Samantha Paige Rosen
My life with Aunt Stephi was framed by Melmark, a private residential program for children and adults with physical and mental disabilities. Founded in 1966 in a thirty-five-room mansion by a couple whose child had Down syndrome, Melmark grew into an eighty-acre campus with horses, walking trails, special needs playgrounds, gymnasiums, and residences that were the kind I wanted to live in when I grew up: community feel, compassionate staff, common TV room.
For the first half of her life Aunt Stephi lived in the house where she was born, cared for by my grandparents and my dad. When Aunt Stephi turned twenty-eight my Bubby and Poppop made the decision they’d been dreading. They sent her to live at Melmark for better care than their aging bodies could provide.
The Word We Don’t Say
One of my earliest memories is Dad teaching me about the word “retarded.”
“Even when I was your age,” he said, “if someone used that word, I’d say, ‘Hey! My sister is retarded. That’s not a nice word.’”
I cringe whenever I hear the word, but I’ve never corrected anyone. I know I should, if not for Aunt Stephi then for Dad, but I’m too polite.
I once asked Dad who he imagined his sister would be if she could walk and talk. Married with children? An aunt who spoiled us? He replied, “I just don’t know.”
Dad’s favorite picture of Aunt Stephi is the only evidence of her as a vertical being. She’s six years old, wearing white high-tops with lead bottoms, which helped her balance, and braces the length of her calves.
Tilting her head to the right, high ponytail flying, she looks beyond the camera, holding her fists characteristically in front of her chest, bent stiffly at the elbows. Dad is in the background, turned away from the camera, a three-year-old boy unaware of how many responsibilities lay ahead. To me it looks like Aunt Stephi’s dancing. Dad disagrees. She’s trying to keep herself upright.
Aunt Stephi couldn’t talk like the rest of the family, but she vocalized. She called Dad “Bruh.” When asked a question, she yelled, “yeh!” or shook her head for “no.” She recognized people, places, and things.
When Dad and Aunt Stephi were kids, Bubby set puzzle pieces with drawings of fruit on the floor and said, “Stephi, pick out the banana.”
And she did.
There were no preschool classes for children like Aunt Stephi, so Bubby approached the Montgomery County Association for Retarded Children for assistance. If she could find a venue and students to attend, they would pay for a teacher. Bubby asked a rabbi at her synagogue about using a room.
“There are no retarded Jewish children,” was his response.
The second synagogue Bubby called upon was welcoming, but there were never more than four or five kids enrolled at one time. Most parents didn’t want to publicly admit there was something different about their children.
My grandparents’ neighbors, the Tourigians, had a big backyard, a wide open space with no trees—perfect for a makeshift baseball field. The local kids played there, including Aunt Stephi. Bubby helped her hold the bat at home plate. The ball was pitched, they swung together, and Bubby ran her around the bases. Making Aunt Stephi a part of everything wasn’t just a way of life for my dad’s family—it was routine for all the kids in the neighborhood.
As the second oldest of three children, Dad helped his parents care for Aunt Stephi for over twenty years. He bathed her, dressed her, fed her, brushed her teeth, took her to the bathroom, changed her adult diapers and menstrual pads, got her off the van when she came home from school, pushed her wheelchair during walks outside, drove her around, and even brought her along when he spent time with friends. Dad chose to live at home during college. No rumination; no regrets.
The Last Time
Aunt Stephi was always trying to hug someone. She squeezed too tightly, pulling my hair and drooling on my shirt. But it made her smile, revealing two missing front teeth from that time a Melmark resident accidentally pushed her out of her wheelchair—a story I asked to hear over and over again. When she graduated from her special-needs high school, she opened her arms to the principal as he struggled to hand over her diploma in a professional manner.
Aunt Stephi particularly loved hugging my dad. In the ten years before she died, when I was no longer a child, her body became more rigid and distorted. The resting state of her arms was crossed in front of her chest, wrists bent inward, and fists so tight it was difficult for anyone to open them. This is mostly how I remember her. The last time I saw Aunt Stephi was two months before her death. I hugged and kissed her goodbye. She couldn’t hug me back.
The alternatives to Melmark were places like the Pennhurst State School and Hospital, which housed mostly children and operated until 1987. Pennhurst was perpetually understaffed and underfunded, infamous for patient abuse, and overcrowded by almost 1,000 patients. The goal of these state-run institutions wasn’t to ensure the well-being of the disabled; it was to keep the disabled from the rest of society.
Like the couple who founded Melmark, my grandparents refused to send Aunt Stephi there, although it meant sacrificing their adult lives to care for her. Later, they sued the State of New Jersey for failing to provide adequate services to the developmentally disabled, as required by law. In winning this landmark case, my grandparents afforded Aunt Stephi the opportunity to live at Melmark for the rest of her life.
I didn’t always like going to Melmark. The drive was almost an hour long, the residents were loud, the playgrounds were strange, and it seemed as though they had fifty events a year, all in the middle of what might otherwise be a Sunday of playdates and TV. There were Christmas parties, Hanukkah parties, Easter parties, Passover parties, Purim parties, play performances, and birthday parties Bubby organized for Aunt Stephi which featured, in various years, the Eagles cheerleaders, the Philadelphia Mummers, a string band, square dancing, and circus clowns on stilts. My grandparents expected us to show up for each and every one.
“For Aunt Stephi,” they’d say.
But I knew it was for them, too.
I wanted Denise to be Aunt Stephi’s best friend. Could Aunt Stephi have a best friend? Plump with short, gray hair and a smile spanning the width of her face, Denise is still quoted at our dinner table. When I was seven, Dad, my sister Jen, and I spent the day with Aunt Stephi and a group from Melmark in Ocean City.
In the middle of our pizza lunch on the boardwalk, Denise blurted out, “Going boardwalk! Going swimming! Going bathing suit! Going beach! Going omnibus!”
Sometimes I think about Denise and hope she’s still alive, laughing at Melmark like nothing has changed.
Eyes Open Underwater
As a kid, I swam with Aunt Stephi on August days in Atlantic City. We couldn’t go to the beach on Aunt Stephi weekends, but Dad or Poppop held her in the shallow end of the pool. She loved to splash her hands against the cool water so I splashed too. I swam in circles underwater around Aunt Stephi, keeping my eyes open despite the chlorine, hoping to see her legs move.
Our family revolved around Aunt Stephi. When my sister’s preschool had VIP Day, all the kids brought grandparents, but she chose our sun. The director of this private, Jewish school informed my dad that it would be better if Aunt Stephi came on a separate day to “have the experience to herself.” Dad recognized she didn’t want the other VIPs and big donor parents to see Aunt Stephi. When he pushed back, she said Aunt Stephi would “scare the children.”
Dad scheduled a meeting. It was brief.
“Jenny wants her aunt for VIP Day,” he told the director, “and she’s coming the same day as everyone else.”
A picture from that day hangs in our family room next to Dad’s seat at the dinner table. Jen beams as she hugs Aunt Stephi, who is also smiling and sporting a cardboard award ribbon around her neck with the text VIP: Aunt Stephi.
Stephanie Fern Rosen died on January 14, 2013, Poppop’s eighty-fifth birthday. She was fifty-six. There had been signs of decline the family didn’t want to accept—trouble swallowing, even less mobility, uncharacteristic depression. Over the years, her internal organs pushed up higher in her body and crammed together. The day she died, her abdominal contents had forced through a hernia in her diaphragm, squishing her lungs to the side, making it hard to breathe. Then she choked, as she often did, on saliva or a drink, which directed the fluid into the trachea instead of the esophagus. From the trachea, the fluid went into her already compressed lungs, causing inflammation, which made breathing impossible.
Aunt Stephi died from respiratory failure in an ambulance, a Melmark staff member by her side.
I lived 3,000 miles away and didn’t come home for her funeral.
Sometimes I find myself missing Melmark. I miss Ronnie, a tall, dark-haired man with Down syndrome, who took the microphone at his appointed time and very formally thanked us for coming to whatever celebration we were having. I miss Doug, a short, dark-haired, developmentally disabled man, who swiped the mic from Ronnie to talk indistinguishably to us, his beloved audience. Ronnie and Doug could have been twins, except for the discrepancies in height and verbal aptitude.
I even miss the resident who, at every party, took my hand and led me around the gym. The first few times, I was afraid. He was more than twice my size and couldn’t vocalize. In my teenage years, I got annoyed when he interrupted whatever conversation I was having or plate of food I was eating to walk me around. I thought I’d be thrilled to get rid of him.
I Do, I Do, I Do
Most of all, I miss my Aunt Steph. I miss her too-tight hugs and how she shouted and danced in her wheelchair when she heard her favorite song, “Old MacDonald.” I miss how she looked at her nieces and nephew, with eyes that comforted us all, and called us “Bay-bee.” I miss the classic Aunt Stephi expression of enthusiasm, “I do, I do, I do!” She’s been gone for seven years, but the grief still creeps up on me. If I’m not careful I’ll think she’s still here, living at Melmark just past the horses, hollering “I do, I do, I do.”
Samantha Paige Rosen earned her MFA in creative nonfiction from Sarah Lawrence College. Her writing has appeared in The Washington Post, Ms. Magazine, Lumina Journal, Hypertext Magazine, and the anthology My Body, My Words: A Collection of Bodies (Big Table Publishing, 2018), among others. Say hello at samanthapaigerosen.com.