My first experience with healthcare and disability came when my youngest daughter was born. I knew something, besides her obvious club foot, was amiss. The pediatrician arrived. “Why doesn’t she flinch and fling her arms back?” I asked as I leaned her back to latch onto my breast. “She’s fine,” he said.
He looked in her mouth and noted her high, arched palate. “Your palate is high, too,” he assured me. “It is?” I thought.
“She’s jaundiced,” he said, noting her yellow eyes and skin. “Very common,” he added. “She has the same color eyes and skin as you.”
“Doesn’t that make me jaundiced, too?” I thought.
He patted me on the right shoulder, and I cringed in pain. “My pain is in my right shoulder blade,” I had told the nurses, confused. “It’s gas,” they assured me.
“In my shoulder blade?” I thought. A week later they removed several gallstones and my gall bladder.
One mystery was solved, but the other was not. I kept asking questions about my daughter. “I don’t think she can hear well. She sleeps through parades,” I said. “Mother is hyperattentive,” the pediatrician wrote in her chart.
After six months, the large size of my daughter’s head could no longer be ignored. The results of a CT scan and genetic testing came back at the same time. “She has a rare genetic abnormality. We don’t know what it will mean for her,” the geneticist said. “Maybe that’s better,” I thought.
At five years old, she got her first set of hearing aids. Moderate loss of hearing on the left, severe loss on the right. “She’s been like this since birth,” the audiologist said. “I know,” I replied.
I turned jaundiced again. “Stop sunbathing,” the nurse practitioner said. “I don’t,” I replied. They did an ultrasound. “Your gall bladder looks fine,” the radiologist said. “I don’t have one,” I said. “Are you sure?” they asked. “Can it grow back?” I wondered. It turned out my bile duct was obstructed.
Soon I developed severe pain in my upper abdomen. “You are drug-seeking and not in pain,” the emergency room doctors said. It turned out my pancreas had been malformed since birth. I entered the world of disability myself at that point. The initial pediatrician turned out to be right. My daughter and I are alike.
Shirley Phillips
Nashua, New Hampshire
