And," he pauses, "will you promise me that you'll remember me each Christmas when you see the lights?"

In the next few weeks I learned that it is not the AIDS virus itself that kills, but that AIDS affects the immune system so that the weakened body in the end cannot fight off infection. The most common infection is pneumonia. Daniel's 5'8" frame dropped from 160 to 70 pounds. Fluid filled his lungs. He burned with fever while he slowly suffocated.

Winchester, Virginia 1996
Daniel's grave illness draws my mom and me closer. We talk on the phone more often. "I'm tutoring an FAS boy named David, and this kid is really a challenge. I know the only reason I can work with him is because of growing up with Daniel. And guess what? David is starting to read!"

My husband and I settled into Winchester, vowing to give our son and new baby daughter the permanence and safety that Daniel, my sisters, and I had never experienced as children. While I knew that Daniel was too weak to write letters anymore, I kept hoping that he would write one in which I could find some kind of resolution—some closure to the mystery of why this all happened. And then I re-read one of Daniel's earlier letters, written while he was sober and closest to his true self:

Well sometimes I sit here and think to myself that life must have some kind of oppurtunity for everyone if they just take the time to figure it out. Well it seems that mine is to be here for you as well as telling others about this problem and to help kids and adults on the road to recovery! I leave you my love and hope for better things to come ... that you will always remember me as the brother who made you stronger as a person with my ways and I hope you understand that. I loved all of you even when it seemed I did not.

This was not closure. It was continuance. Daniel was passing his baton—to my new student, David, and to so many others whose lives of challenge continue to teach me flexibility and patience, and what it really means to love. Even when it sometimes seems I do not.

Las Vegas, Nevada 1997
"Well, I made it to thirty-six," Daniel rasps through the phone when I call on his birthday. "But really, I can't wait to get my new body. I'm ready to go."

I had never heard Daniel sound more at peace. He probably didn't mean it this way, but I couldn't help but think that Daniel had been at war with his body—with all its brain damage and addictive tendencies—from the day he was born. Through my tears and despite my questions, I could be glad that this man, whose whole existence up until now was constant turmoil, could finally rest.

Winchester, Virginia 1997
I walk to the mailbox wishing I would find one last letter from my brother. Instead I pull out a small package. The handwriting on the outside is not one I recognize. But when I unwrap the box, its contents reveal a story that forces more questions than it offers answers.

In a nearby graveyard I open my arms to the wind and release my questions, along with my brother's ashes, to the sky.

 


Images appear courtesy of Sara Whitestone.