By Michelle Bearden, Tampa Tribune, Fla.
Jun. 12–LITHIA — Heather Duckworth is thinking pink. Yes, that’s the perfect nursery color for baby Allie Patricia, coming from Guatemala to join the family in the next few months.
Heather’s not used to pink rooms. She’s the mother of four boys. She has to catch herself when she says that. Three are with her; one’s in heaven.
“Jacob would have liked the idea of a little sister,” she says wistfully. “We talked about adoption even before he got sick. If we could have a house full of children, we would.”
A year ago today, Heather and her husband, Don, were in such a different place, far from talk of diapers and babyproofing their home in FishHawk Ranch.
They were keeping a bedside vigil at St. Joseph’s Hospital, where their 6-year-old son — the middle triplet — was slipping away. He died at 12:30 a.m., succumbing to adrenocortical carcinoma, a brutal cancer that had plagued him since February 2004.
Some parents never get past the grief of losing a child. Such devastation breaks up marriages and destroys spirits. The Duckworths, both 35, say they’re not immune to moments of despair. But their steady faith in God and determination to keep Jacob’s memory alive in positive ways have helped them cope.
The towheaded boy with aquamarine eyes smiles from framed photos throughout the house. All of them show an impish, grinning Jacob in good health. That’s deliberate, Don says.
“We want to remember him as he really was — a boy with incredible spirit and a beautiful smile. He’s the one who usually lifted us up,” he says. “We don’t need to be reminded of how he looked and felt when he was feeling poorly and going through the treatments.”
They battled the Christmas blues with a donation drive called Jacob Stocking Project, collecting more than 600 children’s books and gift cards for hospitalized kids. They got involved with the Tampa-based Pediatric Cancer Foundation, raising more than $50,000 for research at a benefit golf tournament sponsored by Dimmitt Cadillac and Don’s employer, Enterprise Rent-A-Car. And in April, Heather joined the foundation board, where she’s working with other parents on an advocacy project they hope will benefit the 40,000 children fighting cancer.
An estimated 3,000 children die of the disease each year in the United States. To Heather, that’s unacceptable.
“Everything I do, I do with him in mind,” she says. That means getting over her shyness and speaking at fundraising events. “Jacob suffered a lot in his short life. We don’t want any other child to have to go through that. So we’ll work as hard as we can to fund research and find a cure.”
Heather has a special weapon. It’s a venue with unlimited potential to deliver her message. She has Jacob’s Web site.
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Strangers all over the world felt Jacob’s death.
They were connected through the Web site his mom started through CaringBridge a few months after his diagnosis. The nonprofit organization provides space and technical support to connect patients with families and friends. Jacob’s site includes his mother’s heartfelt journal of his difficult journey.
She wrote of doctor visits, hospital stays, endless treatments and hopeful months of remission. She posted family photos, Bible verses, personal reflections.
Keyboard therapy, she called it.
Thousands responded. They wrote notes of encouragement, offered prayers and shared challenges of their own in the site’s guestbook. Even after Jacob died, the posts continued. The site had become a meeting place of hope, then grief, then healing.
The Tampa Tribune told the story of the boy known as “Amazing Jacob” last August, two months after his death. At that time, Jacob’s site had drawn a record 3.1 million visits. It’s now at 4.3 million, one of the three most-visited sites in CaringBridge’s 10-year history.
“It’s one of the wonderful things about our sites,” says spokesman Chris Moquist. “They can be used long after the health care crisis is over. People form a strong connection and give each other support in difficult times.”
It’s obvious a lot of work goes into Jacob’s site, he says. That it continues to draw viewers doesn’t surprise him at all. “It’s helping her [his mom], and it’s helping others,” Moquist says.
People urged Heather to take the best of the journal entries and guestbook comments and write a book. She wanted to do it not for profit, but for her surviving children — remaining triplets Devin and Brandon, now 7; Kyle, who’s 23 months older; and the little daughter-to-be waiting in Gautemala.
Heather is stubborn when it comes to her vision. She wants family photos, lots of them, in the book. Publishers said that would be too expensive, so she’s going to self-publish.
“First, this is for my kids,” she says. “They’ll always remember him, especially Brandon. A day doesn’t go by without him mentioning Jacob in some way. He was such a special guy, and we want to honor his legacy.”
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The way to do that, the Duckworths believe, is through raising money for pediatric cancer research.
It doesn’t get the attention or the funding it deserves because there aren’t as many patients as, say, adults with lung cancer, says Barbara Rebold, executive director of the Pediatric Cancer Foundation.
“But if your child is one of the some 13,000 new cases diagnosed a year, then it’s a big deal,” she says. “When there aren’t any treatment regimes out there for your child’s cancer because not enough research has gone into it, then it makes a big difference.”
She got to know the couple in Jacob’s final months. Even though he was quite ill toward the end, she sensed how special he was. She felt the same about his parents.
“Their faith is very real. It gives a glow about them, almost like an aura,” Rebold says. “They’ve taken the lessons they learned from this horrible experience and they’re using that knowledge to help others. They’re putting a personal face on this disease.”
Heather says she doesn’t know how a parent survives such an ordeal without faith. The family collects frogs — stuffed, plastic, whimsical pictures — as constant reminders to “Fully Rely on God.” She never downplays the pain of grief, but as a Christian, “we are able to grieve with the hope of seeing him again.”
That also sustains Don. On a recent trip to Walt Disney World, he remembers feeling perfectly happy as he watched his excited sons dashing through the theme park. Then, out of the blue, came the realization: Something’s missing. Jacob’s missing.
“We feel life has gone on for us, but it’s also gone on for him. Just in a different capacity,” he says. “We look forward to that time when we can all be together.”
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Allie Patricia should be joining the Duckworths in the next three to six months.
She’s a fat-cheeked baby with a head full of dark hair, born at 7:38 p.m. Feb. 20. That’s the day in 2004 when Jacob was diagnosed with a cancer so rare, it affects about 20 children a year in the United States.
Heather learned of the Orlando-based Celebrate Children International, a Christian adoption agency, through one of the visitors to Jacob’s Web site. So far, it has been a smooth process. But she won’t relax entirely until the baby is here, cuddled in her arms.
Heather says Allie is not a replacement for Jacob. Her triplet son will always be in her heart and on her mind.
Nearly every day since his passing, someone in the family has spotted a cardinal. Brandon believes the sightings are a sign from his brother. He’s telling them he’s doing fine and watching over them.
Reporter Michelle Bearden can be reached at (813) 259-7612 or at [email protected].
Benefits for Pediatric Cancer Foundation
LE CASINO ROYALE WHAT: a sit-down dinner and casino event WHEN: 5:30 to 10:30 p.m. Aug. 9 WHERE: Quorum Hotel, 700 N. Westshore Blvd.,Tampa HOW MUCH: $75 for nonmembers of SMPS Tampa Bay; go to www.acteva.com.
CADILLAC INVITATIONAL GOLF TOURNAMENT SPONSORED BY: Dimmitt Cadillac, in memory of Jacob Duckworth WHEN: Noon shotgun start Oct. 15 WHERE: Feather Sound Country Club, 2201 Feather Sound Drive, Clearwater HOW MUCH: TBA; for foursomes and sponsorships, call (813) 269-0955
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