Fred Dickey's Island of Human Drama
POISED UNDER DEATHLY FRAIL SON’S TIGHTROPE IS ONE RARE MOM
POISED UNDER DEATHLY FRAIL SON’S TIGHTROPE IS ONE RARE MOM
By Fred Dickey Sept. 8 and 9, 2014
The human currency that never inflates, never deflates and is never counterfeit is a mother’s love. It buys bosomy comfort in infancy, patience in adolescence, courage in crisis and support when wings are tried at the edge of the nest. Some mothers are better than others, but few are bad.
It’s all true. Just ask the person who has one.
Did I mention sacrifice? Well, I shall …
Angelica Valentine and her son, Bill Bostick, are a small family under siege in their walk-in-closet Encinitas apartment. It is not apparent because they tend to keep their troubles to themselves. She is a pleasant woman of 64 with a smile as sweet as a macaroon. He is a tiny, fragile man of 43 who has spent his entire life on a tightrope at the edge of the abyss.
They are more pleasant than their journey.
Young mother Angelica would bolt wide-awake, not to a sound but to silence. She would tiptoe to her only child’s crib and listen for a breath.
“I would look down, and I would put my hand on his little chest and hope that it would rise and fall.” She would say to herself, “Please let him be breathing, please let him be breathing.”
Sometimes, breath would be as thin as an angel’s sigh. One instance, she was just in time to pick the baby up and felt no heartbeat, but that movement got his heart started again.
“That could have gone on only for seconds. It was just a miracle that I got up and checked on him.”
She did this every night, sometimes several times a night in her Florida home.
The doctors had told her that “it was likely I would go in to check on him one morning, and he would have taken his last breath.”
It didn’t start out that way. William Philip Bostick was born in October 1970 to Angelica and her Air Force husband. He weighed a little more than 6 pounds and seemed healthy.
No, he wasn’t: “My son was born with a two-chambered heart. I was told only 3 percent of babies born with that would live to be 5 months old. The center wall of his heart was missing completely and there was a hole between the upper chambers and a hole between the lower chambers.”
At 2 months, she had noticed he didn’t seem able to suck milk out of his bottle, although he had gained 4 pounds. One doctor said she should just put a larger hole in the nipple and that would take care of it. She did, and it improved his feeding, but she also observed a transparency to his skin. He wasn’t particularly lethargic, but with a mother’s instinct, she took him to a pediatrician who told her something didn’t see right. So he scheduled tests.
Results in, the doctor delivered the bad news about Billy’s heart in a funereal voice he wasn’t able to disguise. He said the 4 pounds of weight gain was all water, and it was all right around his heart. When they got rid of the excess water, he returned to his birth weight of 6 pounds.
Doctors attempt to put a good face on bad news, but some things have to be confronted. They all thought Billy was — frankly — as good as dead.
Not only was the future bleak, but Angelica had to face it all alone. Her Air Force husband couldn’t cope with the tragedy that had struck his family.
“He rejected both of us. It was very hard for me to think that somebody I married could feel that way, but he made the choice to not be involved in my son’s life.”
Not only that, but the marriage turned “extremely” abusive for both mother and child, she says. As Billy grew, always slower and smaller than the other children, his father started to physically abuse both of them.
“When Billy was about 5, his father would hold him with one hand and hit him with the other. Billy’s whole body would shake.”
How does someone strike a child with a bad heart?
“That was my question,” she says. “I’m like, ‘How are you like this? Where does that come from?’ ”
Was he a heavy drinker?
“No, he wasn’t. He just couldn’t deal with the situation and he turned his anger toward us. He did that for years.”
Angelica says her religiously rigid family strongly opposed divorce and she relented to them for 10 years, but finally enough was enough and she divorced him. Fortunately, her son received dependent military insurance for life.
For Angelica, the struggle was just beginning. Billy required constant care, which was job No. 1 for her. In between time, she enjoyed success as an artist and gallery operator. Billy was on daily doses of potent digitalis. Angelica had to listen to his heart to make sure the rhythm was OK before giving him the medication.
“One day in 1972, I suddenly heard something that sounded like crashing waves in his chest. It was caused by blood from the defective heart that was being pumped at high pressure into his lungs, and the lungs were being destroyed.
“We not only had his heart disease, now we had lung disease. I traveled the country going from medical center to medical center, looking for someone who could help with that. And it turned out they all said it was impossible that he would ever have surgery.”
When Billy started school and would become stressed, his two-chamber heart would go into “superventricular tachycardia,” an extreme irregular heartbeat. When that would happen, his heart could race from a normal rate of, say, 70 beats per minute up to the measuring limit of the machine at 355 beats, Angelica says.
In 1981, the first successful heart-lung transplant was done by surgeon Bruce Reitz of Stanford University. From that moment, Angelica saw the operation as the only realistic hope to keep her son alive.
Angelica threw herself into a quarter-century campaign to get Bill approved for the surgery. Along the way, she pushed her way through the brambles of insurance foot-dragging, hospital approval and then trying to be patient amid the lack of suitable donors.
A final obstacle was Stanford’s refusal to proceed until she had almost $150,000 in the bank to cover extra expenses during the long recovery. She obtained that by selling their Florida home.
Finally, on Aug. 15, 2007, Bill Bostick, 36, spent 23 hours on the operating table to receive the heart and lungs of a 23-year-old person; name, residence, cause of death, even sex, were withheld from Billy. All he knew was that because someone died, he might live.
Tuesday, Part II: For Billy, heart disease and heartache.
SICKLY SON STILL IN THE GAME DESPITE HAND NOBODY WANTS
By Fred Dickey Sept. 9, 2014
Part II: On Monday, Angelica Valentine of Encinitas and her son, Bill Bostick, who was born with an extreme heart defect, told how Bill lived for four decades knowing that each day could be his last. Finally, he underwent a rare heart-lung transplant operation that gave his life a future, and gave hope more than a gasp.
For Bill Bostick, the odds have always been threatening because he has always been a long shot. He was born with two chambers of his heart instead of four. And if that weren’t burden enough, the defective heart put such pressure on his lungs that they also sustained ruinous damage. His mother was told that only 3 percent thus afflicted lived.
Bill is a small man, 5 feet 2 inches and under 150 pounds. He’s quiet, polite and well-spoken, if sparingly. He has a head of bushy black hair and a smile that picks its spots because much in his life doesn’t deserve one. His body is almost boylike. He doesn’t have the musculature of a man of 43. His body was too busy fighting to stay alive to build muscles.
Growing up, his father beat him, and after Angelica booted her military husband out, she had to provide Bill’s care as an artist while also trying to pay expenses.
As he entered school, Billy was by far the smallest child, but that was the least of it. Because of the disease, his skin had a transparent sheen and a blue tint, and his fingernails were purple. The ends of his fingers were bizarrely disfigured because of poor circulation. To other children, he walked around with a “tease me” target on his back.
He was picked on because of his size and coloring. The bullies found him as bees find nectar. “I remember kids asking if they could see the holes in my heart,” he says.
But worse than the kids, Bill and Angelica say, were the educators in the eastern schools he attended. Because teachers obviously feared he might die at any time in class, he was denied participation in many school activities.
Bill, what was the worst experience you can recall?
“There are so many that I couldn’t …”
Give me the worst.
“I will say being confined in the classroom by my teachers and not being allowed to go to the lunch room or to play at recess. I was basically ostracized.”
In high school, he could only attend a pep rally if his mother came to school and accompanied him. The same with proms. The only dance he attended was with a family friend as a date. But also in the entourage was his mother, who was required to be at his side.
To be fair, perhaps teachers were acting on the advice of their own medical counsel, but that wouldn’t have made Billy feel better.
In this day of disability laws and protections, especially in California, it seems incredible that an afflicted student could be poorly treated, but Angelica says it’s a different world back east and in the South. She went to lawyers for help, but discovered they viewed representing her complaint as lots of work with little reward.
Angelica says, “I’m not a bitter person, but even though Billy received excellent grades, he was typically placed in special-ed classes with the orthopedically handicapped and slow learners.” As a result, his high school diploma is marked “special education,” she says.
Having inherited his mother’s art talent, Bill yearned to become an animation artist, but lack of high school credentials prevented a start to the necessary education, he says.
I ask Bill about the father who abandoned him years ago and with whom he has had occasional contact.
Have you ever told him you love him?
“I’ve tried to.”
How did he respond?
“He shows no emotion.”
He probably feels enormously guilty.
“He’s too wrapped up in himself for that.”
But you keep trying. Why?
“Because there’s part of me that doesn’t want to be one of the 11 million in this country whose fathers do not want to be a part of their lives.”
Bill’s heart-lung transplant surgery was done in 2007 at Stanford Hospital. After surviving the early-stage infection and rejection attacks on his body, Bill and his mother were told that the climate in California most salubrious to his condition was coastal San Diego. That brought them to Encinitas.
Bill takes 35 pills each day, and sometimes he doubles up on dosages. All of that takes money, and has consumed the nest egg from the sale of their Florida house.
Bill and Angelica are broke. They live in a 400-square-foot, one-bedroom apartment that costs $1,000 per month. Because caring for Bill is a full-time job, Angelica is employed by the state “in-home supportive services” program for taking care of her son. The state’s rationale is that it’s cheaper to pay her than for more professional services.
From that job, she earns about $2,000 monthly. After rent takes half of that, the remainder must pay for food, clothing, transportation and you name it. Oh, and it must also pay for all of Bill’s meds that insurance won’t cover. That has to come before even the rent.
To stay eligible for the in-home program’s income limits, Angelica can’t even apply for Social Security.
Their old car finally died, so to get Bill to medical appointments or to shop for the cheapest groceries she can find, Angelica is at the mercy of whatever friend is willing to drive them.
She is also bound by the strictures of Bill’s vulnerability. Every germ that we laugh off is a danger to him. A common cold could be fatal. Sitting in the stands at a Chargers game would be foolhardy.
“We are month-to-month desperate,” she says with the stoicism that years of tough living have hard-baked into her character.
Without getting bogged down in mortality tables, Bill knows a long life is probably not in his future. Because he has fought for survival every day of his life, the threat of death is no stranger to him. He’s looked death too often in the eye and has seen it blink.
(Bill’s story of his battles and his tribute to his mother are at californiadreamerbill.com.)
In the lives of Angelica and Bill, a spin-off of an old bromide might read: That which doesn’t kill me makes me desperately poor.
In the health care of today, a cure is often the thing you can’t afford.
Currently, mother and son strive to eke out a living without desperate want.
However, considering what Angelica and Bill have overcome, it’s tempting to say their money problems are no comparison.
But that’s not exactly true. Poverty is a different dragon. No pill can reduce its symptoms. No cure is prayed for from Big Pharma. Short of winning the lottery, there are no miracle recoveries. And what poverty was yesterday might be worse tomorrow.
If it’s true that God never gives us more than we can handle, He must think these two are pretty damned tough.
Fred Dickey’s home page is freddickey.net
His email is [email protected]
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