Miranda Day was born with a rare type of congenital scoliosis and a tethered spinal cord, a condition where the spine is split into two and entwined towards the tailbone. After her first surgery in her family’s home state of California, it became clear to doctors that it wouldn’t be her last. “Scoliosis isn’t life-threatening, but it can be a detriment to your well-being,” says Day. “My parents’ goal was to give me the best quality of life and not have any setbacks physically or otherwise.”
Miranda Day, Program Manager, Creative Arts Program
and her mom
Rachel Guardiani, Patient and Family Educator, Medicine Patient Services
Miranda: I’ve worked here for 12 years; first in Child Life Services and now I run the Creative Arts program. Before that, I was a patient here. I had seven surgeries; the last one was 27 years ago.
Rachel: I run the Resource Room for parents on the ninth floor. I work in collaboration with our Nursing, Social Work, Child Life and chaplains in supporting our inpatient families. We offer chair massage, hand massage and Reiki, and we also provide emergency clothing and toiletries, free coffee and pastries, computers, books, painting and crocheting.
When parents are hearing some of the worst possible news, I can feel it in my bones that they’re so scared. I really do understand what they’re going through. They don’t want to cry or be angry in front of their children so they come here where they feel like somebody is taking care of them. It’s a place of respite and emotional support. I hand out a lot of Kleenex and do a lot of hugging.
Miranda: I think Mom and I approach our jobs as who we really are. She’s a crier and a feeler — always wanting to nurture and take care of us. I’m a fighter and have never wanted to be identified as my diagnosis.
I’ve always pushed for programs that help patients express themselves as individuals with fun, creative talents, along with their diagnoses. Yes, you’re a patient but you’ve also been something else — an artist, a student, a brother, a sister — so let’s keep going with that.
Rachel: When Miranda was a patient, I always looked at it as one moment in time. And that’s how I think about all these children — today might be a bad day, but tomorrow’s going to be a great day.