This phrase, now part of hundreds of clients’ daily mantra, has long been Shauna Bates’s response to the hardships life has thrown her. After losing her only daughter to a rare disease, Shauna became a life coach based in Northern Ireland and discovered her reason. She reaches thousands of people through social media and zoom, to help others through and past the most challenging times.
“I get amazing results with clients,” Shauna said. “Helping people move from just coping and surviving, to living and thriving. And I feel like a huge part of it is Rhiannon’s Legacy.”
Before Rhiannon came into her life, Shauna was a social worker in Derry, Ireland. In 2000 her daughter Rhiannon was born, beautiful and healthy. Everything was well until Rhiannon was two and a half, three years old–something was not right. Shauna is a trained social worker, so she acutely understands child development and cognition and could tell something was off. They took Rhiannon to the doctors, who did not take her seriously. Then on New Year’s Day, 2004, her suspicions, unfortunately, were correct.
“She was actually in the bath, I was in the bathroom with her putting makeup on in the mirror, she was literally two feet behind me,” Bates said. “And I turn around, and she was face down in the water; she had a seizure.”
Shauna performed CPR and brought Rhiannon back. She said from that point on, she knew their lives were going to change forever. They rushed her to the local hospital, and finally, the doctors were paying more attention, but no one knew what was wrong. Test after test, whatever was going on inside Rhiannon was getting worse.
Rhiannon was four years old when her parents were told she likely had a disability. That’s when Shauna’s mindset began to change, and her saying “Don’t Cope, Live” began.
“That’s fine,” we said, “she may have a disability, but that disability will never have her,” Shauna said. “This is when our mindset first came into play, since that first seizure, to address it all.”
By the time she was five and a half, Rhiannon looked like a child with Parkinson’s. She had a tremor and walked with what Shauna said was a funny gait. At this time, Rhiannon’s speech was slowing down. She wore a helmet because she suffered up to 150 seizures a day. Shauna said she would fall over like a tree being cut down.
“But she was so brave. Rhiannon would just get back up and get back on with it,” Shauna said. “Nothing ever, ever held her back or stopped her.”
Without any answers, Shauna asked doctors to send Rhiannon to Great Ormond Street Hospital in London, one of the world’s top children’s hospitals. The experts there came back with a diagnosis in ten days–Rhiannon was suffering from an immensely rare neurodegenerative disease called Late Infantile Batten Disease.
Rhiannon was six and a half when she received a prognosis that her life expectancy was between seven and seven and a half years old. According to experts, she had up to a year to live.
“That was the worst thing we could have been told,” Shauna said. “But even then, our mindset was different. We couldn’t change the fact that she was going to die; no child has ever survived. But we could change the way she was going to live.”
Rhiannon and her family were as determined as ever. If Rhiannon wanted to do something or get somewhere, she went for it–no other way about it. Doctors told her she couldn’t ride a bike; the next day, they bought one, and Rhiannon rode it, Shauna said. Their mindset got them so far, and Shauna still uses this mindset to help clients who feel like they have no control over the outcome of their lives. She tells them they can decide how they respond to the outcome.
“When most children are told they’ve got six months or twelve months, they go home and roll up in bubble wrap,” Shauna said. “But we decided we were going to tour the world because our attitude was just different.”
They traveled all over Europe, Belgium, Germany, the Netherlands, Luxembourg. Collecting medical equipment to care for Rhiannon’s degenerative condition as they went, they didn’t stop. They went to Disney world and the Americas. By the time Rhiannon was eight and a half, Rhiannon had been to Disney world twice. By the time Rhiannon was nine, she was in a wheelchair, basically blind, and couldn’t even lift her head, but she was still there.
“She was still showing the world how she controlled her fight,” Shauna said. “She had a twitch, constantly unless she was asleep. Whenever she was taken into school and didn’t want to be there, she would close her eyes and pretend to be asleep, but her twitch would give her away.”
When Rhiannon was very dependent, people would ask them all the time how they coped with this, and Shauna would look at her husband and ask, “Are they talking to us?”
“We had climbed mountains with a child in a wheelchair. We toured the world, held a prom for her 13th birthday,” Shauna said. “We would turn and look at the person and say, ‘we’re not coping, we’re living.'”
After the age of ten, Rhiannon had not gotten any worse. A community pediatrician visited their home and kept Rhiannon out of the hospital for six years, where most children with Battens had to visit at least twice a year. Rhiannon started to get worse at the end of 2013. On New Years’ eve, with failing lungs, she was admitted into the hospital, and on January 8th, 2014, Rhiannon passed away.
“We were ok with that. It was crazy because everyone around us was falling apart; my family was crying,” Shauna said.” But we were ok because we knew Rhiannon was ok.”
Shauna learned that her mindset had given her the strength to get through even the worst parts of life. She said that, “Yeah, there are going to be times in your life you can not control, but you can always control how you respond to those situations.”
Shauna went back to work, having to take a break for the last years of Rhiannon’s life. She loved her career as a social worker but realized she had more to do in this life. She began her life coaching business, helping people by teaching them to react to insurmountable odds by deciding to keep moving forward.
She said she got some of her disposition from her family on her father’s side. Even laying on your deathbed, her family would keep things happy and joke in a light Irish accent, “Awe, what are you complainin’ about?”
Through online workshops and person to person coaching, Shauna spreads her positive energy that she says has become even more critical due to the pandemic. You can reach her on her Instagram, her Facebook page, or through LinkedIn.
“I want to spread this message, and I don’t just want to spread it here in Ireland,” Shauna said. ‘Every day, more and more people are diagnosed with a horrific disease, having accidents, seeing their marriage of 30 years ending, or having their jobs made redundant. This is not just about health. In all the life-changing situations they need someone to come in and say, I’ve been through all this crap, and I get it.'”
Written by Kevin Travers