I don’t share this story often. But, it has been on my mind lately and a message exchange with a friend this evening made me think it’s time to share it in writing. This is the streamlined version.
In the fall of 1991, my 18-month-old daughter began to tilt her head a little to one side after a long car trip. At first it looked like muscle stiffness from the ride, but a few weeks later she started having difficulty maintaining her balance and then she stopped walking.
Her regular pediatrician didn’t seem too concerned, but her mother and I knew something was wrong. Our next stop was an orthopedic surgeon and although he didn’t find any muscular or skeletal abnormalities, he agreed that something was going on. He recommended a second opinion from different pediatrician, one whom within moments of seeing her saw pressure within her eyes and admitted her to the hospital for an MRI.
A neurologist confirmed our fear a few hours later—a golf-ball-sized tumor in the right ventricle of her brain. A neurosurgeon arrived the next morning to prepare us for surgery and to talk about options for ongoing treatments. In his words, “I have not ever removed a tumor this size, from this part of the brain that was not malignant.”
The surgery took nearly eight hours.
When the surgeon came into the recovery room, we were relieved to learn the tumor was benign—a Choroid Plexus Papilloma—and he had reduced it to the size of pea, successfully cut-off its blood supply in hopes of killing it completely over time.
Five days later, she came home from the hospital. After three days at home, a high-fever took us back to the hospital late one night.
After hours in the emergency room and multiple tests, a young intern successfully diagnosed her with meningitis. She was immediately transported to the Children’s Hospital across town where intensivists and infectious disease specialists converged on her room. We waited for several hours in the waiting room before the doctors shared, her meningitis was caused by the Pseudomonas aeruginosa bacterium, and they had never successfully treated an adult with this strain of bacteria, let alone a child.
Six weeks in an intensive care unit with many touch-and-go-moments, a shunt, hours of physical therapy, and another shunt two months later, finally put her on the road to recovery. There were difficult times as she grew up but today at 22, she’s a college student and learning to drive. She’s kind-hearted, determined, and a truly amazing young woman who strives to overcome the challenges life sets before her every day with a smile. She knows her limitations, but more importantly, she knows what she’s capable of achieving.
Life is not always easy.
Still, knowing and understanding our own personal limitations today should not limit who we become tomorrow. Instead, armed with this knowledge we should consider ourselves empowered to find new ways to achieve success and happiness in our lives. Best of all, we understand that we should not define ourselves, or be defined by others, on assumptions of what we cannot do; we do it anyway, just differently than everyone else.
Knowing such things about ourselves emboldens us and allows us to live, love, and pursue happiness on our own terms.
I can’t think of any better way to live. Can you?
Her favorite doll at the time was Red Fraggle from Fraggle Rock. The picture above shows Red in the hospital bed. Red received extra special care after surgery, too. Note the bandages on her head and hand.