Cerebral Palsy

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Patient Stories

Melissa: Cerebral Palsy

“For me, it means walking in a walker with only occasional stiffness in my legs or balance problems. Comparatively, I got off blessedly easy. Most days, I can almost forget I’m disabled.”

— Melissa, patient


former cerebral palsy patient Melissa

Somewhere between hallways named Starfish Street and Lobster Lane, a little boy not yet old enough for school ran circles around his wagon filled with toys. A tiny camouflage cast encircled his entire left leg and he wobbled a little as he went, but didn’t seem to care.

Finally, his watchful mother lifted him up and placed him gently inside the wagon he was now attempting to climb, being careful to straighten both legs slowly before wheeling him into the orthopedic department.

Near my family’s spot, a teenage boy in a wheelchair flashed me a wide smile, eyes bright even as he couldn’t move or speak. A few minutes later, a girl of the same age walked slowly toward him and introduced herself, her gait awkward but voice full of enthusiasm.

There in the waiting area at Alfred I. duPont Hospital for Children in Wilmington, Del., the journey of some families was only just beginning. But for me, this was the end of the road.

Later, the sounds of a slight Pennsylvania Dutch lilt could be heard outside the exam room, and then Dr. Freeman Miller entered, greeting my parents and me with a crinkly smile and friendly handshakes before turning his attention to me. "How’s your summer been? You must be ready to graduate soon."

I filled him in on all the details: a newspaper internship, learning to drive at last, my indecision about pursuing graduate school. There was a comfortable familiarity to our conversation, but this was no ordinary doctor-patient relationship, either. Ours had spanned nearly 20 years.

From the moment my parents first found out I had cerebral palsy at 18 months old, there was no telling if I would develop normally. It’s an unpredictable, unchanging neurological condition that appears in almost countless ways: all four limbs affected, just legs, one side of the body; stiffness, twitching, seizures, or none of these. Some have no mental problems, but others need special-education classes, and in the most severe cases cannot eat independently or talk at all.

For me, it means walking in a walker with only occasional stiffness in my legs or balance problems. Comparatively, I got off  blessedly easy. Most days, I can almost forget I’m disabled.

As a toddler, Dr. Miller had come in on his day off to visit my stuffed penguin, Michael, and me; both of us were tagged with tiny hospital wristbands post-surgery. Then, at 15, he squeezed my hand tightly as I shook with fear and watched him draw 3-inch lines in marker up my thighs, soon to become my newest scars. We would carry on silly, morphine-fueled conversations about our newest fashion accessories — my bright blue walking casts and his infamous bow ties — while I fought off muscle spasms in the following days.

Now, after two major surgeries to stretch my once inflexible leg muscles, years of physical therapy and doctor visits, I am turning 21, too old for a pediatric hospital. There is nothing more he could do for me, Dr. Miller said, but not because I was beyond helping. In fact, there would be no referral to an adult specialist. I wouldn’t need one. Virtually perfect, he told me. He couldn’t be happier.

Stunned silence and a mix of expressions received this news: a furrowed brow from my mother; eyebrows raised with surprise from my father; and, from me, a fierce embrace for the man who had mended my wounds, shared my triumphs and encouraged me to do even those things that seemed impossible. Living independently on a college campus? Done. Learning to drive? A slow process, but definitely not out of reach.

We went our separate ways quickly, me with his business card and him with my thank you card, both of us promising to keep in touch as I enter post-collegiate life. On the way out, even the barista in the downstairs café congratulated me over my celebratory latte.

Thinking back to the little boy I had seen in the waiting area, I knew I had been wrong about something. My journey wasn’t really over today. If anything, like him, it was only just beginning.

© The Daily Journal, 2011. Reprinted with permission. All rights reserved.


Melissa Pileiro is a former patient of Dr. Freeman Miller at Nemours/Alfred I. duPont Hospital for Children, and a journalism major at Rowan University in Glassboro, New Jersey. She wrote this article, which was originally published in the Vineland Daily Journal.

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