by James A. Bacon
B.K. Fulton, a senior Verizon Virginia executive, grew up in Hampton with his younger sister Shauna. As a baby, Shauna seemed normal. She developed like any other child. Then, around two years old, she began regressing. She lost the ability to walk. Her verbal skills disappeared. No doctor could tell her family what was wrong until she reached the age of 12, when she was diagnosed with Rett Syndrome, a developmental disorder that afflicts about one in 10,000 to 15,000 girls globally.
As a boy, Fulton was called upon to help take care of his disabled sister. He helped feed her, watch after her, understand her efforts to communicate, and anticipate her needs. “I had to come home after school and help my sister,” he told a small gathering at bbgb bookstore in Carytown last night. Some kids might have been resentful of the obligation. But Fulton responded positively. “Shauna’s life was a blessing. Caring for her and showing her love helped me be a better man.”
Fulton retains keen memories of one day when a bunch of kids in the neighborhood asked him to come out and play. He said he would, but only if he could bring his sister with him — and if everyone helped take care of her. And that’s what they did. It was a liberating experience, and it inspired Fulton at age 16 to write a poem about it. Today, more than three decades later, the memories are still vivid. The poem about that special day became the inspiration for a just-published children’s book, “Shauna.”
The number of people diagnosed with Rett Syndrome runs in the hundreds, but he wrote the book for a broader audience, Fulton said. Thousands, if not millions, of people are called upon to become caretakers of people with disabilities. His message to them is to view the experience not as a duty or obligation but as a blessing. Experience the love. Grow from the experience.
One of the things Shauna taught him was to be attentive to the needs of others. Learning to listen and read the signals made him a better person– and a better businessman. “That skill — knowing how to listen — has benefited me in my career,” he said.
The reaction to the book by care givers has been overwhelmingly positive, Fulton said. “It helps them think differently, to appreciate what they have. … We need to enjoy every minute of every day.”
Shauna, now 42, still lives with her parents in Hampton, and she’s still a big part of Fulton’s life.There are currently no comments highlighted.