I had the pleasure of hearing the life story of Elaine (Lainey) Howard directly from her sister Verna Murphy (shown in the attached link with Elaine at the Williams Syndrome Association National Convention in 2006); Verna is Elaine’s guardian and was her full-time caregiver until illness led to Lainey’s placement in a group home. Elaine is currently the oldest known individual with Williams Syndrome, a rare genetic disorder that results in physical and intellectual disability; in August of 2013, she turned 90 years old. In 2006, she was an honored guest at the Williams Syndrome Association Convention, a living example that it was possible for individuals with WS to have a long and satisfying life. Lainey had only recently been diagnosed with WS. Her niece, Charlene, had been working with a little boy who had been diagnosed with Williams Syndrome, and she remarked that, “This sounds like Aunt Lainey.” Verna remembers that she immediately looked up Williams Syndrome on-line, and spent hours reading the information she found; as Verna explained during one of our conversations, “It was a relief. There was a reason why she was the way she was.” The diagnosis was confirmed via genetic testing when Elaine was 83 years old.
Williams Syndrome is present from birth, but the family had no reason to suspect that there was anything amiss with their daughter. Elaine was already 11 years old when Verna was born, but Verna recalls conversations and stories from older family members. Although their oldest brother Charlie noted that Lainey was always different from the other children because she learned so much more slowly, their mother believed that Lainey’s disability was due to a horrific accident she suffered at age 10.
Elaine and two of the other children were walking home from school when a passing truck overtook them on the road. The other children were able to scramble up the embankment on the road, out of harm’s way, but Elaine was struck by a strapping pole on the back of the truck; her nose, cheekbone, and eye socket were broken and her eye ball was dislodged. Lainey recovered from her injuries.
Elaine did attend school when she was young, learning some basic academic skills (including writing), but at the end of fourth grade, around the time of her injury, it was decided that she was no longer able to keep up with the other children in school and she spent her days at home. Verna does wonder what would have happened if her sister had had more educational opportunities: “If they had programs then like they have now, Lainey’s life would have been completely different. She was so sheltered and she wanted to be independent,” Verna said.
The Howard family lived in South Glens Falls, New York, when Elaine was born on August 6, 1923. The family later moved to the town of Argyle, NY. Eventually, there were seven Howard siblings- Charlie, Floyd (who died as a baby), Shirley, Elaine, Dwayne, Doris, and Verna. Their father worked for a farmer, so Elaine spent much of her childhood living on a farm. Like the rest of the family, Elaine had chores around the house. She was able to do some simple food preparation (baking popovers or making pudding), wash the dinner potatoes, keep the kitchen fire going, bring up the cows, feed the chickens and wash the dishes.
Verna remembers Elaine’s questionable skill in dish washing. “My brother never ate a meal without checking his plate first,” she laughed. Nevertheless, Verna earned herself a spanking from her oldest brother one day when she sent the same dishes through Lainey’s pile to be re-washed, wondering how many times it would take her to notice!
Lainey also cared for her nieces and nephews as they came along, often, according to Verna “rocking them all day long!” She relaxed by listening to soap operas on the radio, picking out songs by ear on the piano, whistling, and singing (quite common among individuals with Williams Syndrome).
I asked Verna if her parents or older siblings had ever talked about the difficulty of having a disabled child when so few services and supports existed, and Verna replied, “You didn’t think about it; you just existed.” She remembered that her mother was the sort of person that accepted life as it came and made the best of everything.
Even a potentially shattering crisis was handled within the family with all of the grace and dignity they could muster. Elaine was exceptionally affectionate. Verna remembered that this developed into “boy crazy” as she got older, and she used to like to spend time with the men who worked the farm. The family often feared for her safety. And then their fears were realized. When Lainey was 18 years old, an older man boarding at the family home raped her. She became pregnant from the assault.
She was sent to a boarding home for unwed mothers for the end of her pregnancy and the birth of her child, a healthy baby girl she named Martha Elaine. Nicknamed Marty or “Midge” (because she was so small), the little girl was raised by Elaine and Verna’s parents as their younger sister.
“Everyone around, even the school kids, knew the truth about Midge, but we were not allowed to talk about it,” Verna recalled. Their mother told Lainey that if she ever told the truth about Midge’s birth, she would be sent away forever. There was tension between Midge and Elaine growing up, not because of of how Midge had been born, but the ordinary tension of a younger sibling resenting a disabled sibling because she got extra attention. It was not until about seven years ago that Midge sat down with Elaine and had a poignant conversations about her birth.
“Do you ever think of me as your daughter?” Midge asked.
“Every day,” Elaine replied. The secret was now in the open, a relief for everyone in the family.
Lainey lived with her mother, eventually relocating to Florida, until her mother’s death in February of 1981. Mrs. Howard, perhaps out of an abundance of caution, had asked three of Elaine’s siblings to become her guardian after she died. Fortunately, Lainey’s life-long friend, Pearl Taylor, helped facilitate an agreement about where Lainey would live. She lived with Midge and her family for about a year and a half, but the situation was stressful. Verna then stepped up, offering to take Elaine for a few months to ease the pressure. Verna has been Lainey’s caretaker and guardian since November 1, 1982
Although Verna was still working at the time, Lainey was able to stay alone at home. Then, Verna found an adult day program for her sister. Elaine loved the program and stayed in it for 26 years. Lainey still attends a day program a few days a week for socialization (“She’s always been a couch potato,” Verna recalls), but she is becoming increasingly frail. Lainey has been free of the heart problems that individuals with WS often suffer from, although she has had many digestive problems over the years, some that have brought her close to death. So, it seemed fitting to mark her 90th birthday with a big celebration with family and friends, and a pile of cards from admirers (including me, which is how I met the family). Lainey started “advertising” her birthday months in advance and inviting people to join the celebration.
This is not a story of sunshine and roses – the family has experienced ill health, stress, divorce, and tragedy- but a story of an ordinary family doing the best they could for a vulnerable family member. Elaine is part of the fabric of that family. She has brought a tremendous amount of hope to parents of kids with WS, proving that it is possible to live a long, satisfying, and connected life. Thank you, Lainey.