Shawn Norman spent much of his life dealing with hospitals and doctors. When he was a child, he was diagnosed with Noonan Syndrome, a genetic disease related to the heart. It’s a disease with a wide range of symptoms and is not very well known. At this time, there is no known cure and only limited treatments available.
“It can make you tired. It can make you weak. It can make you face death,” Shawn said.
Being a big Star Wars fan, Shawn wanted to experience the new movie, Star Wars: The Force Awakens, released last December, in a movie theater with surround sound and a big screen. His hospital care team set that as his discharge goal, writing it on his board, where he could always see it.
“Every time he would feel down, we would point at the board, go, ‘Hey, we’ve got a couple more days. We're getting close,’” Tom Norman, Shawn's father, said.
With the support and encouragement of his family and care team, Shawn was discharged from UnityPoint Health – Iowa Methodist Medical Center into hospice care with UnityPoint Hospice and was able to accomplish his wish. The seamless transition was the result of his teams working together to own the moment, providing enthusiasm, accountability and compassion.
“Hospice care is built upon providing comfort and compassion to benefit the patient and family for the maximum amount of time,” Mary Horstman, R.N., UnityPoint Hospice nurse, said. “We provide the necessary support to allow the family to simply focus on their time together.”
A paramedic team transported Shawn by ambulance to a local movie theater for a private screening with about 30 friends and family members. The medics helped get his hospital bed comfortably adjusted in the aisle, so he had the best spot to watch the movie. Horstman was by his side to monitor his condition and provide care. Shawn was thrilled to be able to experience Star Wars the way he wanted to.
But, Shawn wasn’t quite done with his bucket list. Under hospice care, he was able to reach another milestone, celebrating his 29th birthday in the spring. Friends and family came to support him and help him mark his special day. Fittingly, he had a Star Wars theme, with guests wearing t-shirts with “Shawn’s Force” on them.
“We believe living your life on your terms is just as important at the end of life. It means knowing what’s important to the patients and families that we serve, understanding their goals and respecting their wishes. Shawn was a strong, young man, and he was able to make many memories in his remaining time,” Horstman said.
On June 10, 2016, Shawn passed away peacefully at his home, with both of his parents by his side. He donated his body to Des Moines University in gratitude to his doctors and medical teams and toward research and education for his disease. His family is thankful for the care his UnityPoint Hospice team provided and that Shawn was able to be at home for nearly six months.
Learn more about UnityPoint Hospiceservices available in your area.