First Five Pages

First Five Pages

Chapter 1] Dormant Spirit

The baby’s chest heaved as she struggled to breathe. Heather wasn’t my child, but her distress tattered my heart. Fourteen months old, the little bundle lay swaddled in a blanket, forgotten and lost among unchanging medical routines.

“Just be glad she’s only abandoned, not abused.” The words on the other end of the phone line stung. I wrestled with anger, but instinct quieted any sharp response. The ribs of the dining-room chair pressed ridges into my back. My mind and muscles tensed, threatening to undo my feigned serenity. Anxiously I wove the phone cord in and out between my fingers and looped it around my thumb.

The laughter of my young son interrupted thoughts of the fragile girl and her dismal existence. Robust three-year-old Tony pushed his wooden tugboat around on the kitchen’s vinyl floor, cresting the waves of his make-believe ocean.

Straightening my posture, I stirred my cup of strong coffee and took a quick sip and resumed the phone conversation.

“Don’t you know about her?” I asked the social worker on the phone line. Sweet words flowed from my mouth. “The nurse said you’d guide my husband and me on how to proceed.”

“I can’t help,” the woman repeated in blunt terms. She meant she wouldn’t. I’d seen her, clipboard in hand, jotting crisp notes on a pad while talking to parents of ill children.

“Health and Rehabilitative Services says they’ll speed up our licensing as foster or adoptive parents if you give the directive,” I persisted.

“We don’t need you,” she replied. “There are others already licensed.”

I halted the entreaty, baffled at her disinterest.

Didn’t the woman realize what abandoned meant? Heather had never felt the warmth of the sun, seen a field of wild flowers, or smelled bacon and eggs sizzling in a skillet. She knew the pain of needles and surgery, but not the comfort of a mother’s love, bedtime stories, and good-night kisses. Nor did she know the pleasure of a father’s romping playfulness and gentle teasing.

Most hospital staff deemed Heather deaf, blind, and retarded. She did not know how to move her feet or hold up her head. Born ten weeks early, tiny enough to fit in the palms of two hands—breathing difficulties and resultant airway damage had silenced all her crying. Though the mute child teetered near death, a surgeon repetitively attempted fixing her airway. Certainly no one believed she would ever talk. No one dared dream she might survive to adulthood and have children of her own.

More visions of Heather flashed through my mind. She had lived her whole life in that hospital. The little one languished in a crib. She weighed just twelve pounds. Her skin had a bluish translucence; her face was puffy. Her body was limp as in sleep, but her eyes were open, not alert, yet not vacant. A sprinkling of fine brown hair lay flat on her head. A sterile, windowless room was her entire world. No one had ever taken her home. Rumor was they were transferring her to an institution.

If I’d had any idea of how that pitiful youngster was to transform our future, I would have shouted from the rooftop in fear and joy and disbelief. Somehow she’d summoned me and communicated an awareness of her plight.

 

At age eighteen, I had made a vow: no one in my family would ever be warehoused. Institution. The word brought sharp, twisting anguish. As a college freshman I volunteered in a state hospital . . . long, anonymous rows of children, handled only for assembly-line diaper and linen changes. Oh, the utter desolation and misery of those aloof, deformed babies, the helmet-wearing, head-banging children.

No one deserves such a fate, yet among them had been two who didn’t seem to belong, as they could respond and communicate. Jenny’s cerebral palsy imprisoned her clear mind in a malfunctioning body. Eddie was retarded and afflicted with waist-down paralysis. Both were in wheelchairs; both were gentle and loving. What they needed was a home and family. I don’t know what happened to them.

Most disturbing was an eerie absence of the human spirit. Any child not already brain dead would suffer a living death in such a place. On the long city bus ride home, I’d mentally castigate those who’d orchestrated the children’s dismal existence, while only superficially acknowledging the potentially greater tragic impact of caring for such a burden-laden child in one’s home.

My life was simple until that warm September day. It started pleasantly enough with all the signs of an ordinary one in sunny Florida. The alarm clock buzzed, and my eight-year-old daughter, Jamie, tumbled out of bed. Her shoulder-length ringlets puffed out in disarray. A knock on the door signaled the school car pool’s arrival.

We lived in Gainesville off a main road on the west side of town where the city ended and hardwood forest began. Early evening, the gravelly noise of tires rolling onto our driveway made me look out the window as my neighbor, Celeste, blared the horn of her sporty Toyota Celica. I went out to greet her. She lived two houses down and across the street with her husband, Mark, and daughter, Haley.

“Come with me to the hospital?” Celeste asked, making clear the reason for her sudden arrival. “Maria needs company, and I’m scared to see the sick babies.” Maria lived nearby. Her newborn son had just been admitted to the PICU in heart failure. Maria, Celeste, and I were good friends.

The elderly woman at the hospital’s front lobby desk handed over the visitor badges. Elevator doors opened, and we walked down the hallway to the pediatric intensive-care unit (PICU). Up one more floor would have led us to where I worked as a registered nurse in labor and delivery. I inched open the door and called out to one of the PICU staff. After granting permission, an aide led us to a sink where we scrubbed our hands with germicidal soap.

Eerie whooshing from the ventilators and beeping of alarms broke the otherwise stifling silence. Six cribs were spaced along the perimeter of the circular room. We passed a baby dressed in pink, with so many wires and tubes attached to her that she looked like a marionette.

Adjacent to the next crib, our friend Maria sat in a sturdy wooden rocker with her ailing newborn son nestled to her chest. She rhythmically pulsed her feet to the floor to create a gentle sway. Celeste glanced over at the baby in pink. “What’s wrong with her?” she asked.

“No one’s mentioned anything,” Maria answered.

“She looks like a pulmonary kid,” I said, after the briefest appraisal, not wanting to know more. Familiarity with the appearance of chronic lung patients had become second nature. As a new graduate, I’d worked the graveyard shift on a respiratory floor. The assignment was not voluntary; coughing and mucous made me queasy.

“Her name is Heather. She was born premature, and her lungs are damaged,” confirmed the nurse.

“How old is she?” Celeste asked.

“Fourteen months.”

“She’s so tiny.” Celeste winced.

“All her energy goes toward survival, not enough left for growing,” the nurse said.

“Where’s her family?” Celeste asked.

“She doesn’t have one. Her mother never visits and doesn’t want her.”

Tears welled up in Celeste’s eyes, “How could anyone discard a sick child?”

Amazed at my friend’s naiveté, I handed her a tissue and conceded that my work in labor and delivery shielded me from such misfortunes. I related how I’d asked a neonatal nurse about how she coped with castaway babies. “Hmm, I don’t have to face that sorrow. Sick newborns aren’t much different from healthy ones,” she’d explained. “It’s after they go home or to PICU and the permanence of handicaps becomes more obvious, that is when they are abandoned.”

Back in the PICU a few days later, I kept Maria company. Her baby would likely remain hospitalized for weeks. He needed surgery.

I observed as a plump nurse lifted the pulmonary kid out of the crib. Poor thing sagged limp like a rag doll. The nurse gently slid the small one into a swing and secured a safety belt. Even so, little Heather slumped to one side. The caring woman tucked a fluffy teddy bear around the baby’s belly and torso to serve as a propping bolster. She adjusted the flow of the supplemental oxygen and fiddled with life-monitors and double-checked that the warning alarms remained toggled on.

After she left, a young volunteer squatted beside the mirage of a child, attempting in vain to get a response. First he jiggled a brightly colored rattle. He cajoled and cheered, yet little Heather’s face remained expressionless. He wound up a music box and attached it to the swing. She paid no attention. “You don’t like the music?” he asked. “Maybe this will spring a smile.” His jovial face became a living cartoon. His cheeks puffed in and out like those of a blowfish. Eyebrows rippled; ears sprouted thumbs and waggling fingers. Heather’s eyes stayed dull and her face remained barren.

“Some of the staff presume she has no vision, hearing, or thinking,” he remarked, “but I keep trying.” He walked from the room in quiet reflection.

A few minutes later erratic movements of the sorrowful pulmonary baby caught my eye. No longer resting passively in the baby swing, she pitched her head from side to side, in a weird total absence of uttering any sound. Her body jerked, arms and legs flailing. Seizure! I presumed. After starting for the emergency cord, I noticed the tracheotomy tube protruding from a hole in her neck.

“Maria, she isn’t convulsing; she is crying!” The mental gear of a calm response to an emergency shifted to empathy. I moved closer to the little one with sudden comprehension of her strange quiet. Breathing in and out of the trach tube diverted all air from flowing through her vocal cords, making audible cries or giggles impossible.

“It is okay.” I whispered soothing words to the anguished baby and touched her pale fingers. The weeping stopped. As I studied her face, our eyes met for an almost imperceptible fleeting moment, and her soul gripped mine. What gifts might lie hidden in her dormant spirit? Were the damning medical prophecies true?