Author’s Note: This story is for Deb who lives with the specter of Hypoplastic Left Heart Syndrome every single day. Thanks for advising me on the medical things and letting me share a little of your life with others.
Thank you: To Reagan for letting me use up her lunch hours and precious little spare time to listen to the story and do the editing for me. I am indebted. To Karen and Spikey for reading and supporting.
Feedback: Always welcome at cephalgia@hotmail.com
Part One
Chapter One
"Oh fuck, oh fuck, oh fuck..."
The chanting was only in Crystal's mind, but it became her entire focus. The sterile waiting room, with its vinyl covered seats, artificial plants and magazines from an era Crystal could not remember, faded into the background. This was not a bad thing because the waiting was always the hardest part. The seemingly eternal wait for a shred of news.
A second chant now began in her head and slowly it started to drown out the first. "Is this the day? Is this the day?" That phrase echoed a question that had been in Crystal's mind far too many times in the past six years. The question tortured her, but just for today she would be happy to hear it again tomorrow.
San Diego’s Patterson General was known for its state of the art pediatric department. She knew most everyone in the department well and they knew her. Knew her and knew Davey all too well. Crystal sat up straight in her chair and wished for the umpteenth time that she had remembered to bring a Xanax with her. Just something to take the edge off the damned interminable waiting.
Larry Hamilton, the Pediatric Cardiology Chief, entered the waiting room in his powder blue scrubs. He still had on the blue paper booties that matched the rest of his outfit and Crystal watched as he made his way toward her with hushed steps. She rose slowly to her feet. "He's doing fine, he’s on his way to the Pediatric ICU." Crystal closed her eyes briefly as relief washed over her. "We'll monitor him overnight, but if everything is stable I think we might let him go home tomorrow."
Crystal would hear the phrase "Is this the day?" again and she was ecstatic about the prospect.
***********
Watching the rhythmic rise and fall of Davey’s chest was familiar territory for Crystal. She had watched him sleep many times in the six years since his birth. Usually it was at home, but too many nights it had been in the hospital. Looking through the glass and into Davey’s room, Crystal found herself hesitating. Her mind wasn’t in the right place and Davey hated it when he saw her cry. She leaned her forehead against the transparent barrier and willed her emotions back under control. A warm hand broke her nearly meditative state. Turning, Crystal was almost assaulted by warm blue eyes.
"You can go on in, Ms. O’Brien. He’s stable and his vitals are good. I’m going to keep him on the oxygen tonight, but we’ll wean him off in the morning."
Crystal’s eyes went to the nurse’s name badge. "Thank you…Lauren…I just needed a minute. It’s a little rough sometimes." She tensed and waited for the inevitable. They said it every time.
"I’d like to say I can imagine what you’re going through, but I can’t. I don’t think anybody could really know unless they are in your shoes," Lauren said.
Crystal thought for a second she hadn’t heard right. Lauren didn’t say, "I know what you’re going through." They always say that even though they don’t have a friggin’ clue what it is to deal with this, she thought.
"Do you need to talk?" the nurse offered. "My other patient is gone for surgery so Davey is going to be my only patient for a while. I’m on until seven a.m. and they frown on us going out dancing while we’re on duty."
Crystal looked from the nurse back into Davey’s room. He still seemed to be resting comfortably. She began talking without taking her eyes from her son. "He was diagnosed with Hypoplastic Left Heart Syndrome when he was only 19 hours old. His APGAR scores were 2 and 5. Hell, I didn’t even know what an APGAR score was then. All I knew was that he was listless and kind of limp, just not moving around much and they kept needing to stimulate him. And he didn’t cry. Can you imagine that? He didn’t cry. Every movie I’d ever seen, every TV program that showed a baby being born had the baby crying. Not Davey. Not a peep." She looked at the nurse now.
"Only a few hours later he started having problems breathing. His color wasn’t good and you could see his ribs suck in each time he took a breath. He had to work so hard and he was dusky, you know? They did an echocardiogram and that’s when they found it. At nineteen hours old. He went into the Neonatal Intensive Care Unit and didn’t come out for three weeks."
"I’m so sorry," Lauren said simply, in a tone that let Crystal know the feeling was genuine and not just a reflex comment. She was surprised once again.
"I only have thirty-two pictures of Davey without a scar on his chest. That’s all." A small sound came from the cubicle Davey was in. He was moving around a little. "I need to get in there. He’s used to me being there when he wakes up from these things."
"Of course. I’ll be right in, I just want to take a quick peek at his orders again." Lauren moved to head over to the central nurse’s station, but stopped and turned back. "Regular visiting hours are just about over. Only parents can be in after that time. Should I let security know to expect your husband?"
"He isn’t in the picture," Crystal said, making an effort to keep the bitterness out of her voice.
If Lauren had any thoughts about that, her face didn’t betray it. "Okay. I’ll be in shortly."
Crystal entered Davey’s room. His face was scrunched up the way it always was when he woke up. Some mornings the look was so comical Crystal would just watch him and chuckle. She moved to the chair sitting next to the bed. Reaching out, she stroked the soft cheek of her son. One sleepy eye cracked open.
"Hey, kiddo. How are you doing? I’m so proud of you; you came through the angioplasty like a champ." Both of Davey’s eyes were now open and he was much more aware of his surroundings.
"Mom, can I play video games? I’m really not sleepy." Crystal laughed softly. She glanced up at the screen above Davey’s bed displaying his vital signs and heart rhythm.
"You’re already playing a video game and you’re kicking butt."
"I am?" he asked.
"Yep," Crystal confirmed. She looked at the monitor and numbers again. "You’ve got an 86 and that’s a darn good score."
"Cool." With a satisfied smile Davey closed his eyes again.
Lauren observed the interaction between mother and son from just inside the doorway. She had seen a lot of terrible things happen to children and their parents over the years, but this was one of the most devastating. Chances are her kid might not live to see adulthood, but look at her…she is one gutsy lady, she thought.
Clearing her throat to let the pair know she was in the room, Lauren went right up to Davey’s bedside. She spoke gently to him and in a respectful manner. So many times Davey had been talked down to and it made him crazy. At six he was almost as big an expert on his condition as many adults.
Lauren made the check of Davey’s right leg and groin, the spot where the cardiologist had entered his body for the procedure, sparing him as much embarrassment as she could. A quick check of his heart and lung sounds along with notations of his blood pressure, pulse and respirations and she was finished.
"I’ll be out at the nurse’s station, right by where we’re monitoring his heart. If he needs anything, let me know. Otherwise I’ll just slip in periodically to check on him."
"Thanks, Lauren," Crystal said quietly, seeing Davey’s eyelids droop slightly. The nurse smiled her acknowledgement and turned to leave.
"Thanks, Lauren" Davey said in a sleepy voice.
"You’re more than welcome, Davey," Lauren replied and left the room.
*********
Lauren finished giving the day nurse report and she gathered up her things in preparation for going home. The patient from surgery was not stable and had taken up most of her time during the night. Still, she had been in to see Davey every hour and was sure he was doing well and would be heading home this morning.
She slung her backpack over her shoulder and headed toward the doors of the PICU. She slowed as she came near Davey’s room and looked in momentarily. Everything still looked stable. Crystal was asleep in the chair that she had pulled up to touch Davey’s bed. Her arm was propped on the bed and her hand just touched his arm. It wasn’t much contact, but it was enough.
Good luck, Davey, Lauren thought. Then she looked over at the
blonde haired woman in the chair. Good luck to you too, Crystal.
Chapter Two
Lauren pulled into the parking space in front of her apartment. By reflex she glanced over to the space where Rachel’s car should be, but wasn’t. It hadn’t been there for nine months now, but the habit of four years was hard to break. At least the thought of Rachel didn’t bring the burning anger or crushing loneliness that it had the first month or so. When Rachel had left her, Lauren had been hurt and wounded by what she saw as Rachel’s betrayal. Now, with time and space between herself and the event, the nurse could admit that it had been a long time in coming.
Their love had been white hot in the beginning. The blind date they had met on lasted twenty-four hours and they had decided to move in together after knowing each other less than a month. Neither had raised the question that it might be a bit hasty to take up living together. In time, passion had been replaced by complacency and relationship for companionship. They had been less lovers and partners than roommates, so when Rachel met another woman and fell in love with her, it had been understandable. Understandable a couple of months later, Lauren thought wryly.
She pulled the three plastic bags of groceries from the passenger seat and headed for her apartment. Two flights up, twenty-two steps; she knew each one by heart. Fumbling with her keys as she juggled the packages and her backpack, she managed to get the door open just as an orange and white blur flashed past her and into the apartment.
"Cripes, Ram, you scared the hell out of me! I’ve got to get you a bell, that’s for sure." The tabby had silently followed her up the stairs and was now perched on the back of the sofa, waiting anxiously while attempting to look nonchalant.
"You don’t fool me, fuzz face, I know you know what’s in the bags. For the life of me I don’t know why you like the stuff." The nurse walked into the apartment, kicking the door closed with the heel of her trainer. She dropped her backpack and took the plastic bags into the kitchen.
"You’re not even going to ask me how my day went?" she asked the cat. "No wonder they say a dog is man’s best friend. You’d think that we were only passing acquaintances instead of me being your meal ticket for the past three years."
Lauren thought back to the day she first encountered the cat. She and Rachel had been leaving the hospital on a blustery November morning. It had been Lauren’s regular night to work, but Rachel had been called in to scrub into a trauma case in the O.R. After an exhausting night for them both, they had been walking to Rachel’s car when a noise interrupted their conversation. A soft mewling emanated from under the loading dock next to the hospital’s back exit.
They had both stopped, but it had been Lauren who had decided to crawl under the concrete deck to check out the source of the sound. What she found there had broken her heart. A female cat and three kittens had made a home under the shadow of the hospital. The mother was dead, as were two of the kittens, trauma by the look of the older cat, a car or something like it. The two kittens had apparently starved to death after their mother died and Lauren marveled at the maternal instinct that gave the cat the strength to make it back to her kittens at all.
The third kitten was still alive, though it looked to be in bad shape. It barely had its eyes open and wobbled around on thin legs. The orange fur was matted and dusty, but its lung power was still strong as the frantic mewling that was produced when Lauren picked it up testified. She emerged from under the loading dock as dusty as the kitten was, cobwebs gracing her dark brunette hair.
"Lauren Cook, you’re filthy!" Rachel said as the nurse emerged. Her heart melted at the sight of the bedraggled kitten though and, after alerting the maintenance department about the dead felines, they took the kitten to the vet and then home.
Several nights of feeding the kitten by dropper and letting it sleep on their new heating pad paid off. Soon the kitten was a chubby bundle of kitten energy and the day Lauren described it as "Rambunctious" was the day it got its name.
Lauren returned to the present and took a can of Seafood Splendor out of the bag. Pulling back the lid she got a strong whiff of the contents. "Seafood Splendor? This smells like a very bad day on Fisherman’s Wharf!" Reluctantly she inverted the can over a clean bowl and set it on the floor. "Bon appetite, it’s your funeral."
Ram dropped his air of indifference and scrambled from the sofa to come to a skidding stop on the kitchen floor directly in front of the bowl. Lauren watched as the cat became absorbed in his meal. There’s no accounting for taste, she thought and then laughed at herself. Yours wasn’t too great either, girl. You thought Rachel and you would be together forever. You should have seen that you and a scrub nurse would be all washed up one day. Groaning at her own pun, Lauren put away the rest of the groceries and wondered if she would get used to the silence in the apartment anytime soon.
Probably not, she thought as she picked up the remote control and snapped on the television.
***********
"Turn off that TV! You’re going to be late for the bus and I’m not driving you to school again!" Crystal yelled down the hall to her son who was being his usual reluctant self when it came to school. "I’m not kidding!" she added for good measure. She stood in the kitchen and continued packing Davey’s lunch as she glanced up at the clock again.
Why is every morning like this? she thought. I have to practically use a crowbar to pry him out of the house. Maybe it would be different if his dad were around. A bitter taste found its way to Crystal’s mouth at the thought of Sean O’Brien. It was an understatement when I said, ‘not in the picture’ to that nurse the night Davey had his angioplasty. What was her name anyway? The moniker escaped her, but the memory of warm blue eyes popped immediately into her mind. If, okay…when, Davey has to go back in there, I hope she’s his nurse.
Sean’s image intruded again and pushed away the more pleasant one. She returned to her task and dropped the peanut butter and jelly sandwich she had been making into a plastic bag and then into a brown paper bag where it joined an apple and a pudding cup. She turned to call out the time to Davey, but was startled to see he was standing behind her, fully dressed and ready for school.
"Geez, Davey, you scared the crud out of me! Wow, look at you though, all together and ready for school."
"Except for this," Davey said, leaning forward slightly and staring down in consternation at his left shoe. Even before her eyes followed his, Crystal knew what she would find and suppressed the laugh that threatened to bubble up from inside. She peered at the shoe. Sure enough, there it was.
"My God!" Crystal gasped in faux horror. "It’s a knot the size of Cleveland! Again!"
"Dumb shoe," Davey said, his eyebrows knitting together. "Hey, you usually say it’s the knot that ate Cleveland."
Crystal shrugged. "Have you got something against trying something new?" She reached out and brushed an unruly lock of hair off of his forehead, but it promptly fell back onto its place of origin. He needs a haircut, she thought.
"I bet those new Nikes we saw at the mall wouldn’t do that," he hinted.
"For ninety-five dollars those shoes had better be able to tie themselves," Crystal grumbled as she bent to unravel the tangled laces. She worked silently while she remembered the look on Davey’s face when he’d seen those shoes. If her raise at the bank came through and the water heater held up, she’d be able to get the Nikes for him for his birthday.
"Alright, Buster," she said as the last recalcitrant string came loose on Davey’s shoe, "that takes care of that." She re-tied the laces and stood. "You just need to take your meds now and I’ll walk you to the bus stop."
Davey made a face at the prospect of this next morning ritual. Climbing onto a chair he retrieved five bottles of pills from the bottom shelf of the nearest kitchen cabinet.
"Jerry Minter told a couple of the kids at school that I take drugs," he mentioned as he brought the bottles to his mother.
"He did, did he?" asked Crystal. At Davey’s nod she said, "Well you tell Jerry Minter you take medicines, not drugs." She took one pill each out of the first four bottles. Lasix, Digoxin, Vasotec and Aspirin, the medications Davey needed each day to ease the workload on his damaged heart and optimize the function of the heart muscle he did have. "And you can also tell him if he keeps saying things like that about you, he won’t be welcome to come over and play with your X-box."
Davey had been the first kid in the neighborhood to have an X-box and it had been quite a coup. The electronic game system was courtesy of Sean in yet another example of how he confused being Santa Claus with being a parent. That’s a great comparison she thought as Davey swallowed the pills with half a glass of water. Santa and Sean…they both visit once a year and bring presents. Davey finished the pills and Crystal allowed him to pick out which of the colorful, chewable vitamins he wanted from the fifth bottle.
"Okay, sport, go grab your jacket and backpack and let’s beat feet. I don’t work banker’s hours, you know. Oh wait a second, yes I do too." Davey giggled at his mom’s foolishness, but ran to where his jacket and backpack waited for him on the arm of the couch.
Crystal returned the bottles to the cabinet, knowing that they, with the exception of the vitamin, would repeat that ritual later in the evening. Twice a day, like clockwork. It was little enough price to pay, she supposed, to keep Davey as healthy as possible. Looking at the bottles she thought about Jerry Minter’s words. Stupid kid. I guess it shouldn’t bug me though; half the adults I meet don’t understand about Davey’s problem either. Shaking her head, she closed the cabinet.
"You got your homework?" Crystal asked as Davey returned and started slipping on his jacket. She retrieved his lunch and put it inside the backpack.
"Yep, everything is in my notebook." He snatched up his backpack and raced for the door. "Let’s hit the trail, snail!" he laughed as he headed out the door.
"That’s my line," Crystal laughed as she followed after him.
*********
"So he went back to school today?" Trish asked when they had a lull between customers. Trish had worked at Kingston Savings Bank with Crystal and had been her closest friend there for six years.
"The doctor said he could go back when he felt like it and he was tearing around the house yesterday, so I figured he felt like it…whether he knew it or not!" Crystal paused for a moment to take a deposit from a longtime customer. "Have a good day, Mrs. Anderson," she said as she handed the woman her receipt. "He kept up with what they did in class though. Mom and the babysitter took turns working with him on his lessons."
Crystal closed her cash drawer as she turned back to Trish. "I was scared this time. Really scared. He was short of breath, his lips were blue and he was getting tired so easily. I called Larry Hamilton and he got him in for an echocardiogram right away. You know he has one of those every six months with his routine check-ups and there were changes on this one from the last one. His oxygen levels had dropped too. He needed another angioplasty of his aorta."
"Did you let Sean know Davey was in the hospital?" Trish asked. She opened a roll of quarters into her drawer after noticing she was getting low.
"Yeah, but he gave me the usual song and dance of how he knew I could handle it and how squeamish he is around all that medical stuff. You know, Trish, Davey doesn’t even ask for him anymore. The last three times Davey was sick, Sean didn’t bother to call him. Big jerk."
The tellers were busy for the next few minutes when two merchants from the neighboring businesses came in with their daily deposits. When their business was completed, Trish picked up the conversation where they had left off. After working in the bank for so many years, they were used to interrupted talks.
"He’s still keeping Davey on his insurance, right?"
"And that’s all he’s doing. He doesn’t pay alimony or child support. Could I have been any more naïve when we got divorced? Sean convinced me that providing the insurance for a child with Davey’s heart problems was going to be a terrible burden on him. Does the ‘sucker’ sign still show up on my forehead?" She pointed to an area just under her short blonde bangs.
Trish laughed. "No, I’d say anybody would be hard pressed to sucker you in anymore. So what’s Davey’s prognosis now?"
Crystal was quiet a moment. "In the short term, better than before by
having the angioplasty. In the long term, it’s the same as it has been
since he was born. Sometime before adulthood he’ll need a heart transplant
or more than likely Davey is going to die."
Chapter Three
The waiting area outside Dr. McMichaels’ office was tidy and comfortable. The small leather settee and overstuffed chair seemed to belong in the den of a gracious country home rather than the setting of a college professor’s office at a big city’s university. Lauren felt welcome and she never minded the time she spent there.
The door to Dr. McMichaels’ office opened and a bookish young man with a backpack, accompanied by a gray-haired, gray-bearded, distinguished gentleman, appeared in the opening.
"You’re well on your way to getting through your student teaching, Alexander. You hang in there and you’ll be through the program in less time than you think."
"Thanks, Dr. McMichaels," the gray-haired man said. "I appreciate you talking this over with me." He took the backpack from the young man and made his way across the waiting area and through the outer door.
"Lauren," Dr. McMichaels said as he beckoned to the nurse. "C’mon in."
Lauren grabbed her bag that was emblazoned with the logo of a well-known drug used to treat male erectile dysfunction. She had gotten it as a freebie at a continuing education course on urological problems and she loved carrying it for the stares she got when out in public. Following Dr. McMichaels into his office, she took her usual seat across from the oak desk he settled behind. The office would have resembled any other academic milieu except for the small collection of Stars Wars figurines placed carefully along several shelves of a nearby bookcase.
"So Lauren, have you decided what your Master’s thesis is going to be about yet?" the professor inquired.
Lauren fidgeted a little and decided to hedge. "Well not exactly, but I’ve narrowed it down some."
Randy McMichaels leaned back in his chair and steepled his fingers. "I’m going to give that response a big 9.5 on the bullshit scale," he said thoughtfully.
For a guy who looks like the President of his high school Chess Club, this guy can sure cut to the chase, Lauren thought.
The professor continued. "When you came here for the first time two months ago, I asked you to fill out a few papers. Do you remember that?"
Lauren nodded, but wasn’t sure what he was getting at. She didn’t have to wait long to find out as he reached for and opened a file folder that had been sitting on the two-drawer file cabinet to the right of his desk.
"Question number one was simple. It asked, ‘Why do you want your Masters Degree?’ Do you recall what you wrote?" he asked.
"That I wanted to make changes in the running of the Pediatric and Neonatal ICU’s and that if I was to do that, I needed to be in management. To be in management, I need my Masters Degree," she summarized.
"Is all that still true?" he asked.
"I suppose so," she replied. Dr. McMichaels had very discerning eyes and every time Lauren looked into them she felt as if she had been strapped into a lie detector. "Yes," she admitted, "It is."
"Question number two," he continued, "Asked about the three biggest obstacles to you doing your Master’s work." He glanced down at the paper again. "You said, ‘time enough to do the research, money to finance it and finding a subject I can feel passionate about.’ Does that sound familiar?" Lauren nodded.
"Correct me if I’m wrong, Lauren, but I believe you’ve adjusted your schedule and decreased the amount of overtime you’re working to deal with the time issue. You’ve also been approved for a University stipend to assist you in getting the research done. Two out of three."
"Meatloaf says that ain’t bad," she interjected weakly.
"Humor at this point is entirely inappropriate," he said in a mild rebuke.
I wonder if he knows how much he looks like a young Bill Gates? Probably not, she thought. "Sorry," she said contritely.
"Look, you are obviously having problems with this so I took the liberty of calling the director of the nursing program on campus to see if she had any suggestions to offer. She told me about a new service of the department. They have a bulletin board where they post all the faxes and flyers they get that pertain to nursing. There are internships, continuing education offerings, support groups, requests for caregivers and things like that posted. I’d like you to go over there, take a look at what’s on the board and pick something…today. When you’ve decided, you can call me with your choice."
Lauren was trapped and she knew it. She accepted defeat gracefully and agreed to Dr. McMichaels’ instructions. Maybe it is time I get the ball rolling on this; God only knows why I’m procrastinating.
She headed out across the campus of Coastal Pacific University. It hadn’t been that long ago when she had joined a sea of excited and anxious faces as a transfer there. She had already received an Associate’s Degree with her nursing program in Texas and now she had completed all the requirements and received her Bachelor’s Degree at CPU. She loved college and learning which only made it more curious that she was having a difficult time starting on a project so important to her.
Lauren opened the door to Brookins Hall, the building that housed the nursing program. The new bulletin board was easy to spot and it was loaded with papers both tacked and stapled in place. Every phase of nursing was represented, but Pediatrics was Lauren’s specialty so she concentrated on the papers dealing with that subject.
An orange paper caught her eye. It was a notice listing the monthly meetings of a support group for parents, families, friends and caregivers of children with congenital heart anomalies.
The next meeting is scheduled for two days from now, she thought. There’s got to be a Master’s Thesis in there somewhere.
Pulling her cell phone from her bag, she dialed the office number of Dr. McMichaels.
*********
"Mom, hurry up! We’re going to be late and then I won’t get my favorite!" Davey called to his mom. He was already in the back seat of Crystal’s 1996 battered minivan with his seatbelt on as she was closing and locking the front door of the house.
Crystal had thought seriously about not going to the support group meeting this evening. The minivan had given her more than its usual share of problems, sputtering and dying at stop signs. She couldn’t afford an engine overhaul and hoped Trish’s husband, Perry, would agree to look at it and patch it up one more time. Then her boss had called in with the flu causing her to have to handle branch business between her own customers.
Ordering currency had been a hassle with lost faxes and then the ATM machine ran out of money on her lunch break. Must be nice to have a bank account hefty enough to draw out a couple of hundred, she thought. Crystal’s budget was tight, but she was making her payments on time. She never got behind on the bills, but she wasn’t making much headway either. When Crystal’s cash drawer didn’t balance at the end of the day she knew she was cursed and decided she just wanted go home, pull the covers over her head and stay there until the next morning. It took her half an hour to find the thirty-five dollar deposit she hadn’t entered into the system and it was when she was double-checking the calendar to see if it was Friday the 13th that she realized the support group meeting was that evening.
Crystal had never been a whiner and initially she was reluctant to attend a group where she thought everybody would be doing precisely that. She didn’t have a clue how wrong she was. Now she found strength in those meetings and, though the day had been hellish and nothing was more tempting than to just stay in, she knew once she got to the meeting that those things would fade a little and life would seem manageable again.
Climbing into the mini-van, Crystal looked up into the rearview mirror and teased her son. "The shoe’s on the other foot when it’s someplace you really want to go."
"Mom!" Davey said in exasperation, dragging the three-letter word out to about four syllables. Crystal laughed, started the minivan and backed out of the driveway. The support group meeting was held in the local community center and childcare was provided which was the reason Davey wanted to go early. There were a small number of Sony Playstations for the kids to use and Davey had cut his out of the herd early on.
Crystal could admit she enjoyed the evenings as much as Davey. The group was small, usually about ten to fifteen people attended, and Crystal could deal with that. In larger groups she tended to hang back and listen, but rarely contribute. There were six children involved with the group with various forms of congenital heart defects, but Davey was the only one with Hypoplastic Left Heart Syndrome. It helped to hear how other parents and caregivers coped with the stress and listen as they shared their stories with one another. As grave as the conditions were, the stories were just as often humorous and interesting as serious and informative. You never knew what you might hear. The group was also a conduit for information about treatments, research and breakthroughs, something a single parent like Crystal didn’t always have the time to investigate herself.
The community center wasn’t far from Crystal’s house and it wasn’t more than a few minutes before she pulled into the parking lot there. Davey was out and running for the door practically the moment the car came to a stop.
"Davey! Walk!" she called after him. He slowed down a little, but his rapidly moving arms and legs were doing a good imitation of an Olympic race walker.
"The Playstation?" a voice asked as Crystal slid out of the minivan.
"Like always," Crystal replied to another member of the group. Patsy Cohen was a sixty-seven year old woman who began taking care of her granddaughter when her heroin-addicted daughter was sent to prison for violating her probation.
"Just like always," Patsy said, pointing to her granddaughter who had joined the stiff—legged competition. The girl, Sydney, had cardiomyopathy, an enlargement of the heart muscle caused by an infection in her bloodstream when she was a baby. The drug-addicted daughter had delayed taking her child to the doctor and by the time she had, the bacteria had reached the infant’s heart. The result was a flabby, ineffective heart pump and another unfortunate child whose family needed the support group.
Crystal shut the door to the mini-van and took an armload of books and papers from Patsy. In retirement Patsy had more time on her hands than most of the parents in the group and at an age when the remote control on the TV might have been the most technology she would have to deal with, she had embraced the world of the Internet and online communication. She volunteered to be the secretary for the support group and printed up a monthly newsletter containing the best data from researchers, suggestions and interesting postings from the several different chat groups she belonged to as well as updates on members of the group and their families.
"I swear, Patsy, you are amazing. Look at all this! I can’t wait to see what’s in The Beat this month." The Beat was the name of the newsletter Patsy put out and the title was a clever play on words she had come up with. Crystal and the spry red-headed grandmother began walking to the community center. "I think I want to be you when I grow up," she said.
That caused Patsy to laugh. "Trust me, no you don’t. It’s not half as much fun as it seems to be. Besides, you’re not turning out half bad like you are and Davey looks to be following in your footsteps."
Crystal pulled open one of the double doors to the community center and allowed Patsy to precede her inside. "It’s hard, you know, to walk that line. I know in my head that Davey’s condition is serious and part of me wants to baby him, but another part of me knows that my parents didn’t raise a brat and I don’t want to either."
"I know what you’re talking about," the older woman said as they walked
down the hall to the multi-purpose room where the meeting was held. "Let
me tell you what happened the other day…"
Chapter Four
The chairs in the support group meeting were set up in a circle and it was easy for Lauren to slip in to the back of the room unnoticed. She took a seat and watched as the meeting progressed. There didn’t seem to be a real moderator, but several natural leaders were evident. The older red-haired woman spoke quite a bit and what she had to say surprised the nurse. She reported in some detail on medical studies that Lauren had barely heard of.
A couple in their early thirties was attending the meeting apparently for the first time. The woman was probably six months pregnant by Lauren’s estimation and their unborn child had already been diagnosed in vitro with a severe birth defect. It wasn’t a heart defect, but the parents-to-be wanted to talk to parents and caregivers of children with special needs. What they received was an honest account of what daily life was like when your child had a serious illness.
One blonde woman in particular articulated the problems and challenges she faced very well. She doesn’t feel sorry for herself or ask for anybody else’s pity either, Lauren thought. And she never lets you forget that no matter how tough the grind is, it is all worth it. Lauren felt a sense of déjà vu as she watched the group meeting come to a close. She felt certain she had met the speaker before, but seeing so many patients in the hospital and other students at the college, she couldn’t remember where. The mystery was cleared up when the door behind Lauren opened up and two children burst in chatting about how well each of them had done on a video game.
The girl Lauren didn’t know, but the boy she recognized immediately. She had last seen him lying flat in a bed in the Pediatric Intensive Care Unit. Davey…his name popped into her mind with ease and when he walked up to the blonde haired woman, she also gained a name in Lauren’s mind. Crystal, of course, the nurse thought. She looked so upset that night watching Davey through the glass. So that’s what she looks like on a regular day, when the weight of the world isn’t on her shoulders.
Davey’s clinical history came rushing back to Lauren. Hypoplastic Left Heart Syndrome, not the rarest heart defect, but certainly one of the most devastating. The agony in Crystal’s words that night was evidence enough of that. Lauren watched as Davey went up to his mom and leaned a little against her.
"Tired?" Crystal asked her son.
"A little," he replied. "Can we get ice cream on the way home?"
Crystal considered the request. "I don’t think a quick stop at Dairy Queen will hurt anything. Hot fudge sundae sound good?"
"Yep," Davey answered, a second wind breathing new life into his sails.
Watching quietly, Lauren marveled at how normal an existence it seemed the mother and child had when she knew the situation had to be anything but normal. God, I wonder what it’s like living with the specter of your own child’s health and life hanging over your head everyday. I wonder… It was at that moment Lauren decided to ask Crystal if she and Davey would be the subjects of her thesis. But how do I ask someone to put themselves and their kid under a microscope?
Taking a deep breath, Lauren headed over to the group that was becoming smaller by the minute as the members left. Crystal turned to pick up flyers and handouts spread across a table at the front of the room. Lauren took the opportunity to approach her.
"Crystal? It’s Crystal, right?" The blonde turned to see who was talking to her; the voice sounded familiar.
"Yes…Lauren. How are you?"
The brunette was surprised Crystal would remember her. It had been less than one full shift in the hospital that she had been Davey’s nurse.
Crystal laughed at the expression on the nurse’s face. "You have several patients a day, but Davey only has a couple of nurses each time he goes into the hospital. I think it would be just a bit easier for me to remember you. I’m surprised you remembered my name. What brings you to the community center?"
Lauren didn’t confess to racking her brain to recall Crystal’s name. "I’m actually here for the same meeting you attended. I didn’t want to intrude so I kind of lurked in the background. It was really interesting though; I learned a lot."
"Do you have somebody in your life with problems like these?" the teller asked. She stacked the last paper and handed them to her son. "Davey, take these over to Patsy. We’ll be going in a minute." Davey headed over to where Patsy was gathering her things as well.
"No," Lauren replied. "And from what I heard here tonight it’s obvious there’s a lot I don’t know about what goes on everyday in the lives of these kids and their families. I heard the things you told that couple tonight. They were looking for exactly what you gave them and I’d just like to tell you that you did a great job. You covered technical points without getting technical and emotional points without getting emotional. I was amazed."
Crystal smiled. It was the kind of smile you couldn’t help but respond to and Lauren thought of the phrase, "people person". It applied to Crystal O’Brien. Trusting her instincts that this was the perfect subject for her thesis, Lauren plunged ahead.
"Look, I came here tonight for a reason. When I see kids like Davey in the hospital, it’s when things are pretty serious. We are so busy being in the process of doing repair work and getting kids through a rough patch that we lose sight of the fact that living with these kinds of problems doesn’t end when the doctor writes the discharge order. Your group showed me tonight that living with a child with a severe heart defect is a twenty-four hour, seven days a week proposition. I don’t have any children and I would guess parenting is like that anyway, but you have…‘parenting plus’ for a lack of words to describe it. I don’t think until tonight that it hit me how big a job you really have. I don’t think most of us at the hospital realize it either and I’d like to fix that. We need some perspective, some insight, into what it’s like everyday for you."
Crystal had listened to Lauren’s words carefully. "Okay, I can agree with you on that. It would be helpful to both sides if the hospital personnel realized that we deal with our kids everyday. We’re your best asset and yet sometimes I’ve been made to feel like I was in the way. I mean, I can’t do an angioplasty, but I know how to keep Davey still and not scare him when there are some pretty scary things happening to him."
"Right!" Lauren said. "I want you to be seen not just as a parent, but also as a caregiver and part of the team. Maybe knowing your point of view could do that."
Crystal shrugged. "Okay, the support group might be a little crowded some nights, but the more the merrier I guess."
Lauren hesitated here. "I was…I was thinking of something a little more in depth and a little more personal."
"Such as?" Crystal asked warily. She knew there was more coming.
"I’d like to write my Master’s thesis on the daily life of a family with a child with a serious heart defect. I’d like to write about you and Davey."
"Whoa now," Crystal said, putting her hand up in a halting gesture. "I don’t want to be like the subject of some reality show where every time I turn around a video camera or something would be in my face. I deal with the public all day long; I don’t want to go home at night and hang around with Big Brother. Besides, video cameras make my butt look big. Ask anybody; Crystal O’Brien plus video camera equals big butt. No thanks." Lauren did a swift assessment of Crystal’s body. There wasn’t any way on God’s green earth that her butt would look big, video camera or not.
"It’s not like that," she explained. "No video camera at all. It would be just me, you and Davey. I’d take notes and maybe use a tape recorder for interviews, but I don’t want this to be intrusive in the least. That would defeat my purpose of letting the medical community see your everyday life." Pacified on the video camera point, Crystal was willing to listen a little more.
"What kind of commitment are we talking about here?"
Lauren hadn’t really considered that far ahead. "Maybe a couple of hours a couple times a week and maybe one observation session a week?"
"Spell out what that means. What happens during those times?" Crystal’s tone was edged with the suspicion of a mother bear protecting her cub.
"Just talking for the first kind of session. I’d like some background of course, a picture of your daily life and maybe a little of the emotional side of things as well." She watched for any reaction to the last request. If Crystal would find it difficult to talk about her feelings and emotions, it wasn’t apparent now.
"And the observation session?" the blonde probed.
"Just that," Lauren assured her. "I observe. No interference or involvement in your life." The nurse thought about the two thousand dollar grant she had available for the thesis. "I can sweeten the deal a little. There was a small stipend I received to help me get this done. I’d be happy to let you have it for your time and cooperation."
Crystal thought a second, her eyes darting to Davey and back again to Lauren. The nurse felt as if she were being tested in some way at that moment. She must have passed.
"Okay, lets do the ground rules," the teller said. "Three times a week for two hours each for the talking. Once a week you can hang with us and watch. No video cameras and I get to read what you write before you turn it in."
"That’s perfect." Lauren could hardly believe her good luck. Here was a subject she could get interested in. The people involved seemed like nice , the mother not unpleasant at all to look at.
"I have one more condition," Crystal said, thinking of the Nikes Davey had set his sights on. "My minimum price for putting my life on public display is ninety-five dollars. This isn’t negotiable; take it or leave it."
Lauren made a show of thinking it over. She’d find a way to get the blonde to take more of the grant money later. "You drive a hard bargain, Crystal. I’ll take it."
Davey wandered up to them then, anxious to be going for his ice cream.
Crystal reached in her backpack and tore a small piece of paper from a notebook there. Scribbling hurriedly, she gave the paper to Lauren.
"That’s my number. Call me tomorrow after six and we’ll set some days up." She gathered her things together and started to leave, but turned back to the nurse before she left. "I hope it won’t break any rules if I get to know you too, Lauren. You can’t have too many friends, right?"
"Absolutely," Lauren replied, thinking again how "people person" described the blonde. "I’ll talk to you tomorrow." The nurse walked over to the red-haired woman who had spoken of new research during the meeting while Crystal and Davey left.
"Mom," Davey asked as they left. "Who’s that lady?"
"That," his mom replied, "is our shadow."
Chapter 5
Lauren’s yellow Mustang slipped out of the strip mall and easily into the early Tuesday evening traffic. She had given herself plenty of time earlier to get to the place Crystal had designated as the spot for their first meeting. Davey would stay with Patsy, the name Lauren was told, of the red-haired woman who spoke at the support group meeting.
Though Crystal had said she would take part in the thesis work, she had never said where that work would take place and before a stranger came to her house, she was going to be checking things out thoroughly. Lauren admired the teller’s careful ways. The world could be a dangerous place and no amount of caution was excessive.
The nurse pressed down on the accelerator and the Mustang responded. The plenty of time she’d had earlier had evaporated to barely enough time at Trippin’. Ramon had been her hairstylist for six years and he did a great job, but there were days when Lauren was subjected to hearing about every drama in his life. Today had been one of those days. Ramon was worth it though; he was a magician with a comb and scissors. If Lauren was looking for a change to her hairstyle, all she had to do was sit herself in Ramon’s chair and say, "Go". She had done that today and Ramon was so happy he launched into a lengthy update on his life as he worked.
Lauren should have expected it. She had found out Ramon was a bit different from the first day she met him. The sign for the new hair salon caught her eye on her way home from work one morning. Walk-ins were welcome and she dropped by on her next day off. Ramon greeted her effusively as she entered. He invited her to take a seat in his chair, but after glancing at the price list she was too shocked to sit.
"If you think I’m paying fifty bucks for a haircut, you’re trippin’," she said. Ramon laughed and was so amused he eventually changed the name of the business from Ramon’s to Trippin’. He also dropped Lauren’s haircut price to thirty dollars.
The wind blowing in through the window of the Mustang ruffled the hair at her collar. The shorter hairstyle was flattering and a lot more comfortable. Her longer hair had been nice while she had it, but Lauren was feeling the need for a change. Maybe it was getting started on her thesis at last that had prompted it, but she just knew some things needed to be different.
Lauren pulled into the parking lot of the Public Library exactly at seven o’clock. She hadn’t been in one in years, but she figured they were essentially all the same. She entered and the happy feeling of being around the stacks of literature returned to her as if she was still a kid in grade school. She remembered wandering through the walls of books looking at the fiction. It wasn’t until she got into high school that she found out that the kind of fiction she was going to respond to wasn’t going to be found on the shelves of the Public Library. The "Public" in Public Library didn’t seem to include her.
The nurse walked through the main part of the library and into a different kind of section that hadn’t been in the ones she had seen before. The large room was labeled "Conferences". It consisted of small groupings of plush chairs around circular tables. Several of the seating areas were occupied by what appeared to be groups of students with textbooks and backpacks open on the tables. Conversations were happening in normal speaking voices, but the set-up of the room made it seem like a much lower noise level than it would have been usually.
Lauren saw Crystal motioning to her from an area with two seats near the back of the room. The blonde was dressed much more casually in jeans and a pullover shirt; Lauren surmised the dressier attire she’d had on at the meeting were her work clothes. The brunette found she was looking forward to getting to know the other woman.
"Lauren Cook, I owe you an apology," Crystal said as the nurse took a seat. "This is my peace offering." She pushed one of two bottles of Diet Pepsi toward Lauren. "You were carrying one the other night at the support group, so I hope it’s what you drink."
"It is," Lauren said in a voice laden with confusion. "What’s the apology for? You didn’t do anything to me." She sat in the chair across from the blonde.
"I was suspicious of you," Crystal admitted. "I checked out everything you told me on the phone the other night. I talked to Dr. McMichaels at Coastal Pacific, I checked on your employment with the Human Resources Department at Patterson General and I even looked up to see if there were any problems with your nursing license on the Board of Nursing’s website. Except for not being listed in the phonebook, you check out completely."
Lauren raised her eyebrows. "I’m so relieved. I was starting to worry about myself, but if you’re willing to vouch for me I must be okay." Crystal laughed at Lauren’s joke, but the nurse could still sense some tension in the other woman. "Would it help if I told you about me first?" Crystal nodded and Lauren knew she had guessed right.
"I talk to people all day long; I’m a teller at Kingston Savings Bank. I know a little about my customers and they know my name, but it isn’t anything like this. Even when I speak at the support group it’s because I’ve been around most of them for over a year."
"And now you feel…exposed?" Lauren asked.
"A little," Crystal said shyly. Lauren wondered if she knew how much she resembled her son at that moment.
"Okay, well, what can I tell you about me?" Lauren said, tapping her chin. "I rose from the sea foam riding with my long flowing golden hair wrapped around me. No wait, that’s Venus. I get us mixed up all the time." She looked to see how Crystal responded to her feeble attempt at humor.
"You’re attractive I suppose," Crystal said with a straight face, "But wouldn’t you find all that goddess business just a bit overwhelming? I mean, you could never go out for a gallon of milk without putting on your make up and just forget about wearing sweats to cover up the fact that you’re a little overdue on the old leg shaving."
We’re going to get along just fine, Lauren thought. "I suppose you’re right. No point having a day off if you don’t get a day off."
"Know what’s scary?" Crystal asked. "I followed what you just said. By the way, speaking of upkeep on your looks, I like the new hairstyle. It’s flattering." Lauren was pleased the other woman had noticed. Female attention was something she hadn’t had much of lately, but she reminded herself the woman was straight and brushed the compliment off gently
"Just time for a change I guess. Well, let me stop putting off the introduction thing. I want you to know I’m really sacrificing here…I hate talking about myself." She tried for doe eyes. Crystal said nothing; she wasn’t letting the nurse off the hook.
"Okay, fine." My full name as you probably already learned from the Board’s website is Lauren Rosemary Cook. I’m 34 years old and I’m originally from nowhere." She clarified that last statement. "My dad was a Captain in the Army and we moved around a lot when I was a kid. I was born in Frankfurt, Germany and we lived in a couple of different countries and a bunch of different states. When my parents retired in Texas though, I knew we’d be going separate ways. We’re pretty close, but after going to college, getting through nursing school and working around the area, I realized I wanted something else. My parents raised me to be independent and when the opportunity came up to move to California, I took it. I came to San Diego because they offered me a pretty generous relocation bonus and tuition assistance to get my degree." She paused here to take a sip of her drink.
"I started at Patterson General in the Adolescent Health Unit and moved to Pediatrics and the Pediatric Intensive Care Unit six months ago. I have an apartment by the water, a cat by default and a real wish to hear your story and not mine anymore."
Crystal sat quietly through the short biography, her green eyes never leaving Lauren’s face. "You didn’t mention anybody special," she said. The statement was made with genuine interest and not tabloid nosiness.
"I broke up with somebody a couple of months back. Not much in the way of romance since then." Lauren deliberately skirted the issue of her former partner, not knowing Crystal’s attitude toward homosexuality and also not feeling it was anybody’s business but her own.
"Sorry," Crystal sympathized genuinely.
"No need to be sorry. Hindsight is twenty/twenty, right? If it was meant to be then it would have been. They’re happy and I’m okay. Works out all the way around."
"Another woman?" Crystal asked. Lauren nodded in the affirmative. "That’s rough. At least yours headed toward something, mine walked away from everything." A bitterness tinged Crystal’s words that the nurse hadn’t heard before.
"Something you want to share?" she offered.
Crystal broke eye contact, crossed her arms and looked down. "My ex, Sean, bailed on me just after Davey was born. You know what they say, ‘When the going gets tough, the tough get going.’ I just didn’t know he’d go with his suitcase, clothes and the TV set." The teller tried to make her last words sound light, but Lauren could almost feel the hurt and anger still there. Maybe when she got to know Crystal a little better, she’d feel comfortable asking her to tell the whole story.
"So, have you been in San Diego long?" Lauren asked, tactfully changing the subject. The look of relief on Crystal’s face was plain.
"Born and raised. There aren’t many of us natives, but we’re happy ones. The ocean, the weather…what’s not to love? I guess I couldn’t see any reason to go anyplace else."
Lauren removed a spiral notebook from the backpack she carried and started taking notes. "I’m going to use your first name and last initial. It’ll be the same for Davey. You okay with that?"
"Why not?" the blonde replied. "It will be my fifteen minutes of fame. I’d hoped to have that by winning a new car as a five time champion on ‘Jeopardy’, but I suppose I can settle for this." She opened her own bottle of Diet Pepsi and took a drink.
The next hour and a half was spent getting details of Crystal’s background, her job and family. The conversation was easy and didn’t always stick to the topic. They found themselves discussing politics and local concerns as much as sticking to the original point of the meeting. Neither Crystal nor Lauren minded though; both women were surprised at how effortless it was to talk to each other.
"I suppose we should talk about the elephant in the room," Crystal said at one point.
"Davey’s heart problem?" Lauren asked, knowing that was what the blonde was talking about. She wasn’t ready though to give up the luxury of just sitting with and talking to someone so damned likeable.
"Not yet," Lauren said. "We’ve got plenty of time to get into that. Tonight, I…" She was at a loss for words to describe how she felt.
"I like you, too," Crystal supplied. "It’s weird. I’m usually shy around new people. I mean, in my job it’s easy to be outgoing…on the outside. With you it’s on the inside too." She frowned as she found her own words inadequate.
Lauren gave a small laugh. "Want to know something scary? I followed what you just said." She knew Crystal would recognize her own words.
Crystal laughed and blushed. "Listen, I want to tell you something. Earlier, when I was talking about Sean…"
"You don’t have to explain," Lauren interrupted. She was interested in what had happened with Crystal’s marriage, but didn’t want the teller to feel obligated to share it.
"No, it’s not like that really. I am still pissed off at Sean, but not for me. He left Davey when Davey could have used another parent, another set of arms to hold him and love him. Sean pops into his life every now and again, but not in any meaningful way. Sorry if I let that anger come through."
"No problem," Lauren assured her, finishing the Diet Pepsi she had been sipping on for quite some time.
"I just want you to realize the way it is…was, really. Sean and I …it’s hard to explain. Do you know how some people make a pact that if they don’t find anybody by age forty, they’ll marry each other?" Lauren nodded.
"That’s the way it was with us, but I guess neither of us found anybody by age twenty-five and we panicked. I thought marrying a friend would be fine, because that’s all he ever was to me, but it turned out that he sucked in that department too."
She deserves better than that, the nurse thought.
Crystal pondered a moment. "He was the best of the lot as far as I was concerned though. Guess when it comes to guys I have no luck whatsoever. You?"
"Not much," Lauren conceded. That much is true. Crystal seemed to be waiting for the brunette to add to the comment and Lauren was reconsidering if she should talk about her sexual orientation.
"THE LIBRARY WILL BE CLOSING IN TWENTY MINUTES. PLEASE BRING ALL ITEMS NEEDING TO BE CHECKED OUT TO THE MAIN DESK AND RETURN ALL AUDIO-VISUAL ITEMS. HAVE A GOOD NIGHT," a disembodied voice stated over the loudspeaker.
Crystal checked her watch and was amazed that two hours had gone by so quickly. "Guess that’s our cue." They began to collect their things and head for the door. They detoured to drop their plastic pop bottles into a recycling bin and it was then Lauren noticed a display table loaded with books and pamphlets. The texts covered many different aspects of being gay and lesbian in today’s society. The books investigated history, sexuality and politics. There were even volumes of fiction and poetry in the mix.
Crystal saw the direction of Lauren’s gaze. "Never would have seen those books in the library when I was a kid," she said matter-of-factly. Lauren cringed internally.
"It’s about time the Public Library caught up with the rest of the world," she added. Lauren was relieved she hadn’t been wrong about her friend.
"Hey, you want to come over to my house on Thursday for the next session? I think Davey would like that and I make a mean chocolate chip cookie," Crystal offered.
"Sold."
End of Part One