Her favorite doll was Red Fraggle. Red received extra special care after surgery, too. Note the bandages.

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.

I try to be a “glass is half-full” kind of guy. Some days, I’m successful; other days, not so much.

Still, I wake up each morning feeling grateful that I have the opportunity another day provides. My feet hit the floor with one thing in mind: Find the things that make you happy.

Happiness surrounds us, but most of us walk through each day with blinders on our eyes. We see what we want to see, not always, what is before us.

It sounds corny, I know. I just don’t believe there’s any point in me adding to all the sadness in the world. I think it’s better to look for the happiness, and if I’m lucky, maybe I can help others find a little of it, too.

I understand some people have legitimate reasons to be sad or unhappy, even for extended periods. For most of us, though, I think being unhappy is a choice we make each day.

I choose to be happy. How about you? 

He showed up the door of the room on my third day in the hospital during the summer of 1971. He came by, he said, because had heard me cry-out the night before and wanted to make sure I was okay. We were both on the rehabilitation floor of the hospital; I was being fitted for a bent-knee brace and learning to walk on crutches as part of my treatment for hip dysplasia.

His first name was Dempsey, but I never caught his last name. He was ten-years-old, although much smaller in stature that I was at eight-years-old; the top of this head barely rose above the handle of my door. He had impressive cowlick above his left eye that caused his short-cropped blonde hair to stick straight out in the front. He seemed to vibrate with the energy of boy who had caffeine coursing through his veins rather than blood.

I told him that was upset the night before because two male orderlies woke me from a sound sleep and carted me down to the basement of the hospital for tests and measurements. The kindly, older woman nurse who had been taking care of me was not around. She explained everything; the guys explained nothing. I was so afraid because I didn’t know what was happening.

After hearing my story, he smiled and bounced into the room. He spent the next hour with me watching me draw and telling me how hospitals actually worked. He told me about hospital shifts, the grumpy nurse to avoid after lunch, who to ask for ice cream and get it every time, and what “physical therapy” really meant. Dempsey was hospital pro. He had already been there two weeks learning how to use the hooks that he called his new “hands.”

“He is a Thalidomide baby,” my mother told me when I asked about him as a teenager.

Thalidomide was a drug marketed as a sedative but was often used by pregnant women in the 1950’s and early 1960’s to treat morning sickness. Many women who used the drug found unfortunately discovered that their newborns suffered from limb deformities, including shortened or missing arms, among other more life-threatening and debilitating deformities.

Dempsey was missing his arms from the elbow down as I recall, but I don’t believe he had other challenges; at least none that were visible, or none that kept him from doing the things he wanted to do for those ten-days we spent in the hospital together. By the time I met him, he had mastered the large movements with his new “hands,” but still could not hold a pencil or spoon, let alone use one. Until he could write his name and feed himself, he couldn’t go home.

He did not seem to be in much of a hurry to do either.

Our daily routine at the hospital was similar. The nurses would wake us at 7:00 AM for breakfast and the orderlies would show up about 9:00 to take us to physical therapy. Physical therapy was a couple of hours, and we were back to our rooms in time for lunch. Our afternoons were “free,” if you could call them that. It only meant that we weren’t scheduled for any tests or therapy, and could spend that time doing whatever we wanted in our rooms, or in sometimes the out in the hallway. Dinner was about 5:30 and the hospital’s only visiting hours were from 6:00 to 8:00 PM. Lights were out at 10:00 PM for us.

My parents and grandparents visited every evening, and I talked to them at least once each afternoon on the telephone. My favorite aunt even sent me a care package or two from Kentucky to help me pass the time. Dempsey’s mom visited him a few times while I was there, but I don’t remember other visitors or care packages for him. I wondered why his mom did not come every night and why he didn’t have a dad who visited, too, but I never asked him. He didn’t seem to mind not having many visitors.

Dempsey and I became fast friends. We did everything together including, afternoon races down the hallway in wheelchairs (that grumpy nurse was always yelling at us), coordinating Jell-O®-slurping contests with the other kids on our floor at lunch, and making happy drawings for the terminal kids on the floor below. Of course, Dempsey could not draw or color because he had not mastered the fine-motor skills with his hooks. Instead, he told us what to draw, or how to make our pictures, “be more happier” looking.

By my eighth day in the hospital, I had received the bent-knee brace and mastered the art of walking up and down stairs on crutches. Two days later, I said goodbye to the nurses and raced Dempsey one last time in the wheelchairs to the finish line where we met that grumpy nurse who somehow managed a smile.

Dempsey walked us to the elevator and said, “Be more happier! You get to go home today.”

I was sad to leave him.

That was the last time I saw Dempsey, but he has never been far from my mind. Throughout my childhood, I thought of him every time I faced a physical or mental challenge I wasn’t sure I could overcome, when I played basketball, and when I ran track.  As an adult, he comes to mind whenever I’m feeling sorry for myself, when I’m do something unexpected for someone that brings a smile to their face, and of course, whenever I slurp Jell-O®.

Dempsey taught me that life’s adversities could be easily overcome with a change of attitude and perspective.  He showed me that it was okay to take on the grumpy in the name of a little fun and that it is much better to help other people “be more happier” than it is to wallow in my own self-pity.

Having a handicap is a life challenge, but being handicapped is merely a state of mind.

Thank you, Dempsey. You made a difference. Wherever you are, I thought you would like to know that I’m still trying to follow your lead.

_____

Photo credit: Pubescent Boy in the Light by Lynne’s Lens