A Peninsula boy’s struggle for life has been highlighted in a new book by his grandmother.
Cheri Jones is hoping that “Angel Wings” will provide inspiration to others with ailing children or who lose a child, especially those who share her faith.
The story of Conner Reed Jones caught the imagination of Chinook Observer readers for all his seven years. And even those who didn’t know the family, grieved when he died in 2010.
“I could not do it for a long time, because of the pain of relieving those years,” Jones said. “Then about two-and-a-half years ago it came back to me. I wanted to write a book about Conner and our journey.”
The project took time, in part because she wanted to research accurate details, including current contact information for hospitals and other organizations that helped the family. “Once I decided to do it, the words just kind of flowed,” said Jones.
The boy’s parents are Brad and Sarah Jones. Brad, an Ilwaco High School graduate, was a volunteer with Pacific County Fire District 1 and worked at Oman and Sons; Sarah worked at the Bank of the Pacific in Long Beach.
Conner, their first child, was born 2003 with prune belly syndrome, which causes bladder problems and has serious health implications. He was a year old when doctors diagnosed cystic fibrosis, an incurable disease that affects the lungs and other bodily functions.
An ultrasound had revealed undeveloped lungs and an enlarged abdomen. He was born by C-section and spent his first nine days in Doernbecher Hospital’s Neonatal Critical/Intensive Care Unit in Portland. Jones says the family owes much to the Doernbecher staff for their caring dedication over seven years.
Conner underwent multiple surgeries and more than 20 hospitalizations, prompting his parents to move to Longview to be closer to the specialist medical care that he needed, in addition to his home-based nebulizers and other treatments to fight infections and the effects of his two ailments.
‘To persevere and to love’
The family’s Christian faith provided strength for all, including Conner, his grandmother said. “He had a heart for God and Jesus. He asked his mom and dad about going to heaven.”
His parents were candid.
“We knew that he was a miracle child, but we had no idea the journey we were about to embark on,” his father, Brad, told writer Amanda Renner for a poignant article published in the Observer four months before the boy’s death. The story quoted Sarah wanting to avoid spending her life asking, “What if?”
“I just felt like it is not my decision to play God,” she said, recalling how some doctors had advised her to terminate her pregnancy. “What if I had listened to those doctors? I would never have known what it truly means to persevere and to love someone authentically.”
The story highlighted how Conner, just like other little boys, enjoyed video games, soccer, coloring, reading and playing at the park, although his life was dogged by medical restrictions.
His parents have two healthy sons, Hunter and Bradyn, and a daughter Brynnlee, now 8, who also has cystic fibrosis. “Her care is not as extensive,” Cheri Jones said. “She is doing really well.”
Sarah has since dedicated herself to studying to become a nurse.
Grateful to colleagues
One bright element toward the end of Conner’s life was the involvement of the Make-A-Wish Foundation, which financed a six-day trip to Hawaii when its leaders learned of the boy’s desire to see humpback whales and volcanoes.
Jones, a retired administrator, was secretary to the board of District 1 Fire Commissioners and a member of the Ocean Beach School Board from 2001 to 2005. Colleagues at the Ocean Park fire station contributed greatly to helping other family members accompany Conner on his last trip, recalled a grateful Jones.
She and her husband Rick have two sons, one daughter and eight grandchildren. The Joneses moved from Ilwaco to Battle Ground four years ago to better meet their own health issues.
Wise beyond his years
The paperback book cover features a drawing of a boy with his hands clasped in prayer, bordered by red balloons from the Cystic Fibrosis Walk for a Cure, red Lego building blocks and red heart shapes. Jones recalled the first time she saw the design, “I just started crying.”
The color is significant. “Remember each time you see red, remember our little Conner who has earned his angel wings and is now free from the chains of cystic fibrosis,” Jones wrote in a wide-ranging thank-you letter in the Observer after Conner’s 2010 funeral.
Jones said the full title, “Angel Wings: Love, Love, Love, Now and Forever,” combines the name of their CF walk team with a phrase Sarah used in a blog about her experiences. The book is published by Christian Faith Publishing of Meadville, Penn., and Jones said its staff were very helpful guiding her as a first-time author.
As she finalized the details, including photos, the biggest issue was what to leave out — because Conner’s life offered so many positive memories.
“He was only here seven years, but he was wise beyond his years and taught all of us to be better people,” Jones said. “He was an amazing child. Even on his sickest days, he would make us smile.”