It didn’t take long after Johanna was born for her mother’s nightmares to begin.
Night after night, Eileen Benthal revisited the same dark, ocean waters. The dream was always the same: there was no land around her, no bottom beneath her. Clutching her infant daughter in her arms, she struggled to keep them both afloat.
“It was frightening,” said Benthal. “It haunted me.”
Three months later, Johanna had her first brain surgery.
“The first time she got a CT scan, I realized that her brain was literally drowning in fluid,” said Benthal. “That nightmare was preparing me for what would happen.”
Johanna has been back in the operating room at least a hundred times since that first surgery 18 years ago. Her disease is so rare that doctors didn’t even have a name for it until several years later: CCM3, a genetic neurological disorder that causes brain hemorrhaging and seizures. There is currently no cure.
Benthal’s new book, “Breathing Underwater,” describes her family’s journey as they have guided their youngest daughter through the unimaginable challenges of dealing with a disease so rare that less than 100 people worldwide have been diagnosed with it.
“When people are talking to someone who deals with chronic difficulties, they usually say, ‘Just try to keep your head above water,’” said Benthal. “But I’ve realized the reality is that sometimes, that’s just not possible.”
This realization, Benthal says, came in the form of another dream. Her nightmares continued through the years, serving as a “warning” whenever Johanna was about to go through a particularly difficult time. But when Johanna was 8 years old, the dream changed.
“As we felt the ocean’s waters rising over our heads, we felt like we were drowning,” Benthal said. “But I heard God’s voice speaking to me. He said we weren’t drowning, that we simply needed to let go and that he would teach us a new way of breathing. He would teach us how to breathe underwater.”
It was then that Benthal first had the idea for the book that she would write almost a decade later. She believes others can learn from the way her family has adapted to the constant stress of caring for a child with such a unique and devastating disease – a lesson that can be applied to anyone who has ever had to deal with chronic stress.
“The difficulties are overwhelming,” Benthal said. “They just never stop. You have to learn a new way of living.
“One person might feel like they’re drowning and that they can’t breathe. But another person sees how to change something to breathe, even with all the water around them.”
On her birthday last December, Benthal decided that 2014 would be the year she would finally write her daughter’s story. And by a stroke of uncanny coincidence, it was on her birthday this year, December 19, that the first copy of her finished book arrived in the mail.
A book signing and reception will be held at Love Lane Kitchen in Mattituck on January 6 at 7 p.m.
Top photo caption: Eileen and Johanna sign Eileen’s new book. (Courtesy photo)
Support local journalism.
Now more than ever, the survival of quality local journalism depends on your support. Our community faces unprecedented economic disruption, and the future of many small businesses are under threat, including our own. It takes time and resources to provide this service. We are a small family-owned operation, and we will do everything in our power to keep it going. But today more than ever before, we will depend on your support to continue. Support RiverheadLOCAL today. You rely on us to stay informed and we depend on you to make our work possible.