Literary Mama writing about the many faces of motherhood
A Boy Like Mine

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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.


Susan Alderson Hoffmann writes educational materials for art museums and public schools in the Los Angeles area. She and her husband have raised two sons and many dogs in a Craftsman-era house haunted by the ghost of Richard Nixon, who ran two congressional campaigns from the front room. Now semi-retired, Hoffmann plays her great-aunt’s violin in an amateur string ensemble and writes nonfiction essays inspired by her family.


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Susan, Thank you so much for sharing your story. My youngest daughter is autistic and severly mentally retarded. Last December, I visited the Imperial War Museum in London where I stood in front of a picture of a mentally retarded boy who killed in the Holocaust. I couldn't help it, I just sobbed, thinking of my daughter--then just five--she would have been among those killed--a boy like yours and a girl like mine...
What a moving story! Thanks for sharing.
Beautiful story.
Amazing.
thanks for this - i have a son with fragile x and a a daughter who we know is a carrier, like me. as common as the syndrome is, i still rarely read anything like this about it - and have yet to meet another family in person.
By putting names and faces to scientific terms you remind us that every life has value. Thank you for sharing.
We are here, and we are many, the ones with a defective gene... but all of our xs are unique, beautiful lives worth living....
a beautiful, moving, haunting story. my son has fragile x, I am a carrier... my son is nonverbal, I dream of his voice. fragile x, strong love. ajmz
I, too, am a Fragile X carrier, diagnosed not because of the syndrome in my children but because of the side effects being a carrier gave me. But I love this piece for its power and beauty, not just because it describes a syndrome of which few are aware. Thank you so much for sharing it.
Susan, this was a moving piece. Thank you so much for sharing your story. My 10-year-old son has Fragile X Syndrome and could've been that boy in the photo in a different situation. Very scary. I love your two-part piece.
Susan, Peggy shared your article with me and I will thank her for doing that. It was a powerful piece and it will become a treasured memory because of having had the opportunity to meet and spend some time with you. Thank you for sharing! Jan
Wow, what a beautiful, moving story. Thank you so much for sharing.
Thanks for sharing this very touching story. I just came across this site and will definately be coming back. Thanks.
Susan, I have to admit curiosity to read your essay, because my maiden name is Hoffman. Also, I am a new writer and have an autistic son who just celebrated his 21st birthday. Because of his challenges, his communication and processing skills leave him lonely and aware enough to know what he's missing. I am also of German descent. A Boy Like Mine expresses truth that we can all use, both historically and currently. My favorite lines are: 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. Thanks and Blessings, Susan Anderson
This was wonderful but also disturbing. Your writing is very descriptive. I could see what you saw, feel what you felt. Thanks
Susan, thank you for a beautiful and haunting piece. Keep writing.
Thanks for sharing. Your story is one that I can relate to.
Haunting, moving, and gorgeously written. Thank you!
Beautifully written and very poignant. I love what you wrote about Harrison's "decency." That says so much. Not many parents use "decency" as the first adjective to describe their child. I have decent children too.
Susan, I have tears in my eyes. This is so moving and terrifying. Thank you for your words.
i also wanted to say, as susan anderson, the most poignant and beautiful thought for me, was in the paragraph that begins, "more and more in America. . ." wise, and deeply thought-provoking words that i wish more could hear. thank you so much for sharing your story.
I am writing with tears in my eyes. Susan, I am of Jewish decent and the mother of a son who has Cerebral Palsy. He, too, would have been among the first to die in the days of Adolph Hitler. Although he is in a wheelchair and requires full physical care, like your son, he works at a supermarket, and, has done so for almost 12 years. He sits up front each day and greets the customers as they enter the store. He wears a name tag as your son does and an apron with the name of the store. He is so loved by the customers and employees and truly enjoys every minute of his job. He has lunch in various restaurants each day after work and goes to the local library, the movies and bowling in the afternoons. Life, although a struggle for him and my husband and myself, is good for all of us. Those MONSTERS know not what they did! My love to you and your family. Thank you for writing so beautifully.
Thank you for this essay. It's so beautifully written and rendered. You surprised me. I didn't expect you to bring us into the present with a glimpse of you and your son now. But I am so glad you did. My son has Asperger's. I send you blessings from someone who knows.
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