She underwent a heart operation at the age of four, so Lily Senior knows the meaning of courage. Now 13, she is helping other children conquer their fears by sharing her story of bravery in a book that’s all heart.
Titled Grace’s Hospital Journey, the book is based on Lily’s experience at Sunninghill Hospital almost 10 years ago.
“I suffered from an atrial defect, which basically means I had a hole in my heart,” Lily told the SA Jewish Report recently. “I had a narrowed artery as well, and the doctors took skin from around my heart and put it over the hole.
“In the first few years of school, I didn’t think about it at all. When I got to Grade 6, I started becoming more aware of it, and realised how grateful I was that I could have a normal life.”
Although not an emergency, the procedure prevented future complications, said her mother, Regi.
“The doctor said that when she became a young adult, she would have possible heart complications,” she says. “It was suggested that the sooner we did it, the sooner we could prevent issues later in her life.
“Like any parents, my husband and I were fearful of what open-heart surgery meant for our little girl, but the doctor explained that Lily’s was a simple case in comparison to others.”
This became especially clear after the operation. While Lily’s recovery was straightforward, a fellow patient called Tiffany, a girl a little younger than Lily, passed away almost a year after the two met at the hospital. The book was conceived in Tiffany’s memory.
“We were sitting at the dinner table on the anniversary of Tiffany’s passing last year, and Lily announced that she was going to write a book and dedicate it to Tiffany,” Regi said. “She wanted to tell children about her experience and inspire them not to be scared of the unknown.
“In September, I sat down with my dad and we wrote down some ideas about the things I could incorporate into the book. I started writing the book itself a little later,” Lily said.
“It was interesting to relive the memories. It did take some time for me to get into the process and actually write it. I went online and found an illustrator, Peet Nieuwenhuizen, at Creature of Habit, and I emailed him.
“We started chatting, he gave me some ideas, and I guided him through what I wanted to do. He sent me a final product, we made some changes, and we created the book. It was amazing.”
The book was completed in November, and trademarked soon thereafter.
“It was truly a dream come true to see it printed,” said Lily. “I was overwhelmed to see the end result. It was really the best feeling I could have imagined.
“My husband and I cried when we saw it,” said Regi. “Lily really came up with an unbelievable idea. In the story, Grace wakes up after a scary operation and sees the scar on her chest, her badge of honour for her bravery. This was what Lily had.”
The narrative captures Lily’s experience, but makes it accessible to children.
“The doctors like to get you up and walking after the operation, and I remember seeing Lily and Tiffany with their IV drips attached walking through the hospital,” she said. “They roamed the corridor, and I followed behind them with Tiffany’s mom.”
“Lily created the idea of her and Tiffany being glitter girls and going for rides in wheelchairs down the corridors. She took a scary moment, and wrote about it in a way that other children could relate to.”
Although the book hasn’t been published, a Cape Town-based printer has produced 150 copies so far. The Seniors hoped to deliver copies to children in the wards at Sunninghill Hospital, but COVID-19 complications prevented them from delivering them in person.
“The idea was to give books to children in the wards going through the same experience,” said Regi. “Unfortunately, we couldn’t do that, so we gave some copies to Lily’s cardiologist, Dr Jeff Harrisberg, who thought it was absolutely incredible.”
A copy was also given to Tiffany’s family, as well as other family members, friends, and some schools.
“Tiffany’s parents were very grateful to know we were thinking of them,” said Lily. “I’ve had so many supportive responses so far. It’s been a dream come true.
“I never would have thought I would write a book. If my parents had asked me this a few years ago, I would have thought they were mad. Now that I’ve done it, I’ve seen how much I can take from it and give to others.”
Lily hopes that other children will draw inspiration from her experience, bravely facing whatever procedure they may have to undergo in a hospital.
“You mustn’t be scared,” she concludes. “I want other kids to feel they can do anything. Whatever the surgery or procedure, they must feel positive, hopeful, and grateful that they can get it. You can conquer your fears.”
- Copies of Grace’s Hospital Journey are available for purchase from Regi Senior, who can be contacted at 082 852 3485. The proceeds will go towards helping other children in need of heart surgery.
