Posted on Tue, Aug. 03, 2004
Ronnie Polaneczky | High praise is due these special parents
THIS ONE is for the parents of Alexandra Scott, Emily McDougall and Caela Farmer.
Each of their little girls entered this world medically doomed, and defied all but the final odds of devastating illnesses.
You've read a lot about Alex. She's the 8-year-old Wynnewood child who became famous for selling lemonade to fund pediatric-cancer research.
By the time she died of neuroblastoma on Sunday - at home, while holding the hands of her parents - she had inspired lemonade sales that raised over $700,000 for the cause.
But I want to talk about her mom and dad, Jay and Liz Scott. And about Kelly McDougall, mother of 7-year-old Emily, who died on June 23.
And Mari-Carmen and Tatum Farmer, parents of Caela, 3, who died on July 12.
It's been an awful few weeks for them.
These families, whom I've written about before, will say it was their daughters' fierce spirits that allowed each to survive far longer than doctors predicted.
But I say it's the parents themselves who deserve the credit.
It's not just that they fought for the best care for their kids, as any decent parent would.
It's that they seemed to accept with grace their children's illnesses as part of the total package of who their children were.
As one therapist remarked to me last year about the Farmers, whose daughter's Rett Syndrome kept her from walking, standing or speaking:
"Some families with disabled children are very specific about the gains they want their child to make. They say, 'I want my child to walk, talk, ask for juice.'
"The Farmers say, 'We want Caela to be part of our lives, on her own terms...we will do whatever it takes for that to happen.' "
In that kind of environment, is it any wonder that these girls survived as long as they did?
Wonderful families are not rare. Every day in this city, parents of desperately sick kids find ways to keep on keeping on as their children suffer setbacks, make unexpected recoveries, then flounder again as illness throws their lives in upheaval, often for years.
They even manage to find joy in their situations, which astonishes Helen Reese.
"Their physical and emotional resilience amazes me," says Reese, a social worker at Ronald McDonald House in West Philly.
"They find ways to keep accepting, while still hoping. They get into a rhythm of, 'OK, what do we have to do next?' They sometimes lose their jobs or homes. Their attitude is, 'It takes what it takes.' "
Kelly McDougall knew exactly what she was in for when, in 1998, she became a foster mother to Emily, then a deaf 1-year-old with severe cerebral palsy.
"She couldn't keep weight on, and she was having the hardest time breathing," says McDougall, an ICU nurse at CHOP who eventually adopted Emily.
"I was told no one would ever adopt a child like her, but she was such a dear. I wasn't afraid."
McDougall spent six years joyfully being mom to Emily, who never developed mentally beyond six months of age, as medical complications weakened her heart and lungs irreparably.
Five weeks ago, Emily died, at home, her mom at her side.
"I never thought she'd die this soon, you know?" says McDougall, who figured she'd care for Emily at least into the child's adolescence.
"It's still such a shock. At her funeral, people told me she was lucky to have had me. But I was the lucky one. Her smile could make all my troubles disappear."
Three-year-old Caela Farmer's giggle was delightful to her parents, as delightful as were the first steps and funny jokes of their two, older, Caela-crazy children. Caela giggled whenever someone sneezed. And the family would "go crazy with joy."
Even death couldn't change the family's acceptance of who Caela continued to be to them.
When Caela died last month, following a heart attack, this is what her parents wrote on the Web site they'd created to update friends on her condition:
"On July 12th at 12:49 a.m. Caela passed. On July 12th 12:49:01 we are still her parents."
Liz and Jay Scott no doubt feel the same way today, as they make funeral plans for Alex, who is survived by three brothers and millions of admirers who saw her on "Oprah" and who read her story in hundreds of papers around the globe.
Her fans will have words of praise for the pint-sized warrior, whose urge to help others kept her going far longer than her illness should've allowed.
But my words of praise today are for her parents, who helped her indulge that urge.
And my admiration is for all the parents like them, who meet their children's illnesses with acceptance.
But also with endless hope.