A State of Grace ...

Dear Reader, this post is quite lengthy, but to shorten it would be unfair to both my subject (Grace and her son J.R.) and to you. This is a true account, only the names and places have been changed to protect this woman's privacy.

Grace was awakened by the happy laughter of her three year old son, J. R. She struggled to push the cobwebs from her weary mind and find the source of the noise. J. R.’s usual morning demeanor was grumpy, demanding, and whining, but there he was running in circles in the back yard, the five dachshund puppies intertwining his feet as he raced about, squealing when he almost tripped over one. Grace found herself smiling, she leaned her forehead against the cool window pane and let her mind wander-back through the memories, before all the weariness that seemed to engulf her now.

Grace’s husband, John, had suffered lung cancer and was paralyzed from the waist down, a condition known as spinal cord compression. As the tumor in the lung grew it placed increased pressure on the spinal cord. J.R.’s only memories were of his daddy lying in a hospital bed. His mother, Grace, was always busy caring for his daddy, or doing some lady’s hair in the funny chair that went in circles that Mommy had put in the living room. Daddy was never able to pick him up, hold him, swing him around above his head or run with him and the puppies out in the yard. J.R. was only three years old when his daddy died. You really don’t miss what you never have known ... or do you?

Grace was an attractive, young, divorced woman who managed a beauty salon in a shopping mall on Galveston Island. She was alone in the shop one evening when a tall, bearded, long-haired man entered. It was almost closing time; all week there had been warnings over the news and reports of a rapist suspect in the area. She remembers quietly reaching for a pair of sharp scissors. John needed a haircut and shave, in order to apply for an off-shore drilling job. Grace laughs when she recalls that the long hair and beard were necessary ‘props’ for John’s former work as an actor in the Passion Play in Eureka Springs, Arkansas. The man she feared might harm her that evening had been one of Christ’s disciples!!

Over several months, they would correspond and then see each other when John had shore leave. Their deep friendship grew into love and they were married. Both wanted children, John was in his early 40’s by now, and he wanted a family- he wanted roots and a sense of belonging that had been missing during his youth. Grace was unable to bear children so the couple applied for adoption from various agencies. It would be two years before J.R. would enter their lives. He was only a few weeks old, a beautiful, healthy dark-haired baby with huge brown eyes. John would proudly tell anyone within hearing distance “my son has his mother’s eyes”. J.R. was less than a year old when his daddy was diagnosed with lung cancer.

Grace and John mounted a full scale war against his cancer; books on new treatments were researched, a macrobiotic diet was strictly followed, mega doses of vitamins and minerals were consumed, chemotherapy, ‘doctor-shopping’, meditation, biofeedback, and last, but certainly not least, prayer. The tumor in his lung continued to grow, relentless to all their efforts and hopes. The tumor was resting on the spinal cord causing pressure that led to paralysis from the chest down. John required total care, bath time was painful for John and a struggle for Grace. Grace moved one of her salon chairs into their living room and attempted to keep her regular customers to offset the growing expenses. By the time the hospice team became involved with John, their savings had been depleted. John steadfastly refused welfare assistance.

John displayed a common trait among those dying, a need…almost a demand, for control. He was intelligent, and well-read, and questioned every treatment, medicine, or method of doing a procedure. You could not simply let something slide by with “That’s the way it is done”. John wanted to know why he was having certain symptoms, what could be done about those symptoms, if not, why not, etc. etc. etc. With the paralysis John was not able to empty his bladder or control his bowels. It became necessary to place a catheter to allow him to urinate. The nurses on call would frequently get telephone calls late at night. Grace would first apologize for the hour, but before she could say why she was calling, John would come on the line with numerous questions. Yes, they probably could have waited until the next morning, but he needed reassurance then, not tomorrow. I was not the only nurse to go out in the early hours of the morning to replace a catheter that had become plugged or give an enema to offer some relief. These duties were normally performed during ‘regular hours’, but John could be very emphatic about his wishes. I often caught myself thinking what I would be doing if John were my husband, they were the same age and similar temperament...would I refuse to call the nurses, put him off until morning? No, I don’t think I would have done that.

As the tumor grew, so grew the pressure on John’s spine. The pain was almost unbearable at times. Especially at night, when all the house is quiet, you can hear the wind through the trees and the hum of traffic in the distance ... the pain becomes consuming. John was taking morphine every four hours, yet he remained alert. John required increasingly higher doses of morphine, but he worried about his ability to breathe. We would adjust the morphine, using increments of 10mg per 24hours. John became confused at times, requesting another dose of morphine only an hour after having been given the increased dose. Grace would bear all this with unbelievable patience. There were times when he became argumentative, but his lack of strength did not allow him to become physically violent. The nurses could go home after an exhausting session with John, but Grace was there 24 hours a day. She was so torn between the two men in her life. There was never enough time to give to J.R. and as could be expected he acted out frequently. I think Grace cried more than J. R. when she had to discipline him.

Grace always tried to meet John’s needs, however, outlandish. She managed to get a neighbor to build the ramp in front of the porch, thus allowing John to go outside in the wheelchair. The fact that he only went out once was not important. John required oxygen, but fought the mask and would continually remove the nasal tubes. Grace would smile at him, talking gently as she would replace the oxygen. How appropriate her name ... Grace ... that was what she displayed with her dying husband.

In one poignant moment I shared with John shortly before he died, he wept bitter tears; he had finally found happiness and now it was ending, much too soon. He wanted to see his son grow into a man, his wife grow old beside him, he wanted to build a house on the land in Arkansas ... he did not want to die.

At last, John appeared to be at an appropriate level of both pain and anxiety medications, he became more peaceful, yet was still able to communicate his needs. Time was growing shorter for him and he fought dying with every breath. That doesn’t mean to imply that he was restless or thrashing. He was young; his heart was young; he didn’t want to let go. He had shared these fears with a priest, and wanted the message that smoking has contributed to his death to be told at his funeral. It would take several hours for his heart to stop beating. Grace stood at the side of the hospital bed looking at John take his last few breaths. This wasn’t the same strong, tall, handsome man she knew. There was a sense of relief when he died, replaced almost as quickly with guilt for even thinking about being so tired. She was numb, there was so much to do, no time for tears, don’t even think right now. Just get through this moment, go through the motions. The funeral was small; John’s older brother, his only relative, was able to fly down for it. Grace had some cousins attend, all the hospice nurses were there. She didn’t know how she made it through that day. Even with J.R. running through the house, screeching at the top of his lungs, the house was empty, she was empty.

One evening Grace laid down beside J.R. in the queen size bed that had been returned to the bedroom after the hospital bed had been removed. J.R. didn’t want to be alone and she was too tired to insist that he go to his own bed. Now, she was awakened by his laughter and she watched him run about with the puppies now in the backyard.

Called inside for breakfast, a smiling, bright-eyed three year old bounced into the kitchen, followed by five puppies. “Mommy, I played with Daddy”, he shouted. “We ran ... we play, he hold me up high”. He made small circles with his arms outstretched to demonstrate how his daddy had twirled him about over his head. Grace wept as J. R. rushed on to tell her with his innocent and limited vocabulary. “Daddy okay now, he not hurt.” “You gotta be a good boy and help mommy. "Daddy's here" pointing to his heart. Don’t be sad cause Daddy loves you”. Grace hugged J. R. rocking him back and forth. She knew he had dreams about his daddy and that this dream was alive and vivid to him. It comforted her to know that this little 3 year old could feel like he did and express those feelings to her.

As she started her day, she suddenly realized that the back door was unbolted at its 6 foot level. She also remembered that all the puppies had been in the closet the night before. J.R. could not unbolt the door, the latch had been placed that high to prevent such a thing, it was always locked. She asked J.R. about the puppies being outside. He looked up from his bowl of cereal and laughed “Yes, they got to play with Daddy, too. It was fun”. His Daddy had carried him high on his shoulders, outside to play and had talked before he had to go away. A dream? An exhausted parent, who didn’t latch the door? A message, perhaps? A miracle? I can not explain it anymore than Grace could, but whatever you wish to call it, Grace found the peace she was searching for and her son found his memory of Daddy.