Niece’s strong spirit and love of life will be greatly missed
My niece, Ashley Bennett, loved babies, sparkly clothes and animals. Her parents have a picture of her sitting with a pet tortoise the size of a manhole cover on her lap.
Ashley went camping; she innertubed on rivers; she enjoyed a party (but not the song “Happy Birthday” — that was one of her quirks).
Born with schizencephaly, a rare brain malformation. Ashley was unable to walk or talk, could eat only pureed food and had scary health crises. But her spirit was much stronger than the body that contained her.
She was born on July 26, 1993. The diagnosis came soon thereafter. When the initial shock wore off, my sister-in-law, Shannon, and her husband, Mark, launched into what I can only describe as heroic efforts to care and advocate for her.
They figured out when to accept what doctors were telling them and when to challenge it. They pushed back if they thought school authorities were charting the wrong course for Ashley's education. They redesigned their Westerville home to accommodate her needs.
And they had fun. They went on long vacations, introducing Ashley and her big brother, Tyler, to the joys of roadside attractions, antique shops, pontoon boats and national parks.
The people closest to Ashley — her parents and brother, her grandmother Patty Bennett, her nurses — were finely attuned to the subtler signs of her needs and wants.
But she could communicate in smiles, laughs and cries to anyone who took the time to get to know her. They could watch her light up at the sight of an American Girl doll, a horse or any kind of animatronic device (Disney World was heaven for her).
Ashley had quite a social circle. There was her extended family, of course; her Saturday Night Bible study class; her schoolmates and neighbors; the many nurses, therapists and others involved in her care. She liked small spaces because it meant a crowd would always be around her.
Ashley's graduation from Westerville South High School in 2013 was a memorable day. Dressed in her white cap and gown (she'd have preferred something more sparkly, I'm sure), she was wheeled across the stage to a huge ovation.
Her fragile body was always at risk, and earlier this month, she caught a cold. She already had breathing complications because of a spine curvature that compressed one of her lungs. The cold became pneumonia, and her oxygen levels began to drop. On Nov. 20, after a week of struggle in the hospital, her body couldn't fight any more.
By living to age 28, Ashley exceeded all expert projections of her lifespan. Some said she might not make it to age 3.
Surely, good medical care, her family's devotion, the prayers of all who loved her played roles in keeping her here much longer. And surely Ashley's spirit did, too.
Joe Blundo is a Dispatch columnist. joe.blundo@gmail.com @joeblundo