A Boy Like Mine

The boy in the photograph looked sad and frightened. He must have been ten, perhaps twelve years old. Someone had carefully buttoned his shirt, including the tiny buttons at the neck that kept a short, narrow tie in place under a starched collar. His neatly combed hair framed a boyish face that seemed completely normal, except for those hauntingly sad eyes.

My own young sons were in the gardens outside the museum, exploring a maze of paths through a huge expanse of blooming heather. To them, this trip was no more than another weekend adventure, like the summer festivals we visited or the expansive urban playgrounds where they could run and play with abandon. To my husband and me, this was a different and darker excursion than our usual trips to the shores of the Baltic Sea and the romantic little villages tucked into the moors, so typical of this part of Germany.
I looked closer at the label next to the photograph. This boy was a victim of the Holocaust, murdered because he was mentally retarded. He belonged to a group of people identified by Adolf Hitler as having Lebensunwertes Leben, lives unworthy of life. Hundreds of thousands of people with disabilities, including this young boy, had been killed and buried at camps like Bergen-Belsen, where I stood, horrified, on that late summer day in 1992.

“I had no idea they murdered retarded children,” I said to my husband.

“It’s sickening,” he said.

We grew quiet, standing alone in a room that provided nothing to comfort us. No seats for resting. No humming videos or interactive computer kiosks or large photo blow-ups to take our attention away from a painful recognition.

Our six-year-old son, Harrison, playing outside with his brother, had been identified by teachers and doctors as unusual. When he was three, a psychologist conducted an intelligence test that revealed an odd pattern of abilities. In some areas, Harrison scored a “3,” putting him in the profoundly retarded category. In others, he scored an “11,” in the above-average range. No one knew what this meant — he was simply too young to diagnose — but we were afraid of what everyone intimated, that our son was mentally retarded.

We didn’t have to say it out loud. The boy in the photograph could have been our son.

I looked away. The late afternoon sun cast long shadows across the plain, wooden floors. I followed their path to a small window and looked outside, needing a break to catch my breath. The air was heavy with mist creeping slowly in from the sea. Clouds dragged closer to the ground, their tops shimmering in rich blues and purples. I loved this time of day in northern Germany, when the light teased the approach of darkness with these lush, beautiful colors.

I lingered over the view, remembering the many times I had enjoyed visits to this region, during college and later in grad school. When my husband won a fellowship at the university at Hanover, not far from Bergen-Belsen, I looked forward to the quiet beauty and remote privacy of a place that felt like a second home to me. But not today.

I crossed the empty room and returned to the photos. There were hundreds on display. Each had a simple black frame surrounding small black-and-white images. One after the other, they lined the walls of a building that had the eerie feel of someone’s home, deserted years ago. I puzzled over a photo of women lined up along a sidewalk leading to a flight of stairs. They were young, perhaps in their twenties or thirties. Their backs were to the photographer, so I couldn’t see their faces. But they seemed to be well dressed and relaxed as they waited patiently to walk up the stairs and enter a building that looked as though it might contain apartments, government offices, or perhaps a department store on sale-day.

The label identified the women as members of families known to have relatives with mental or physical defects. On the day this photograph was made, they were submitting to a forced sterilization procedure that would prevent the birth of undesirable children.

My stomach pulled into a hard knot. I might have stood with those women, had I lived in Germany in the 1940s. Just as I was coming closer to accepting a diagnosis of mental retardation for my son, I was wondering if his condition was my fault. My sister’s son had an intellectual disability. Did she and I inherit a genetic condition we unknowingly passed to our sons? I looked at the photographs, read the labels, and felt the long arms of fear reach around me. I quickly left the exhibition area and went to look for my boys. I felt an urgent need to take them by the hand.

My husband joined us outside, and together we walked along paths through an immense stand of heather that surrounds the memorial. The scrubby evergreen plants, which open their tiny purple flowers in late summer, stretched across the mist-shrouded moor. A great calm came over me. People may have caused the atrocities here, but nature triumphed, beautifully, tenaciously, and completely. In every direction, a soft cloud of purple floated above plants that had grown together so densely, I sensed nothing could ever break their hold on this place. Later I would learn that heather’s existence depends on human activity. Forests burned long ago and woodlands cleared for farming had created an ideal environment for this beautiful plant. Human activity, too, would determine its future. If not maintained, the forests could reclaim it; the past might reappear.

And in fact, the past did appear among the heather. Simple stone markers noted mass graves: Hier ruhen 800 Tote, April 1945 read one of the markers, “Here rest 800 dead, April 1945.” Another noted 2,000 dead, and yet another 5,000. Anne Frank’s young body lay among the victims, as did the remains of the frightened little boy I saw in the photograph. A marker with a French inscription noted, Le temps passé, le souvenir rest. Time passes, memory remains.

As the day slipped into evening, we walked the boys back to the car. I held Harrison’s hand tightly. He was rambunctious in those days and needed firm guidance. But I held him close for another reason. I knew our futures would be intertwined, but in a way I couldn’t yet imagine.

***

Harrison graduated from high school in 2004. Ever since, he’s been a proud employee of our neighborhood grocery store, retrieving shopping carts, bagging groceries, and wishing customers a nice day. Every shift begins with a routine I’ve come to relish.

“I start at 12:15,” he says. “So I leave the house at 11:45, right?”

“Yes. And remember to look in the mirror to see if your tie’s under the collar.”

“I did already.”

He looks away as I smooth the collar over his zipper tie, one of many in his collection of brightly colored and patterned ties he has purchased for work. Like other people his age, he wants his personal style to say, “I’m cool.”

This is the adult version of the little boy whose hand I held so tightly at Bergen-Belsen, back in 1992. The following year, a DNA study revealed what I had feared that summer. I was a carrier of fragile X syndrome, the cause of my son’s mental retardation.

“All set?” I ask.

“I’ll fill my water bottle and let’s roll,” he says. I watch him as he slips his “Hello, My Name is Harrison” name badge over the top edge of his apron, the one emblazoned with the corporate sponsors promoted at his store. I smile in wonder, enjoying yet another wonderfully ordinary day.

More and more, in America, this scene is exceptional. Prenatal tests now identify fragile X syndrome, along with markers of an ever-expanding list of conditions affecting the development of a fetus. The tests don’t predict the severity of a condition like mental retardation, nor can they indicate any of the human qualities I so admire in my son — his decency, his sense of humor, his love of life.

Harrison is the face of fragile X. So am I. We are imprinted with a genetic flaw. But wrapped around my own faulty X chromosome is a powerful strand of memory. It holds the face of the frightened German boy and the image of the women lined up to be sterilized, their sacrifice to keep the German race pure. I will never forget them, and I will never forget the sickening feeling that I was looking, not at people from a distant past, but at myself and my son.

Le temps passé, le souvenir rest. Time passes, memory remains.