Close to Home

      Since the hospital was on her way home, Linda decided to stop and see Bill and Carla after she had finished her other visits. Parking was a bit of a problem this late in the day, but Linda didn't mind walking. It was one of those unusually warm days in February that made you glad you lived in the South. The moist, earthy smell of Spring floated on the light breeze--a real tease at this time of the year. Linda took off her sweater and strolled across the lawn in front of the hospital.

      As her heels clicked on the polished granite steps, she had a sudden sinking feeling in her stomach. Linda always experienced this sense of dread before she saw Bill and Carla. She grabbed the brass handle of the oversized glass door and took a deep breath. "Get a grip on it, Linda," she told herself. "You've been working in this job for 6 years now. So, just do it." She pulled the door open and stepped into the lobby. Inside the air was warm and stuffy with an antiseptic smell that took her back to the first time she met the family. It was just five months ago, but somehow it seemed much longer.
 

Baby Girl Johnson

      The neonatal intensive care unit called the early intervention team to say that a baby with a chromosomal abnormality was born 4 days ago. The baby's condition was still quite tenuous; however, she appeared to be stabilizing. If her current progress continued, it was possible that she might go home in 2 or 3 weeks--that is, if the parents decided to take her home. The infant's mother was scheduled for discharge in the next day or two, and the NICU staff thought the team should get involved and meet the mother before she went home. Linda volunteered to stop by the next morning since the hospital was on her way to work. Linda's memory of that first meeting was vivid.

      "Mrs. Johnson?" Linda had asked as she poked her head into Carla's room on the maternity floor. Carla startled at the sound of her name. She was dressed in a white velour robe and was just tying a band of pink ribbon in her hair as Linda entered. "Mrs. Johnson," Linda continued, "I'm Linda Cummings from the early intervention team. Did Dr. Parker tell you I was coming?"

      "Oh, yes . Yes he did. Please come in," Carla answered softly.

      Sensing Carla's discomfort, Linda took up the conversation: "Well, congratulations! I hear you have a new little girl. Is this your first child?"

      "Thank you," Carla said. Her eyes filled with tears. "No. This is my second. I have a boy, Ryan, who's 2 years old."

      "I'll bet he misses his mommy. What's your little girl's name? Or haven't you decided yet?"

      "Elizabeth," said Carla, "Elizabeth Paige Johnson." A faint smile came over her face.

      "Elizabeth Paige . how pretty. I'd love to see her. Do you think we could take a peek?" Linda waited for her response.

      "I'm not sure," said Carla. "Let me check first. She had a rough night. She started having ." A tear trickled down her cheek and she grabbed a tissue from the bedside table. "She had some seizures last night." Carla walked to the other side of the bed and picked up the phone.

      While Carla was checking on the status of the baby, Linda glanced around the room. She couldn't help noticing the absence of flowers and cards. Only a single vase of pink roses sat on the shelf beside two cards. She supposed the roses were from Carla's husband, Bill. On the chair beside the bed were two skeins of pink yarn and a pair of knitting needles with just the beginnings of "something pink" attached. Through the half-opened bathroom door, Linda could see bottles and a breast pump sitting on the counter.

      "They said she is doing better now," said Carla. "We can go see her for a few minutes."

      The two women scrubbed their hands and put on masks and gowns. They entered the NICU and Carla led Linda to one of the small isolettes. The card above the tiny bed said "Baby Girl Johnson" but someone had written in "Elizabeth" as well. The baby was enmeshed in a tangle of wires and tubes. A barrage of machines with blinking lights, buzzers, and bleeps formed a semi-circle around the clear plastic bed. Linda admired the baby and asked questions of Carla. Linda was very impressed by Carla's knowledge about Elizabeth's condition and status. While they talked over the isolette, Carla gently stroked a small patch of skin on the baby's thigh; about the only spot without wires, tubes, or bandages.

      The prognosis for Elizabeth at that time was quite grim. It still is. Most children with the syndrome she has die before they are 2 years old. Severe mental retardation and heart abnormalities head up a long list of difficulties associated with this chromosomal abnormality. The Johnson's pediatrician and the NICU neonatologist provided Bill and Carla with this information within a few days of Elizabeth's birth.

      Carla went home the day after Linda's visit, but she came back every evening to spend about 2 hours with Elizabeth in the NICU. When she could, she visited with the baby twice a day. Linda continued to see the Johnson family at the hospital during the next few weeks. Then Elizabeth was discharged and Linda visited in their home on a regular basis. Talking to Carla was easy. She was open about her fears, worries, and hopes about Elizabeth. Carla wanted to know everything she could to help her daughter both medically and developmentally. Bill was another story. Although he worked long hours, he was home for Linda's visits whenever he could be. Even so, he said very little; leaving most of the talking to Carla.
 

Life Before Elizabeth

      Over the past 5 months, Linda has learned a great deal about the Johnsons from Carla. Carla was born and grew up in a small town in the southeast, just 200 miles away from where they lived now. Her father still practices law there and her mother has her own greenhouse where she raises and distributes hybrid orchids. Carla speaks highly of her family, including her two older sisters. She appears to rely on her family a great deal for emotional support.

      Bill is from a large city in the Northeast. According to Carla, Bill doesn't talk about his past very much, not even to her. His father was an alcoholic, which led to his parents' divorce when Bill was 10 or 11 years old. Carla has never met Bill's father. Sometimes she wonders whether he is dead or alive, but Carla says she knows better then to bring up the issue with Bill. Bill's mother still lives in the city and works in a large department store. They visit her about once a year, but she has only come to visit them twice since they were married.

      Bill and Carla met in graduate school. Bill had moved to the southeast to pursue an advanced degree in chemistry and Carla entered the same program a year later. The following year they were married and Carla dropped out of the program, content to have her master's degree. She took a job as a research assistant at the university, and Bill continued in the program in pursuit of a doctoral degree. Bill's scholarship money dried up a year later, so they had to live on Carla's salary alone. They experienced some financial difficulties when Carla unexpectedly became pregnant and gave birth to their son, Ryan. Nevertheless, they weathered the tight times and Bill earned his doctorate.

      Shortly after graduation, Bill was offered a position as a senior-level researcher at a large pharmaceutical firm in a neighboring state. He accepted the offer and the family moved. Carla regretted leaving her friends and colleagues at the university but, she enjoyed becoming a stay-at-home mom. When Carla became pregnant again, the family bought their first house.
 

Bill's Story

      Linda walked across the lobby to the bank of elevators on the far wall. It was only a matter of seconds until she heard the "ding" and looked up to locate the right set of doors. The far elevator opened and Linda waited to the side while the passengers got off. Among then was a woman in a wheelchair who was escorted by her husband and a nurse. In the crook of her arm, the woman held a newborn baby swaddled in a pink blanket with satin edging. The new mother's gaze was intent upon the baby's face as she outlined the child's cheeks and brow with her index finger. Linda had to laugh at herself. "I suppose I forget that there actually are some babies that escape  birth defects," she thought.

      Once on the pediatrics floor, Linda quickly found Elizabeth's room. Bill and Carla were both standing beside the shiny metal crib where Elizabeth was lying motionless. "How's my gal doing today?" Linda asked cheerfully as she entered the room.

      "Hi, Linda!" Carla answered. "You just missed the doctor. They've scheduled the surgery for 7:30 tomorrow morning. He says everything looks good."

      Although Carla sounded cheerful enough, Linda knew better. She could read the worry on her face. It was the same look Carla wore every time Elizabeth was admitted to the hospital. This time, however, Linda chose not to deal with it. Instead she looked down at Elizabeth and pretended to hold a conversation with the unresponsive infant in an attempt to lighten things up. Elizabeth's hospital gown had lavender embroidery around the neckline and cuffs and a pink appliqued bunny over her heart. A set of matching slippers lay on the corner of the mattress. Carla had really outdone herself this time, thought Linda. Carla made beautiful clothes for Elizabeth and always had her dressed to the nines. But even the beautiful clothes couldn't conceal the fact that Elizabeth looked different. Her odd face, floppy muscles, and vacant stare were easily detected.

      Linda and Carla talked for about an hour. They discussed the revision of the colostomy that was to take place the next day and they talked a little about Ryan. Ryan had evidently put on quite a display of anger when Bill and Carla left for the hospital and left him with Carla's mother. Bill had little to contribute to the entire conversation. For the most part, he just stared out the window onto the parking lot below. At the end of the hour Linda offered to stay with Elizabeth for 20 minutes so Bill and Carla could go for a walk or get a cup of coffee. When they returned, Linda picked up her things, said her goodbyes, and started toward the door.

      "Wait a minute," said Bill. "I'll walk down to the lobby with you. I forgot to pick up a newspaper earlier." He turned to Carla then and said," I'll be right back, honey. Do you want anything?" Carla shook her head.

      "I'll give you a call tomorrow," Linda said to Carla on her way out the door. "Give my gal a kiss for me in the morning." Linda walked toward the elevator with Bill at her side. It felt strange. very strange, indeed. She realized that she had never been alone with Bill before.

      Linda managed some small talk on the elevator, but Bill didn't cooperate. He seemed to have something else on his mind. After what seemed like an eternity, the elevator doors opened onto the lobby floor. Linda gave a little sigh of relief as she stepped off but, instead of heading toward the giftshop, Bill followed her toward the front door.

      "Linda, do you have a few more minutes?" Bill sounded as though he was almost pleading.

      "Sure," Linda replied.

      "Mind if we step outside?" asked Bill.

      "Not at all."

      Bill held the big glass door open for Linda and they both stepped out onto the granite steps. Bill turned his back to Linda and stared out at the setting sun. Linda stood silent.

      "Sometimes I just wish she would die," he began. "I wish she would die and put us all out of this damn misery. I know I shouldn't feel this way...but I do. I can't help it." Bill's voice grew louder with each word. He turned to face Linda. "Every day I see Carla getting closer and closer to her and I know that the more attached she gets, the more it's going to hurt her when Elizabeth dies. She's going to die, Linda. We both know it. I just wonder if Carla knows it. My God, how can a father feel this way about his own child?"

      Linda was in shock, but she sensed Bill's need for comfort. Even so, she didn't know what to do or say. The two just stood and stared at each other for a few seconds. It was Bill who finally broke the silence.

      "Listen, I'm sorry," Bill said in a soft voice. "I shouldn't be laying this on you. I should be thanking you for all you've done for Carla and Elizabeth. You mean the world to her, you know."

      "No, don't be sorry," Linda said, as she began to regain her composure. "I'm glad you told me."

      "Well, I've taken up enough of your time. You have your own family to get home to." He squeezed her shoulder gently as he walked by her, pulled the brass handle, and disappeared behind the glass doors.

      Linda stood motionless on the steps. No, she wasn't glad that he told her. Now she was the one who was upset. For the past 5 months she had done nothing but talk about how well Elizabeth was doing--even when she wasn't. She was doing all she could to help Carla keep Elizabeth alive. How could she have been so blind to Bill's feelings?

      There was a chill in the air now. Linda put on her sweater and held it tightly around herself. The lights in front of the hospital gave off an eerie orange glow as they flickered on and Linda hurried across the lawn to the parking lot. She jumped into her car, still warm from the afternoon sun, and took a deep breath. She thought about the woman on the elevator with the newborn baby. She thought about Elizabeth lying motionless in the crib with the pink appliqued bunny over her heart. She thought about the baby in her own womb . only the size of a peanut.

This story originally appeared in McWilliam, P.J., & Bailey, D., (Eds.). Working Together with Children & Families, Case Studies in Early Intervention. (1993). Baltimore: Paul H. Brookes Publishing Co.

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