FAMILY COURAGE HASN’T WANED AS TRIALS MOUNT
By Fred Dickey
Dec. 16, 2013
You’re idling at a school function, people-watching as you wait. A family catches your eye, and you exchange small talk. Turning away, you’re warmed that such a nice family would be so blessed: the father, quiet and friendly. The mother, cheerful and open. The little boy, bubbly and talkative. The daughter, sweet and showing promise of growing into a head-turning beauty.
But blessed? You would walk away and never know the truth about the Ricos.
Traci Rico smiles because that’s how she’s wired, but she knows smiles don’t lift burdens. A happy face tricks others into thinking everything is just fine.
Tony and Traci Rico live in a modest-but-nice apartment in Cardiff. It’s one they’ve had to strain to afford, but they do it for reasons other than mere location.
The Ricos have two children: Tanner, 8, and Pria, 12. They’re nice kids — respectful, with good attitudes and solid values. I guarantee, they’re not spoiled.
Last month, Traci, 45, the family’s sole financial support, was laid off from her midlevel accounting job, a good one that paid $65,000 a year. In a small company, if a key contract is lost, jobs are sure to follow. For employees, it can be the long walk out the door with the cardboard box and … “I’m sure you’ll find something.”
Losing a job is a deal-with-it reality these days, but the disruption it caused this family was one more stone added to the weight already trying to crush them.
Another stone was the news that trials of an experimental drug they believed was helping Tanner have been suspended, along with the hope they had invested in it.
And then, Traci just had a mammogram scare. Apparently a false positive, but still another small stone. When your support structure is sagging, even a pebble makes it creak.
There’s more …
Six years ago, Tanner was diagnosed with Duchenne muscular dystrophy (DMD). The disease is caused by a gene mutation that deteriorates the muscles and results in the victim being wheelchair-confined by about age 12. It ends in death, usually in the early 20s.
It’s that condition that the new drug, drisapersen, was purposed to help. But the medication has been a disappointment, at least to the Food and Drug Administration, so trials have stopped.
Today, Tanner can stand and walk, but only for short distances on flat surfaces, and never can he risk being jostled in a crowd. Otherwise, he’s wheelchair-bound.
He’s a happy little guy who makes the best of his condition, as when the family arrived for a group photograph and discovered that a flight of stairs had to be climbed. His mother carried him up, and when it came time to leave, she paused at the top, and said, “Do you want to be carried or scoot?”
Tanner said, “Scoot,” and then sat down on the top stair and slowly, cheerfully, bumped his way down on his behind.
And yet, more …
Pria has a disease called recurrent respiratory papillomatosis that’s caused by the human papilloma virus. It’s not generally progressive but makes up for that by being angrily aggressive. It causes wartlike tumors to grow repeatedly on the larynx — the voice box. Sometimes, it spreads down the trachea and into the lungs. If not removed frequently, the tumors would expand and eventually kill Pria.
The condition gives her a whispery, hoarse voice.
She has to have surgery through the mouth under general anesthesia every four to six weeks and has just completed her 55th operation (that’s 5-5). It takes a couple of weeks for her to recover, just in time to prepare for the next surgery. There’s a 50-50 chance the disease will go away when she reaches maturity, but her mother said it seems to be getting slightly worse.
Pria is in junior high, the toughest stage of adolescence. That’s when self-consciousness is an egg teetering on the psyche, and insecure kids can project their angst onto others by bullying. Because of her “strange voice,” she makes an easy target.
And there’s even more …
Tony, 51, is a proud man brought low by a misfortune stronger than his pride. Heavy lifting in his family’s Fallbrook nursery business led to a bad back that eventually resulted in three herniated discs. When a spinal disc is damaged, it rubs like sandpaper against nearby nerves. He’s got three discs busy doing that.
Traci says, “Tony can’t be on his feet for more than 10 minutes before he gets shooting pain down both legs. He’s in lots and lots of pain.”
When the family business closed, Tony’s employment prospects were slim to grim. Check for help-wanted ads seeking injured men in their 50s. They’re in the same column as elephant trainer and blind bartender.
If that weren’t enough, Tony was in the hospital five times two years ago with diverticulitis and hereditary pancreatitis that at one moment had death rattling his door knob.
As their troubles grew like a pampered child’s wish list, Tony and Traci took stock and decided that one of them would have to be a stay-at-home parent because of the kids’ needs.
Since Traci had the better earning power, Tony was nominated. That was fine until Traci lost her job. Then, Tony thought of looking for work despite his limitations. He soon realized his job prospects were what he thought they might be. Besides, he would likely quit once Traci landed a new a job, and he’d have to tell that to any prospective employer.
Although they could find cheaper housing elsewhere, the family would like to remain in Cardiff for the sake of the kids.
Traci explains that other parents of DMD children have told her stories of their kids being teased and bullied, and receiving little help from their schools. The support Tanner has received in Cardiff from teachers and students has made her family’s rent struggles worthwhile.
However, where one lives becomes secondary when the concern is having any place to live, and that’s the Ricos’ dilemma at the moment. Traci says the rent is paid until the end of December, and beyond that, there is no money.
She also is worried about insurance. She and Tony are on a COBRA extension obtained when her job ended, but it costs $1,000 per month and is paid only through this month. Tanner is covered by Medi-Cal, and they are applying for Pria as well.
Until Traci’s unemployment benefits kick in, their only income is Tanner’s Supplemental Social Security payments.
“We’re drained, yep. Everything’s gone. That’s why I have to find a job,” Traci says, both as a determination and as a hope. “I’m living on faith right now. God never promised it would be easy.”
The family’s pastor, Orville Stanton of North Coast Calvary Chapel, says the family’s faith has never wavered. “One of the most courageous families I know. With all their problems, they’re always showing concern for others. … The kids? With their medical problems, they have their moments, but they’re doing well. They’re nice kids.”
Tony is occasionally ill-at-ease with his reality. The Hispanic culture he sprang from imprinted on him that a man takes care of his family. Period. But tradition can’t stand up to a spine that has knives embedded in it.
Because of the tenuous family situation, doctors have advised against surgery for Tony. Instead, he’s trying epidural injections. Those are iffy and temporary, but you go with what you’ve got.
As the house-husband-caretaker designate, he’s a bargain. When Tanner has to be driven to school, Tony is behind the wheel, and when they get to school, he finds someone to help lift the heavy wheelchair from the trunk. When Pria has to go in for another surgery, and then another, he’s there in the waiting room.
Poet John Milton wrote, “They also serve who only stand and wait.” I’m sure if Milton were to do a rewrite, he would remove “only.”
Pria sits at the table and works on a 12-year-old’s balanced meal of pizza and chocolate ice cream. For the moment, she can just eat and doesn’t have to talk. The ice cream must feel good on a throat that a couple days ago had a scalpel down it.
She’d had this accursed affliction since age 5. All the surgeries she’s endured have created scar tissue that made her voice box lose elasticity. Pria squarely confronts her condition and the family’s money dilemma, but when asked about teasing, her face flushes and she looks uneasily at her father across the table. He returns the look and tears well in his eyes.
Her face answers the question.
Pria’s refuge is gymnastics. On the balance beam, she doesn’t have to talk, and performance is all that’s commented on. She has a scholarship through the Encinitas YMCA and is on its team. The other gymnasts are her core friends, along with her church youth group. Even though a fall temporarily knocked her teeth back into the roof of her mouth and her foot has been broken twice on the mats, she soldiers on.
Her mother says of Pria, “She’s one of those kids who will fight for the underdog, whether it be family, a stranger or a kid at school. Afterward, she’s going to come back to us and cry and let all her emotions out.”
Being dyslexic does not cause Pria to back away from her studies, but to double down on them. On the scale of her challenges, dyslexia has the weight of a fly. Her mother says, “She has to work extra hard, and she does without complaining.”
Traci, do you think she might be a little depressed?
“I don’t know that she’s depressed. She’s stressed. She struggles with anxiety. She does worry. She worries about her brother. She worries about her dad. She worries that I lost my job. So she worries, rightfully. She’s got a lot on her plate for a 12-year-old.”
Do the kids get into “Why me?”
“She did early on. At about surgery No. 30, she went through a little ‘Why me?’ Our minister was there and said to her, ‘Well, why not you, Pria? Let’s talk about this.’ They did, and I have not heard a ‘Why me?’ since.”
Pria says matter-of-factly: “There’s a possibility I’ll suffocate,” explaining that on occasion her airway has been reduced to the size of a pea.
Her education into the plight of her brother came cold and fast. “This boy called one time, and he told me what my brother’s outcome would be. I denied it — ‘That’s not true!’ I hung up the phone and ran away. I was in denial, but then I asked my mom if it was true, and she said it was.”
How does it affect you, the troubles your family is going through?
“I try not to think about it. I try to block it out of my mind. But sometimes I go to my room and just stare and I just ask: ‘Why me? And why my brother?’”
Pria says her ambition is to be a child psychologist so she can help kids like her brother.
Do you ever fight with your brother?
“A little,” she admits, which might be the most generous concession ever given to any little brother.
Traci tells of a time watching TV when a discussion about DMD came on. Tanner came into the room, so she started to change the channel. But he said, “No, stop. They’re talking about me.” Afterward, he asked about the disease and mortality. Traci avoided a direct answer.
Tony says, “We both believe he knows but chooses not to directly acknowledge it.”
“Tanner told Tony and me one day that he made a bucket list,” Traci says. “We asked what that was, and he said, ‘It’s all the things I want to do before I die.’ Then he said, ‘Don’t worry, mom and dad. I know I’ll probably die before you and you’ll be sad, but don’t be, because I’ll be with Jesus.’
“As a mom, it’s crushing me, but I have to be able to love him where he’s at. We ask him why he says things like that, and Tanner will usually say, ‘I don’t know,’ and then he’ll tell us he wants a peanut butter sandwich. So it’s just random things that come out of his mouth but are somewhere in his mind.”
I wouldn’t want him to have the truth confirmed from anything I write.
“I’ll make sure he’s not aware of it.”
The little guy hangs tough. Tony says, “We have our moments and our pity parties that may last a day or two, but then Tanner will say something funny and snap us out of it.”
Traci, what happens Jan. 1 when the rent and all the other bills come due?
“I don’t know. I honestly don’t know.”
The Ricos don’t walk across our thoughts without leaving footprints. Fairness, we have learned, is the least fair thing in life, and the Ricos have seen little of it. Their plight is extreme, yet it’s as close as tomorrow for the rest of us.
The cliché would be to compare them to Job of the Old Testament. However, Job got his money back, his ailments were cured, he didn’t lose his job and he didn’t have rent to pay. He didn’t have to explain to two children why life can be meaner than the worst bully on the playground.
The Ricos know it will be a Christmas of want, at least under the tree. Nonetheless, what they will give to each other cannot be returned to Target, nor will it lay unused in a closet.
Christmas is a time of faith for most Christians, but for the Rico family, it’s a time of faith under trial. For them, every time is.
Fred Dickey’s home page is freddickey.net
His email is email@example.com
© Copyright 2013 The San Diego Union-Tribune, LLC. An MLIM LLC Company. All rights reserved.