Before my mother died that August, she gave us the words we needed to talk about her death with my adult brother, Charlie, who has severe autism. Tell him this, she said: “Mother loved Charlie very much, but Mother got sick and couldn’t come home again.” She phrased it in the idiosyncratic grammar my family uses when speaking with Charlie—direct, to the point, and without personal pronouns like “you” or “she” because these are words he doesn’t seem to understand.

Our mother also didn’t use the word “death” when telling us what to tell my brother and she didn’t raise the expectation that we take over his daily care. Years ago, she and my father had made sure he was placed in a group home with other disabled adult men. She did expect me to become my brother’s legal guardian once my father, who survived her, passed away. And she expressed a hope that Charlie’s life would continue without change. Over the years, I’ve tried, with effort, to fulfill that promise. I am the eldest and only daughter in the family. My arms permanently open to catch whatever falls.

Our parents brought us up in suburban Detroit until I was almost fifteen, Charlie twelve, and my brother Bill, six years old, when we moved to Kansas City, Missouri. It would be four years later before my parents arranged for Charlie to move from the Michigan institution where he had been living to our home on 63rd St and then later, a group home nearby. As an adult, Charlie uses few words, sometimes speaking rapidly and loudly, with one hand raised in the air as if he were a TV host. He seems to understand what we tell him although conversations are often one-sided interviews because like many people with severe autism and language deficits, Charlie cannot predict what another person may be thinking. He does not initiate speech unless he is really confident in the response he might receive. The short monosyllabic phrases he uses were learned from our mother in the years before he was institutionalized at the age of eight. Doris Anderson was trained to be a teacher and a “speech correctionist” as it was called in the 1950s and 60s. She earned her bachelor’s degree at Florida State University and started her career by breaking segregation laws to provide speech services in all-black schools. She left the South to marry my father, and continued working in the schools of urban Detroit, until her second pregnancy with Charlie.

One of the things I miss most about my mother is her lilting Southern cadence, a speech given to generous descriptions and well-turned metaphors. Our mother loved the beauty of the human voice, as expressive vehicle or musical instrument. This love led her to assist people from all walks of life—children born with cleft palates, wounded war veterans, refugees new to the English language. The shape of the tongue reaching for the letter “r” or the stop of breath required for the sound of “d” at the end of a word were movements whose perfection she knew instinctively, the way a dancer knows the forms of the bolero or the saraband. One of the central ironies of my mother’s life was to give birth to a child who would only learn to speak in halting tones, a child who required all of her maternal patience and vast intelligence. More than once she rose to the occasion: in addition to teaching him to speak by singing songs with him over and over again, she calmed Charlie’s temper tantrums by rolling him up in a blanket like a cigar and placing him down on her bed, immobile and peaceful for the first time in twenty-four hours, his penny-brown eyes finally closed.

Our mother was also an addicted smoker for almost forty-five years. She had tried to quit several times and succeeded months before we heard the dispiriting news of her terminal lung cancer. She claimed that nicotine took the edge off her nerves, and throughout my childhood both parents filled ashtrays throughout the day, the house dense with smoky dust motes. In January when I flew from my home to be with her in Kansas City the night she was diagnosed, she told me, “Don’t feel sorry for me. I loved smoking.” It started as a form of rebellion in the conservative south of the 1940s. With her girlfriends in tow, my mother used to drive down Tampa’s Bayshore Boulevard with four or five cigarettes hanging from her mouth, a stunt to razz the more sedate onlookers. In her last days, she breathed with the assistance of a portable oxygen canister, her voice still melodious between outbursts of coughing.

The evening of our mother’s wake, Bill, my youngest brother, and I picked up Charlie from the group home where he waited for us, holding his good clothes on a hanger. Back at the house, the one he knew as his family home, we helped him put on his shirt and suit jacket, we clipped a few fingernails, buzzed his chin with the electric razor, just as our mother would do on Sunday mornings before church. A funeral home was not a church, but its close resemblance would make it easier for him, Bill and I reassured each other. There would be people he knew, candles, hand-shaking, flowers. Charlie likes to follow rituals, to imitate what others were doing. But would he understand that his mother had died? We didn’t know if Mom would be laid out in an open casket because our father, who had made the arrangements, didn’t remember. This could be a problem, Bill and I realized. We repeated as carefully as we could the words of farewell our mother had told us to tell him. He frowned, eyeing the road ahead as we drove. Entering the visitation area of the funeral home Bill and I soon saw the open casket, our mother laid out in a blue Swiss-dot dress. In silence, we each walked up to her and gave our parting words. When it was Charlie’s turn to say good-bye, he stood over the casket, looked into his mother’s face, and then raised his hand toward her, speaking in a loud voice, “Good-bye Mummer, good-bye Mama, good-bye Doris Anderson.” Finished, he turned to join the rest of us, watching, in wonder.

When Charlie turned six few doctors and no educators knew how to diagnose, treat or teach someone with autism. Special education classes were offered to children with mental retardation, but because a doctor and the school system assumed my brother had a mental illness in combination with mental retardation, he was barred from public school classrooms. After countless evaluations and rejections, my parents realized that the only solution to this double denial of education and health care was to place him in a state-sponsored institution. One morning in March they drove him three hours away to the Fort Custer State Home in Augusta, Michigan. On a summer visit I saw Charlie’s new neighborhood for the first time—block after block of mustard yellow army barracks overgrown by weeds and cattails. On the way home without him, the highway became filled with mirrored puddles that appeared on the horizon and then vanished the closer we got. My father calmly explained the mirage: a bright pool of water in the distance, a small shimmer of hope, yet as soon as you arrive, it disappears. In truth, it was never there to begin with.

These were sharp cruelties. They resemble the cruelties of neglect, though my family wasn’t poor or underserved. In another generation, my brother could have been locked away in a closed ward for the duration of his life. Instead, he came home to our family house on 63rd St. in Kansas City and grew up to be a calm, gentle adult, not the seven-year-old who roller skated in his bedroom. Not the child who chewed paper, then flung it to the ceiling where it stuck. Not the boy who hoisted a garbage can at his mother, the boy who kicked the kindergarten teacher, the boy who kicked me. Years later he has a sheltered workshop job in Kansas City, a city with many parks and recreational activities, a place in an adult group home where he is loved, and a chance to prove himself as a bowler and a Special Olympics champion.

Six years after my mother died in a rented hospital bed in the family living room I took my father to Armour Home, an assisted living center and nursing home not far from the house on 63rd St. It was a Saturday morning in April, and the redbud tree he loved to view from his kitchen window was in full bloom. A day earlier I had explained to my Dad that the decision we had made together for him to move was now real. We packed a few things in a suitcase. I explained again what kind of room he would have, where he would eat dinner, how often I would come to visit. My father showed me the small army green rucksack he had owned since his discharge from the infantry at the end of World War II. In this bag he had packed the items he wanted to take to the nursing home: a comb, his checkbook, eyeglasses case and a pair of pliers he used to open jars and bottles. My father had rheumatoid arthritis, his hands curved into claws that grasped clumsily at doorknobs and chairs. He had been a newspaper reporter for The Detroit News, and his hands once typed on an Underwood manual at 60 words per minute, typing through the Civil Rights movement, the Vietnam War and Russian invasion of Czechoslovakia in 1968. As a kid, I told my father I wanted to be a writer, like him. “What should I do?” I asked. He said, “Learn how to type.”

The story of a parent’s decline is the sound of ripping cloth and quiet tears, of choked back anger and sighs of relief. My father lasted one week in the assisted living center of Armour Home before he had to be moved to the home’s nursing unit. Within that time, I needed more money to pay for his care and began the process to sell the family house, the one Charlie knew as home. Everything in the four-bedroom house would have to go, all the papers sifted, all the pots and pans boxed, all the beds unframed, the rugs rolled. One morning I began with the kitchen, taking down the stainless-steel frying pan whose handle my mother had cleverly mended by winding ordinary cotton string around and around, then coating it with Elmer’s glue to seal the grip. Next were the blue cowshaped cream pitcher, the wooden spice rack, the line of flour sack-shaped canisters, the roasting pan, the nested mixing bowls, the plastic cup measures, all packed in large boxes.

In Kansas City, I work for an organization that resettles new refugees. At the time of my father’s move, a group of Somali Bantu families had just arrived. Most had been warehoused in a camp in northern Kenya for over a decade. Of course these refugees arrived with nothing and had to learn about stoves and refrigerators, microwaves and cell phones. Highways, airports, speeding cars, trains and busses were all new to them. They had to learn English, get jobs, support their families. They needed warm clothes to wear to work and school. To learn how to cook they needed my mother’s plates and cups, her pots and pans, including that mended frying pan. Ishmahan, one of the interpreters for the refugee women, told me that some days, after cooking class, the women lingered in the training kitchen, enjoying each other’s company. Young and old, the women would lean back, sip coffee from my mother’s tea cups, and think of her, an elegant, kind lady, watching them. “In Somali culture, we think that way about those we love who’ve died,” she said. “They’re somewhere, looking at us, watching us. Do you believe that, too?” My answer was yes.

After only five months since his move to the nursing home, my father died. I was with him at the time, late at night in his nursing home room. I had now seen both my parents’ dying mouths form an oval ring to shape the breath they left me.

At my home after the funeral, Bill and I marveled at the different approaches to death our parents had taken. Our father resisted going gentle into that good night, while our mother accepted her diagnosis of terminal cancer almost fearlessly. After our mother died, our father had lived for another six years with multiple illnesses. He had experienced so many brushes with death, we concluded, he couldn’t stop fighting, even when the odds were stacked against him. The list of near misses we knew about included five major battles in World War II as an infantryman, a plane crashing right beside his car as he traveled the expressway home one morning after working midnights, a gasoline truck exploding in front of him on that same Detroit expressway, and a metal projectile flying into his car windshield in Kansas City. He was eighty-one when he died from natural causes.

That afternoon Bill and I decided to take Charlie for a last look at the old house before it would be sold and out of our lives forever. The late September air was brisk, with leaves scattered by strong winds riding down from the Rockies. It was a quick stride to 63rd St. and Charlie gained speed as we approached. We let him walk ahead to the back steps, the path he knew so well. At the door, I turned the key and said, “The house is empty now.” When the door opened, Charlie bolted past us through the kitchen, opening closets, cupboards, announcing aloud over and over, “House. Empty. Now. House. Empty.” The words became softer and softer as he wound through the other rooms, until his voice was no more than a whisper to himself, “house empty now.

A sheer surprise, his quiet echo. Bill and I then realized that to Charlie, losing the house meant the same thing as losing his father and mother. And it was our own deficit of understanding, our own inability to predict what Charlie was thinking that made it hard for us to perceive his range of feelings about death and loss. For a few more minutes Charlie, Bill and I stood together with our own thoughts in that empty house. Then we left, locked the door, and trudged through the afternoon’s ephemeral, fallen leaves.

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