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More From The Huntsville Times Teen 'could light up room' with smile
Friday, December 09, 2005
By MARIAN ACCARDI
Times Staff Writer accardi@htimes.com
Holly Fielder was told her newborn baby, diagnosed with the rare condition called hydranencephaly, wouldn't live a year. If she did live, the child would never be responsive, doctors said, and would never recognize family members. Kirsten Fielder, who died last Friday at age 14, would prove many predictions about her to be wrong. With hydranencephaly, the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. Kirsten, who was missing all but about 10 percent of her brain mass, couldn't walk or talk, and her vision was limited, said her mother. But she could laugh and smile, and she did respond to family members, including her younger brother, Noah Bowers, now 7 years old, who would push her wheelchair, help with her feeding tube and bring her dolls to her. "She would light up when she found out her Nana (her grandmother Doris Fielder) was there," said Fielder. There were many things that delighted Kirsten, causing her to break out in a big grin or kick or laugh out loud. "She loved anything Disney and she loved classical music and Christmas music and bells," said her mother. Kirsten was attracted by the color hot pink, and her eyes would follow the bright pink animals on her battery-powered mobile. "She touched a lot of people," said Holly Fielder. "Her smile and her eyes could light up a room, and her laughter was contagious. "She made you cherish everything." "It's a humbling experience to have a special needs child in your life," said Shelly Fielder, Holly Fielder's older sister. "It makes you appreciate everything you have. Everybody around Kirsten appreciated life more." Holly Fielder was 16 years old and single when she found out she was pregnant, and she had planned to give up her baby to a couple through private adoption. After Fielder was told of her baby's disability, though, she talked with the couple and her mother, and "We decided that we should bring Kirsten home with us. We felt that she was meant to be ours." Fielder believes that Kirsten, who grew only to the size of a 6- or 7-year-old, kept her life on track. "I think she helped me keep my life together," she said. "I was a teenager, rowdy, and I think she showed me where I needed to go with my life." Kirsten was always included in the family's activities, even taking a trip to Niagara Falls, said her stepfather, Kevin Bowers. "She touched my heart like you wouldn't believe," he said. "She really matured me. She made me grow up and mature and value life." The toughest challenge over the years was dealing with Kirsten's seizures. They could last for 10 to 20 seconds if under control, or for as long as 45 minutes and put Kirsten in the hospital. Despite needing special care, Kirsten would never become a burden, her mother said. "Our life without her is going to be tough."
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