“Don’t turn away from him! He’s your son.”
Sarah had spoken sharply, in an anguished tone. We were in a hospital, and I was cradling our 2-week old son Patrick in my arms. He had begun to have another grand mal seizure. Nothing could mitigate it. Feeling squeamish, I had looked away. Now I turned back toward Patrick and kept my eyes on him as the seizure ran its course.
Sarah’s words had penetrated to my soul and etched themselves there. Before long, several more phrases related to Patrick would mark themselves indelibly on my soul.
Sarah and I had been married a scant year when Patrick was born. We had expectations typical of a young couple bringing forth their first child. This boy or girl would be bright, beautiful and athletic — a potential leader. He or she would be the first of several talented children.
When the time arrived for Patrick’s birth, Sarah’s labor lasted all night. Her obstetrician finally delivered the baby by cesarean section. A smiling nurse brought him to me in the waiting room. He was a big boy, very big for a small mother. The crown of his head was depressed in front, apparently pushed in during labor. I smiled and said, “Open your eyes, lad.” He opened his eyes immediately. A moment later, the nurse whisked him away.
I went to a telephone to call our parents. I was overcome with relief and joy, and my voice was wavering. I told them that the new mother and child seemed to be all right, and that the boy’s name would be Patrick.
When I stepped out of the telephone booth, our pediatrician approached me. He said that the obstetrician had summoned him because Patrick had had a grand mal seizure in the delivery room. He told me he was prescribing phenobarbital, and that he would have to experiment with the dosage. Patrick might need to stay in the hospital a few days longer than his mother.
We were allowed to take our child home a week later, still on medication. At our house he had repeated bouts of seizures. His medicines proved ineffective. We had to hospitalize Patrick for observation and adjustment of his medication.
Patrick had been born with brain damage, and he was to spend most of the next two months in hospitals. During that time, his pediatrician tried different combinations of drugs to suppress the epileptic seizures. The seizures only continued. Doctors performed various tests to determine the extent of Patrick’s injury. Our hopes rose with the approach of each one, only to be dashed when every result either confirmed the worst possibility or was inconclusive. We came gradually to accept that Patrick would have some degree of mental retardation. Whether he ever would speak was unknown. He would have limited use of his left arm and leg. Prospects for controlling his seizures were uncertain.
As the summer wore on, bills poured in from hospitals and doctors. From time to time, I would take a handful of them to the health insurance clerk at my office. This woman was close to retirement age, and she usually processed bills brusquely. But she was Irish, and she picked up on the name Patrick. When I came in, she would sort through my bills and say, “Little Patrick, God love him.” Then one day as I was rising to leave her desk, she looked at me through her thick glasses and caught me off guard with a question.
“He’s going to be all right, isn’t he?”
I turned away and stammered, “We . . . we don’t know yet.” I couldn’t bring myself to say, “No, he won’t be.” And I didn’t want this well-meaning woman to see the tears that were welling up.
By the end of that long summer it was clear that Patrick’s pediatrician was in over his head. He had consulted several specialists during the period of testing, but he had kept control of the case. It was high time to transfer that control.
Sarah and I made an appointment with a highly regarded neurologist. We were desperate for the smallest morsel of good news when we took Patrick in for his initial work-up. If any doctor in the city could help our baby, surely this was the one. We stood by anxiously as he made his preliminary examination. He worked in silence for several moments. Finally, he spoke.
“Our job is to salvage what’s left.”
Those grim words confirmed what I had known deep down. We could only hope and pray for something less bad than the very worst. The neurologist would try to prevent Patrick’s condition from deteriorating. He would try to stop the seizures. Neither he nor anyone else could “make Patrick better.”
The neurologist found drugs that reduced Patrick’s seizures to a dozen or two a week. The number varied. When flare-ups occurred, the doctor would try a different drug or an increased dosage. Patrick’s progress in the things that normal babies do was excruciatingly slow. For months he slumped in his high chair like a sack of flour. He was well over a year old when he learned to drag himself forward and turn himself over using his one serviceable arm and hand. At age 3, he still couldn’t walk because of the spasticity in his left leg.
One weekend we went to visit Sarah’s parents in another city, and we took Patrick to Sunday Mass. The day was sunny and mild. When Mass let out, a policeman was directing traffic outside the church. He was smiling and bantering with the people crossing his intersection. I was carrying our 3-year-old son. Patrick was a beautiful child, with blond hair and blue-green eyes under long lashes. As we crossed the street, the policeman looked at him and chuckled. Then he spoke good-naturedly.
“That boy’s too big to be carried.”
My heart sank. I tried to smile. I couldn’t answer.
Patrick was 3 1/2 when he learned to walk. He walked slowly and unsteadily. He limped badly. He fell frequently. But he did walk. That is, he walked for a couple of months. Then his seizures became almost continuous. We took Patrick to the hospital on Mother’s Day. A civil rights demonstration was blocking access to the hospital, and we had to get a police escort to pass through. Our son was to remain in the hospital for five weeks. During most of that time, he was unable to eat regularly because of his frequent seizures. Patrick had lost a third of his weight by the time doctors performed brain surgery to reduce the seizures.
Patrick still was having several seizures a day when he was released from the hospital. Sometimes he had more than several. He would be 4 1/2 years old before he gathered enough strength to walk again. One day that autumn I came home from work and parked my car in the driveway as usual. The weather was warm, and Patrick was watching me through the screen door of the house. Unable to stand upright, he was kneeling. A boy Patrick’s age, who lived next door, was on our front step talking to Patrick. As I approached the door, this boy looked up at me.
“Mr. Byrne, why can’t your little boy run and play?”
I managed to tell him in simple terms about Patrick’s brain injury, and the boy went home frowning. His question made me wonder once again why God lets terrible things happen to innocent people. I mulled over what I had been told in theology class about an imperfect universe. The classroom explanation had been easier to accept when I was in college.
It was years later when a friend, a man who was Jewish by heritage and not apparently devout, asked me whether my religious faith had helped me get through Patrick’s first months and years. I told him that I had prayed fervently throughout that period. I had asked God to help Patrick recover from his injuries and to enable the doctors to bring the epileptic seizures under control. I admitted that I had even asked God to let Patrick die a quick and painless death rather than survive gravely handicapped and wracked by seizures. “In the end,” I said, “not one of my prayers was answered.”
I thought for a moment, then added, “Yet my faith somehow gave me strength to help care for Patrick, deal with his chronic problems, get through his occasional crises and address other challenges in my life.” My friend responded firmly:
“That is how your prayers were answered.”
Terence Byrne is retired from the U.S. Department of State. Patrick, now an adult, lives an active life in a neighborhood residential facility.