by Jim Bradford
As Pearl walked into the NICU early one morning, just days after HK’s birth, one of the nursing staff quietly motioned her to the hallway. Pearl had already noticed more than the usual gaggle of medical staff huddled around HK’s crib. The nurse presented her with news she was not prepared to hear—overnight he had developed a bleeder deep within his brain. On a grade of one to four, it was the worst kind, a grade four. At this point surgery was not an option, and there was scant hope he would survive either way, so they bombarded him with antibiotics, scanned his brain multiple times daily, and waited. Pearl hoped and prayed for a good outcome, but raw intuition led her to fear otherwise. Over the next four days, she returned home only to shower and change clothes. On the fifth day head scans revealed that the bleeding had stopped and the volume of blood was starting to dissipate. This time Pearl cashed in a miracle. But years later this stroke-like episode was identified as the likely culprit behind her grandson’s paralysis and the underdevelopment of his body’s right side, coupled with an eventual diagnosis of cerebral palsy.
Surviving that episode, the premature baby boy displayed unprecedented improvement, allowing doctors, nurses, and Pearl the rare opportunity to exhale, filling the bright hospital room with fragile optimism. With the crisis over, doctors discontinued the steady drip of IV antibiotics. But two days later he descended into severe respiratory distress. Hopes of unfettered improvement faded like a new pair of jeans.
Doctors diagnosed HK with patent ductus arteriosus, or PDA, a life-threatening heart condition and the most common heart problem in premature infants. Pediatric specialists intricately described HK’s latest malady as a prenatal passageway failing to close. This condition prevented normal blood flow to his newly developed lungs. Again, all surgical options were off the table, and his survival odds sank with every passing hour.
Doctors restarted the antibiotic drip and moved HK to a high-oxygen environment, hoping to buy time for his frail body to withstand delicate heart valve surgery. Their gut medical instincts turned him around, and within a month he was strong enough for the operation. Heart surgery proved successful, but doctors later discovered that his monthlong exposure to a high oxygen concentration had caused retinopathy of prematurity (ROP), the abnormal, disorganized growth of fetal blood vessels in the eye, resulting in retinal detachment and blindness.
Pearl finally brought her tiny grandson home on October 11, 1990. Her compassionate gas company supervisor allowed her flexible working hours long before the concept was in vogue. But she still had to work, which meant she desperately needed extra hands to help with the baby. Jimmy, her younger son, had fallen into hauling loads just like his daddy and was constantly on the road driving cross-country. Besides, he saw it as his older brother’s responsibility to be at home helping with his infant son. Eventually William landed a decent steady job working for an airport parking company, enabling him to live in Nashville, but he was of little help. His unpredictable rage and bipolar-like personality made him unfit for anything except an occasional diaper change or fetching baby food from the refrigerator. Help and an extra pair of hands finally arrived when Pearl’s ailing mother came to Nashville for a week. She ended up staying two years.
CHAPTER 9
Sunday’s Child
A month after HK left the hospital, Pearl’s life reached a tolerable equilibrium. Still, they were no strangers to the pediatric intensive care unit. HK’s weak lungs could not handle bouts of bronchitis, pneumonia, or asthma. During one stretch he would not eat and became weak and jaundiced. After batteries of tests, endocrinologists finally diagnosed a dangerous thyroid deficiency that would require a lifetime of drug therapy. Throughout his extended stay in the NICU, multiple surgeries, follow-up emergency hospitalizations, physical therapy, and intensive counseling, HK received nothing but world-class medical treatment from the extraordinary professionals at the Vanderbilt University Medical Center and Children’s Hospital. Quite simply, he would not have survived without their exceptional level of care, and Pearl was profoundly grateful that almost all of his massive medical expenses were covered by government-funded health care programs.
As HK approached eighteen months old, a time when most babies have taken their first awkward steps, he struggled to be mobile, but his paralyzed right side prevented a normal crawl. Undeterred, he compensated by adapting a sideways scoot, like a slithering sidewinder, which seemed to work just fine. Like every other toddler, he moved wherever he wanted, only a little slower and in his own distinctive style.
Scooting on hardwood floors, even a short distance, was tough on his tender skin, so Pearl addressed the problem by creating a four-by-ten-foot playpen. Fashioned from a rubberized exercise mat about two inches thick, it served as a soft cushion and gave him plenty of room to maneuver. She placed three white plastic bins, containing diapers, baby lotion, powder, and other baby supplies, on the floor next to his playpen.
One evening while Pearl and her mother washed the supper dishes together, her mother sensed a desperate need to lighten her daughter’s spirits. Among her jewels of wisdom was one that offered a dose of realism mixed with hope: “Life is never as good as it looks or as bad as it seems.” Pearl thought that sounded about right. As they talked on, sharing two lifetimes of struggles, they suddenly realized the house had gone unusually quiet.
Terrified of what the tiny baby might have gotten into, the two mothers frantically rushed into the living room. The scene that greeted them was one they would never forget. HK had slithered around the playpen and discovered the mysterious cache inside one of the white plastic bins. Somehow he had managed to open the bin and, to his unfathomable joy, encountered a giant-sized jar of Vaseline.
The sight stopped both women in their tracks. Not only had HK found the Vaseline, but he had somehow managed to pry open the lid and cover himself head to toe in glorious globs of the gooey mess! The unfamiliar sensation must have been especially soothing because his tiny hand had plunged into the jar over and over until it was empty. Mother and daughter began laughing so hard they cried. Any attempt to speak resulted only in more uncontrollable fits of laughter. They sorely needed comic relief, and they got a hefty dose of it that evening. Pearl described the scene to me, saying, “He looked like a large melted candle in the middle of his playpen.” Determined to remember the rare happy moments alongside the truckloads of regrets, she used her old Polaroid camera to forever capture the melted candle that for one unforgettable night adorned her living room floor.
Despite such moments of comic relief, life was anything but easy. Pearl’s trouble-ridden past—and struggles with not being a morning person—contributed to her belief that the start of a new day never brought anything good. And now her future looked every bit as bleak as her past.
The philosopher Mother Goose described Pearl’s future this way:
Monday’s child is fair of face,
Tuesday’s child is full of grace,
Wednesday’s child is full of woe,
Thursday’s child has far to go,
Friday’s child is loving and giving,
Saturday’s child works hard for a living,
And the child that is born on the Sabbath day
Is bonny and blithe, and good and gay.1
She explained her take on the little rhyme: “HK is a Sunday’s child, and I’m a Wednesday’s child. I have to work every day to overcome my tendency toward a negative attitude.”
And overcome it she did. From HK’s first day home, she consciously avoided placing a cold, dark cloud over her grandson. Instead, she opted for the warm sunlight of positive reinforcement and unrelenting encouragement. “Fake it till you make it” became her constant mantra. Every morning she welcomed him with “Good morning! Isn’t it a wonderful day?” She manufactured happiness and optimism, even when her world continued crumbling around her.
Pearl managed to struggle through a life she never asked for by facing a future the only way she knew how—one day at a time. And she did it with un
daunted courage and determination. A passing inquiry about her day always generated the same standard reply, oozing with a thick slice of unadulterated sarcasm: “Lovely, lovely, lovely!” But Pearl Derryberry carried one genuine trait that required no manufactured facade, no disguised agenda. She had gumption, and she had it in spades.
1. {PoemShape (blog), “Monday’s Child Is Fair of Face,” September 21, 2013, https://poemshape.wordpress.com/2011/01/01/mondays-child-is-fair-of-face/.
CHAPTER 10
Reality Sets In
As we talked one particular Saturday, Pearl gently lowered her guard and told me a little more about William, HK’s father. Though he was worse than useless in caring for his son, he had stayed in Nashville for five years after the accident. “Then,” she said, “one cold February morning when HK was five years old, William stopped by the house before heading to work in Columbia. I hate pumping my own gas because the fumes make me sick, so I asked if he would follow me to the Par Mart convenience store just around the corner and put gas in my Toyota pickup. He’d done it occasionally because I’d pay to fill up his old, run-down truck too. He topped off his vehicle after filling mine and then walked around to my window, leaned in, and with a snarky grin on his face, stammered, ‘Well, I’ll see you later.’ We haven’t seen or heard anything from him in almost ten years. He truly got the jump-and-run gene from his daddy.”
Through the years our restaurant visits also yielded sensitive personal information about her immense struggles and HK’s disabilities. By default she had become proficient at managing the countless medical issues that plagued HK, including cerebral palsy, thyroid deficiency, asthma, blindness, seizures, slight brain damage, and limited use of his right arm and hand. His left leg grew one and a half inches longer than his right, which caused a pronounced limp. She lovingly referred to his right arm as “his chicken wing, because when he walks it flops up and down like a bobble-head doll.”
Over time Pearl had learned to administer HK’s daily prescription regimen, including drugs to maintain thyroid function and control seizures, allergies, and acid reflux. He required two breathing treatments daily to minimize asthma attacks and, at bedtime, gel in both eyes for moisture. He will require a lifetime of caregiver assistance to perform basic daily functions such as toileting, bathing, dressing, eating, and walking. “He would be a handful for anyone,” she confided.
Pearl explained the multiple surgeries, some successful and some not, HK had endured since birth. Eye specialists were initially optimistic that his blindness could be corrected through surgery, providing him with limited vision. But the attempts were unsuccessful. And after consultation with world-class eye experts, including Nashville’s Dr. Ming Wang, Pearl was presented with the devastating news that the damage was irreversible. HK would be blind for life. Pearl counted his lack of vision as one of her biggest disappointments for HK. “It would make all the difference in the world if he could see just for a minute. How do you explain colors to someone who has never seen them?”
His ongoing medical care included twice-a-week visits to the children’s hospital for occupational and physical therapy. And this did not count the occasional emergency room visits for asthma flare-ups or severe colds that could easily degenerate into pneumonia.
Pearl also revealed to me the multiple mysteries about his drab attire—which I had noticed rarely changed, regardless of the seasons or outside temperature. His black grandma-looking shoes had bewildered me from the start. She explained in her matter-of-fact style that each of his feet was a different size and so tiny that he could only wear a woman’s-sized shoe. The size difference required buying two pairs of shoes at once. She offset the added expense by purchasing herself a pair at the same time and in the same style as his. Thus this shrewd lady snagged a quantity discount with the simultaneous purchase of three matching pairs of women’s shoes. Practicality never took a backseat with Pearl. HK wore shorts every day because they slipped on easily over his braces, and the long, white cotton tube socks that stretched almost to his knees protected his tender skin from irritations caused by the braces.
Though the reality of the facts was difficult to process, it all finally made sense. But it still troubled me deeply to think of what they had been through and how they had struggled to maintain even a shade of normalcy.
CHAPTER 11
Borrowing My Eyes
Increasingly, I became a substantial part of HK and Pearl’s social circle. I clearly sensed that she worried about her grandson’s future and transition into adolescence. Our tableside conversations were sprinkled with subtle hints of apprehension about the next phase of his life, displaying her deep concern that he had no positive male influences to guide him. At age nine he was emotionally drowning, and I sensed that she was hoping I would become his life preserver. The desperation in her steel-gray eyes pierced me to the core. She seemed to be crying out for help, looking for a mentor, a man to guide her precious grandson along paths she could not travel. Still, I was surprised when one Saturday afternoon she threw out a shockingly unsolicited offer.
“It would be fine with me if you ever wanted to take HK away from the restaurant for a short time. I think he’d really enjoy it as well. I know he’s very lonely and bored just sitting here all day.”
I jumped on that opportunity like a trout on a mayfly. I turned to HK and said, “Boy, that’s great! I can always use a weekend helper!” The smile on his face sealed the deal.
We began exploring the Brentwood area and enjoying time together just doing fun things that men and boys do. On some Saturdays we ordered huge chocolate milk shakes at the local Sonic Drive-In while on other days we shopped at B & C Ace Hardware. He enjoyed “assisting” me with weekend errands that often included grocery shopping, getting an oil change, washing the car, or getting a haircut. It never mattered what we did or where we ended up during those early days together. Everything was new and exciting for this sheltered young boy.
HK relied on me for almost everything, and his safety was paramount in my mind. I used every possible precaution, especially when assisting him as he walked with his halting gait or insisting that he buckle up when riding in my car. He reminded me regularly to fasten our seat belts. Sometimes I wondered if he knew the role that seat belts had played in his mother’s fatal car wreck. He always prompted me to buckle up. Who needed an incessantly dinging seat-belt alarm with HK in the car? Once, he leaned toward my face and sternly announced, “Mr. Bradford, click it or ticket!” The Tennessee Highway Patrol would be happy to know that its latest radio public service announcement had been such a big hit, at least with this pint-sized listener.
During excursions away from the restaurant, HK gushed with questions about everything under the sun. I knew little boys were naturally inquisitive, but my nine-year-old blind friend’s curiosity was off the charts. Riding down the road, he would constantly ask, “Mr. Bradford, what are we passing? What do you see on both sides of the street?” When I told him the color of his clothes, he enjoyed challenging me with questions, such as, “Mr. Bradford, what does white look like?” Being a sports fanatic, he asked, “Mr. Bradford, will you read me the sports page?” Weeks later he could still recite those articles almost verbatim, but at the time I was having too much fun to give that odd little phenomenon much thought.
I became his play-by-play announcer whenever we attended local sporting events, quietly whispering the on-field action in his ear. We were having the time of our lives. I was his master teacher, and he was my dutiful student. Within months I began to notice fewer questions and more two-way conversations with my small passenger. We were slowly making progress. He wasn’t just attempting to make conversation, he was using my eyes to see, and that was just fine with me. He could borrow them anytime.
One weekend I hatched a plan that resulted in a first-time experience for both of us. I knew HK had grown accustomed to the meals at Mrs. Winner’s, but I was equally confident that he had not ventured far beyond the typical fast-food typ
e of restaurant. My plan was to expose him to a casual dining experience with a special attraction for kids—something beyond what the major fast-food chains offered. Based on our previous visits to Sonic, I knew he loved chocolate milk shakes. Without knowing exactly why, my mind settled on Steak ’n Shake, the retro ’60s-style diner famous for steakburgers and thick, frosty milk shakes made with hand-dipped ice cream. It was an easy fifteen-minute drive down Interstate 65, and I thought it would be the perfect spot to enjoy our first meal away from Mrs. Winner’s dining room.
“Have you ever eaten at Steak ’n Shake?” I asked.
“No,” he responded matter-of-factly.
“Do you like hamburgers?”
“No, I don’t like hamburgers.”
Surprised at this response, I asked, “Are you sure you don’t like hamburgers? I thought all boys liked hamburgers.”
“I’m sure. My Grammy told me I don’t like hamburgers.”
(Following up later with Pearl, I learned that she had, in fact, told him multiple times that he did not like hamburgers because the tiny food particles from the meat patty would stick between his baby teeth and irritate his gums until she could floss them.)
By this time I had thought so much about enjoying a delicious hamburger at Steak ’n Shake that I was craving one. Not wanting to delay lunch while hunting for another restaurant, I resorted to a bit of shameless subterfuge.
