Editor's note: This story is published in memory of Shirley Grayson at her mother's request. It was written just before Shirley died on September 8, 2003. Speech-language pathologist Robyn Landau, who usually talked with Shirley daily in recent years, remembered her fondly. "Shirley was a vivacious person who enjoyed everything. She enjoyed the little things, the things that we take for granted." Landau said. "To Shirley, having a cup of coffee with her milk and her sugar was the best thing in life." *********************************************** Shirley Grayson knows all about loss. For her, the pleasures of living the normal and carefree life of a pre-teenager came to an abrupt halt when she was diagnosed with sickle cell anemia before her twelfth birthday. But now, more than three decades later, Shirley, 45, continues to find the courage she needs to cope with the waves of intense muscle pain and weakness that accompany sickle cell anemia, and the effects of a series of strokes that she suffered because of the disease. Though the illness has significantly compromised Shirley's ability to move her limbs, learn, and speak, she hasn't lost the determined and vibrant spirit that in recent years has propelled her into a busy social life and a stream of accomplishments. Shirley has discovered new ways to say what's on her mind and a love of painting. Her artistic talent brings many opportunities her way. Life is good for Shirley these days, but it isn't always easy. "She's aware of the fact that it's tough for her," said Cindy Cohen, the speech-language pathologist at the Bayside Queens site of New York's Shield Institute who recommended the DynaVox 3100 that allows Shirley to communicate. "She gets frustrated with the fact that things take her longer, but she persists." Shirley has been attending the institute's day program for adults with developmental disabilities since the early 1990s. Before that, she didn't leave home much. A cousin carried Shirley to different floors because there were no ramps for her wheelchair. Pointing to her mouth was her way of letting people know that she was hungry. Worn down by frequent spells of illness, Shirley rarely expressed interest in going places. Shirley's mild mental retardation posed additional complications. Her family wasn't aware of options that would restore her freedom to enjoy life. "It's irritating when you don't know what to do," said Shirley's mother, Martha Grayson. Shirley needed something more than the summer camp for adults with disabilities that she occasionally attended, her mother said. Martha Grayson was approaching her golden years, and wanted her daughter to learn independence and create a life of her own. The Shield Institute, which Martha Grayson learned of through the summer camp, proved to be the ticket.¯ Using a local transportation service for individuals with special needs, Shirley commutes daily to Shield from her new home in Astoria, New York (complete with an entry ramp) that she shares with her mother and sister. It was at the Shield's Augmentative Communication and Technology Center that Shirley found a voice of her own. After five years of using a manual communication board and a more primitive communication device, Cohen advised that Shirley switch to the DynaVox so that she could build her vocabulary and construct novel messages. "It was a learning process for the two of us," said Cohen, who figures that she's programmed at least 50 30-button pages for Shirley's device. "She and I have had huge conversations. She'll tell you a whole story, but she might have to take little rests in between." Robyn Landau, another speech-language pathologist who works with Shirley at the Shield, admires the way Shirley takes control when it comes to communication. Landau said Shirley asks her to add new vocabulary or rearrange the layout of buttons on the DynaVox at least once a week. It's not unusual for Shirley to mention the device and her plants in the same sentence, affectionately referring to them both as her "babies." Also high on the list of Shirley's favorite conversation topics is her artwork. Through the Shield's art therapy program, Shirley found that she has a gift for painting pictures. The State of New York Exceptional Artworks program has featured Shirley's work in several of the gallery exhibitions that it organizes. Shirley has sold some of her pieces as well. Hard-working yet fun to be around, Shirley likes to play matchmaker for the single people she knows, converses easily with the center's soap opera group and relishes dinners out with the girls. "She's one of the most pleasant people I know. She's very easy to talk to as you would a friend," Cohen said. Martha Grayson said that when her daughter beams when she gets word of an outing with friends she has made at the institute, especially when dancing is involved. "When they get dressed up, that's even better," said Mrs. Grayson, who likes to say that the Shirley's ten-plus years with Shield institute have been a pleasure trip for her, too. "The things that she is doing now and the improvements she has made have helped me as much as they help Shirley."