Almost every day of childhood, I walked up the hill from my school bus stop to see Cindy looking into the golden light, waiting for my sister, Jenna, and I to visit after school. We spent so much time together making crafts, playing games, and watching movies. Our favorite game was when Cindy would pretend to chase us home. After walking out the back door we would sneak to the front, ring the bell, and wait with bated breath until we’d all burst into a chorus of laughter when she’d find us there. Jenna was exceptionally sneaky. Since 2015, I have been documenting my grandparents and Aunt Cindy, who also happen to be my next-door neighbors. My photographs were simply a collection of family pictures trying to recreate childhood memories until 2020, which hit this family, along with many others' very hard.
Aunt Cindy lived with her parents, Mary and Clayton, my 85-year-old grandparents, "Gremmy and Pappy," for all of her life in Fleetwood, Pennsylvania. Pappy built the home and ran his small construction business in town. He never had more than two employees. After “retiring” in 2010, he spends his time working in his wood shop, renovating the house, playing on a senior citizens softball team, and building a garden. She might not admit it, but Gremmy took on a job, too: taking care of her daughter, Cindy, full time, for as long as she’d live.
Cindy was born in 1958 with physical disabilities and an intellectual disorder, which went undiagnosed even after research continued well into the 21st century. Cindy, who communicated through actions rather than words, was expected to live approximately 20 years, but instead lived a fulfilling 62-years with her family.
Left: Cindy looks out the window at me, where she always used to stand to wait for us to come home from the bus stop, January 6, 2016.
Right: Gremmy, Cindy, and Pappy stand in front of the kitchen window September 6, 2019. This was Cindy’s favorite spot to stand, and her parents often joined her.
Their lives were so flawlessly intertwined. Pappy spent most of his days in his workshop. Gremmy prided herself in baking and enjoyed reading on her quiet afternoons at home. Cindy spent her weekdays working at Prospectus Berco, a nonprofit establishment, which aids intellectually disabled people in life skills and for many, serves as their home base. Cindy spent much of her time serving Meals on Wheels, socializing with coworkers and going for walks. She eagerly awaited the arrival of the bus, which picked her up at home each morning to go to work, until late February, 2020, when she started getting sick and had to stay home.
Left: Gremmy zips Cindy’s jacket shortly before going to work April 30, 2019.
Right: Cindy stands next to the TV, where her favorite show, "All in the Family", plays March 17, 2020. Prospectus Berco had closed its doors due the pandemic, but Cindy hadn’t been at work in a few weeks prior due to feeling ill.
Meanwhile, COVID-19 was spreading rapidly and public health policy was changing daily in the United States. On March 16, 2020, non-essential workplaces, schools, and businesses were shut down by Pennsylvania’s Governor Tom Wolf, which included Prospectus Berco. Elderly people and those with pre-existing health conditions were said to be at most risk of contracting the often fatal disease, and everyone was urged to stay home.
Left: Gremmy stands for a portrait in her dining room window March 20, 2020. She would not allow guests in the house anymore.
Right: Cindy sits in front of the TV, which plays news about new COVID-19 restrictions in Pennsylvania, March 20, 2020.
Gremmy and Pappy were worried, and tried to follow COVID-19 protocol by staying inside without guests, but they were left without a choice as Cindy’s condition worsened. Her family doctor had previously prescribed antibiotics three times between February and March and to no avail before they were able to get an appointment with a digestive disease specialist in April who advised them to come back when the pandemic slowed. In May, Gremmy fought to get to the digestive specialist one more time. This time, 3 months into Cindy’s visible illness, she was diagnosed with metastatic colon cancer.
Left: Cindy smiles as she looks out the window at the sunset, March 8, 2020.
Right: Cindy sits in her wheelchair, unable to walk and uninterested in watching TV, eating meals, or socializing like before July 8, 2020.
Surgery, tests, doctors appointments and test results, cast a grim shadow over a house I've only known to be flooded with light. Gremmy and Pappy decided not to put Cindy through chemo for what would only be considered palliative care. They were tasked with more hands-on full time care than ever before, and it was clear they were strained physically and emotionally.
Just a year after suffering a brain bleed, Pappy was now doing the heavy lifting to care for his daughter. Three or four times a day he lifted Cindy out of her in-home hospital bed for baths or meals. When a home health aid arrived to help in August, he appeared reluctant to accept assistance. Pappy, weak from months of intense physical labor, and Gremmy, weary someone could tear away everything she knew of motherhood, trusted no one other than themselves and their family to care for their daughter.
Left: Cindy visits Clayton after he suffered a brain bleed from falling off of a ladder in his wood shop June 30, 2019.
Right: Cindy sits in her wheelchair at the breakfast table, July 1, 2020.
My grandparents were forced, not only to accept help caring for their daughter, but also to visit many doctors and allow people into their homes despite the COVID-19 pandemic. They tried to limit in-home care to family members, but also received help via a home healthcare worker sent through Cindy’s disability waiver. Other visitors included hospice workers, visiting nurses, physical and occupational therapists, and social workers.
Left: The Reeds eat dinner together August 1, 2019. Cindy always loved meals with her family, especially ice cream cake on birthdays.
Right: Cindy sits in her wheelchair at the breakfast table, August 8, 2020. At this point, Cindy was having trouble stomaching any food.
In a time when most of the world was lonely, my grandparents were not afforded alone time. It was a matter of choosing between their daughter’s physical comfort when dealing with cancer or their safety and social distancing to stay safe from the virus.
Left: The Reeds prepare to play a card game March 8, 2020.
Right: The Reeds help Cindy sit stably in her wheelchair, July 8, 2020.
Cindy died on August 29, 2020, less than 24 hours after 5 of her cousins came to visit her. They gathered knowing they might not see her again, for reasons other than the pandemic.
Left: A photograph of Cindy, which was on display at her funeral, sits in the dining room surrounded by flowers from friends on the table in the Reeds’ kitchen September 14, 2020.
Right: Flowers sit on the table, which had been previously covered by medical records and information about how to take care of Cindy, September 14, 2020.
The remainder of 2020 has been, by definition, more COVID-19 conscious than the first 8-months of the year had been for the family. There are no longer appointments, healthcare workers or family members inside their home. 2020 has already placed an empty chair at the dinner table, so Gremmy and Pappy are incredibly worried about exposure to the virus. They do not allow visitors and do not go out for anything other than necessities, which is difficult for the grieving process. Pappy once again spends most of his time working in the garden or in his wood shop.
Left: Cindy sits next to her dad at the kitchen table shortly before he and Gremmy play a card game, March 8, 2020.
Right: Pappy stands in the kitchen reflected in the same mirror, which is next to flowers he bought for he and Gremmy’s 65th wedding anniversary, November 7, 2020.
Mary now spends her time in quarantine taking walks alone, reading, and baking, and watching shows Netflix. She enjoys doing puzzles and watching soap operas on cable tv with Pappy in the evenings.
Left: Cindy and Mary go for a walk around their neighborhood, June 14, 2019.
Right: Mary stands outside her door before going for a walk, October 8, 2020.
It was insightful to be witness to so many moments my grandparents and Cindy shared, some of which they didn’t even realize were special. But I got a new perspective in 2020, when I put my camera down and spent much more time helping with the heavy lifting to care for Cindy.
It goes without saying that my Gremmy and Pappy are two of the strongest people I know, and that they did the best job in the world taking care of their daughter, but when I got a little closer, I earned a new appreciation for photos of the last five years. I have evidence of what Cindy gave to this world, both through those she has touched and those who have touched her.
Left: Mary and Clayton stand in the sunset March 8, 2020.
Right: The sun sets on the Reeds’ house in a window near the one Cindy always looked out of, November 12, 2020.