When I was pregnant with my son, I had to have weekly IVIG treatments at the Pediatric Hematology and Oncology Clinic at the Medical University of South Carolina. They administered the IVIG in the same room they administered chemo. This story is based on real people I observed while there. As I sat there trying to keep my unborn child alive, my heart broke for the other parents who had to watch their born children fight for their lives.
It was a place too stark and sterile for children, too old and dark for youth. No child should have to venture through those blue double doors. No child should ever have to walk that long, cold hallway.
Margaret Robinson walked that hall each week with legs of heavy iron. People said there was hope in the room at the end but, so far, it had eluded her. She hadn’t caught even a glimpse of it. Every visit had been like someone choking her, the grip getting tighter and tighter around her throat with each new week of treatments that weren’t working.
She forced her heavy limbs one in front of the other. Her smart black heels clicked as she walked but in her mind, she heard the screech, clang of metal dragging along the cold tile floor. She felt like the Tin Man filled with cement. Needing to get to the wizard but unable to go through the witch’s forest.
On her left was what some called the needle room. A boy of about seven was shrieking while being held down by women in brightly colored hospital scrubs. One – dressed in blue scrubs with cheerful yellow smiley faces all over it – pinned his arms to the table. A woman who was probably his mother held his hand and tried to hush him with tender words. He screamed and tried to kick his legs (which were held down by another lady dressed in pink scrubs patterned with rainbows). A needle was stuck into his little arm. "It blew," the nurse muttered as she removed it. "I’ll have to try again."
Suddenly the boy’s whole body washed with resignation. "I hate this place, I hate all of you," he spit through clenched teeth. "Why do you have to hurt me?"
Margaret returned her gaze forward in the hall. She had not stopped her slow, laborous walk. Her own child skipped and hummed along beside her. Without even looking at Rosie, she knew what her daughter was doing. It was the same every week. The little girl always skipped and hummed as they passed the needle room. She skipped and hummed while covering her ears to the wailing and protesting that often erupted from there. In the beginning, the girl would pull her hair down over her ears and hold it there tightly with her palms pressed hard against the lobes. Now her hands were the only things she had to muffle the cries. The hair was mostly gone.
A computer on wheels was pushed down the hall by a woman wearing lime green scrubs with teddy bears peppered across them. The cart – with its shelf stacked high with files – met them in the hall. "Good morning, Miss Margaret. Rosie. How are you today?" It was the same greeting every time, and after 8 weeks, Miss Margaret could not truthfully answer the woman. The paper lady, as Rosie called her, spent her days getting signatures, typing in her computer, and talking on the phone. How the hell do you think we’re doing? Miss Margaret wanted to say. She wanted to tell the paper lady that things weren’t going so well. She wanted to remind her that the names on those files were the names of people’s children. Sick children. Dying children. She wanted to say that her daughter was dying and that nobody could do anything about it. She wanted to tell the paper lady that she was suppressing the urge to get down on the floor and kick and scream and tear through the hospital linoleum until they all dropped into a black abyss.
"We’re fine," was what always came out.
Rosie smiled, her hands still on her ears, the hum still floating softly from her lips. Miss Margaret signed something the paper lady handed to her. Then the too short, too long journey down the hall resumed. Screech, clang, screech clang. To the right there was a small conference room. The door was ajar revealing an overstuffed leather couch facing two matching chairs. Though she couldn’t see it from the hall, she knew that in the corner of that room, there was a child-size table with two child-size chairs and a small wooden box filled with toys. That room became a prison when the door was shut. A prison where people were forced to listen to horrifying things, the things that made up many parent’s nightmares and her recent reality. She had once seen a family come out of that room, the mother clutching her small child to her chest. Those parents had smiles on their faces, they stepped in the air and their bodies floated as they made their way toward the exit. They were the only ones she’d ever seen come out of there with wide-awake souls. They were escaping. She hated them.
Screech, clang, screech, clang, screech, clang. They had come to the end of the hall. Now they would take their seats in the middle of a play entitled The Fighting, The Dying, and The Dead. Through the doorway, a cocophony of sight, sound and emotion filled the space. Vinyl recliners lined the walls, each with its own television from which cartoons and talk-shows bounced an amalgamation of constantly moving light against the dimness of the room. IV stands stood at attention next to each chair, whirring, beeping, drip, dripping; soldiers delivering hope and fear, comfort and distress, simultaneously and without sentiment.
Rosie sat in her recliner. It was hers because she sat there every Tuesday. Margaret sat in a small metal folding chair beside her. The soldier between them had not yet come to life. It would be a few minutes before the nurses would cheerfully hook it up, it’s long flexible tubing invading her little girl’s body in a place carved out especially for it. Rosie opened up Goodnight Moon and began to flip the pages. Even now, she seemed oblivious to the sorrow around her. Adults in folding metal chairs, with dark, sunken eyes and tear-stained cheeks clutched tissues and conveyed their stories to one another without speaking a word.
Margaret observed the children as she did every week. They sat in their chairs and played, read books, sang, laughed and chatted with eachother. A few faces reflected the sea-sickness commonly brought about by the combination of drugs they were getting. Yet all seemed strangely at peace. At peace in their ignorance, at peace in their innocence, perhaps at peace in their faith. Margaret felt that familiar feeling; her spirit melting into molten lava which would eventually pour out as an eruption of tears.
If it were true that God caught all the tears of his
children, He could fill heaven just with those cried in
"Can I hold you for a little while, Rosie?" she asked her daughter.
"Why, Mamma? I’m reading," Rosie said, looking at her mother with the genuine curiosity of a six-year-old.
"I just need to hold you. How about I read your book to you?"
"Na, I’ll do it myself. I don’t want to be held." Rosie stated with her usual self-determined spirit. Then a smile danced in her eyes. "But I will hug you," the small voice said, knowing this would please her mother.
Margaret picked up her first-born and held her tightly in her arms. For a moment, Rosie was again an infant. Before she got sick, before the news came, before her mother had to think about what it would be like to lose her. Margaret could almost smell the blended aroma of baby-powder, soft lotion, and pureed peaches. "I love you, I love you, I love you," she whispered into her daughter’s ear.
"I love you too mommy, now can I get down?" Rosie said squirming.
"Sure, honey." Margaret placed her gently back into the vinyl seat, covered her with a blanket and handed Rosie her favorite book. The eruption was coming. She could not hold it back. Rosie looked at her mother’s face with concern for a brief moment, then returned her attention to her book.
"Mrs. Robinson." Nurse Amy was standing in the doorway looking at her. Smiley faces in primary colors dotted her bright purple uniform. Margaret lowered her eyebrows questioningly but the nurse was already focused on the little girl. "Hey Rosie!" she said smiling. Margaret detected something unfamiliar in the nurse’s voice. "Can I sit with you while your mommy talks to the doctor?" Nurse Amy asked, then, looking at Margaret again, "the doctor wants to talk to you before we begin this week."
And then it was there. Margaret knew what that unfamiliar thing was in Nurse Amy’s voice. It was sympathy. It was subtle but it was definately there. Not the sympathy of one who is sorry for what you are going through. Nurse Amy always had that. This was different. It was the sympathy of one who knows that the monster is right around the corner now and that you are headed full speed into its clutches. Margaret rose heavy and slow from her metal chair, glanced at Rosie through eyes filling wth tears, and forced herself to walk toward the conference room.
Screech, clang, screech clang, screech, clang…