The death of a child is something a parent never expects to deal with, and hopes they never will.
It can also send them into some of the darkest depths of grief. Thus the motivation for Wynn Johnson to write“An Angel Is Born: A Family’s Story.”
The book tells the story of his niece, Angel Rose Skiles of Springfield, who died in October 2011 at the age of 39 from complications from a variety of birth defects. Two years later, Johnson released the book as a tribute to her life.
“I didn’t want Angel to be just another name in a mausoleum,” said Johnson. “It’s a sort of ‘what if book.’ The theme of the book is parents losing their children before their own death. Since I have written the book, I have met so many people who have had that happen to them. The stories will break your heart.
“But it is also a success story,” he added. “Angel was a fighter and quite a character.”
Angel Skiles had Progeria, a rapid aging disease, plus other developmental disorders that prevented her from walking and talking, including Rubenstein-Taybi Syndrome.
“The fact that they were able to keep her alive and give her a quality of life that would seem impossible to some people is remarkable,” Johnson said of her parents, Bill and Lily Skiles of Springfield. “She overcame the odds to live 39½ years.”
Angel Skiles was her mother’s only child.
“She was my life,” said Lily Skiles, Wynn’s sister. “She touched many, many lives. She was a happy person, and it didn’t take much to make her happy.
“I feel honored that my brother wrote the book,” she continued. “It keeps her spirit alive because many people have read and enjoyed the book. We hope the book will help someone who is in the same situation.”
Angel Skiles presented constant care challenges for her parents.
“When she was born, the doctors told us that we were counting minutes, not hours,” Lily Skiles recalled. “She outlived the doctors expectations by a long shot. It put my life on hold, but I certainly didn’t mind. And I would do it all over again and not one regret do I have because the joy that she gave us outweighs the many hours of sleep that we lost and the many trips to the hospitals.”
The family approached it that as long she had one breath in her, there was a chance, her father Bill Skiles said.
“Lily would always tell her, ‘If you make it, I’ll make,’” he said. “There were all kinds of sicknesses that she made it through.”
With that kind of connection, grief recovery can be even more difficult.
“What I’ve learned is there are what I call ‘gears’ that just seem to lock and hold (grieving parents) back,” Johnson said. “The bad thing is they tend to want to go through the grief alone. I try to always encourage people to not go through this alone.”
Johnson knows this from personal experience.
Lily Skiles still hasn’t recovered, she said, and that it has gotten harder.
“It feels that you are on a journey that goes farther away from her and you want to turn around but can’t,” she said. “There’s even times when you are afraid you might forget something if you move on. There’s so many, many emotions that it is hard to express them.
“All I can tell parents in our situation is to hold onto God,” she continued. “That’s where your strength comes from. We give him the praise for getting to keep her as long as we did.”
Part of the struggle, Lily Skiles has found, is with her humanness.
“You’ve still got that selfish feeling that you want her to stay, and that is not always a good thing when you see a loved one suffer,” she said. “But it is just being human. I have lost a mother, brothers and a sister, and it was hard to let go, but it is nothing like (losing) your child.”
Lily Skiles hopes their struggle won’t be in vain.
“If I could be a help to anybody, I’ve always had that nature … If I could say one word to help somebody, I might do it through tears, but I’d be willing, because it is a pain like no other,” she said. “I don’t want to see anyone in that kind of pain.”
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