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Often when we read a story, we don’t know how it ends. For this special issue, published to honor Mother’s Day this month, we set out to follow up with four mothers whose families we have profiled in previous years. We knew a little bit about some of them, but not everything about everyone. The stories that follow reflect our own discovery in preparing an update on multiple (and multiples) lives. As readers, too, will discover, we did not set out to find the stories that all shared the happiest of endings, but rather the stories that needed to be re-told. The Editors THEN: September 2001 NOW: May 2005 Derek’s story In a September 2001 story, then-CHOC patient Derek Hoffman, above, was our cover boy. “Mommy,” he asked, “why are you crying?” “I’m sad that you have that tumor.” “It’s OK; I don’t want you to cry. If it makes you sad, then I’m sad.” Derek Hoffman’s big cover photo day was not the best of times. But he smiled a golden smile for the moment it took to snap one camera frame. He was an adorable 6-year-old child, obviously ill, spread across a hospital bed, with no head of hair but that unforgettable glimpse he gave into his soul. Two years later, in September 2003, it was Derek who beckoned his mother for one last glimpse. He asked her to come close to him, so he didn’t have to whisper loudly. And he mouthed these words: “I love you, mommy, you are the bestest mommy.” On that day, he asked that the windows be opened and the blinds pulled back. His room, darkened because of cancer’s effect on his eyes, lit up again. It was time, and he knew it. His death scene seared the family, and though they did not realize it then, his image became etched in history. His was a Pope-like suffering in life, a stoicism that defined his character. Derek’s 102 months more than 36 months handcuffed to a disease determined to chop at a youthful body arose out of the anguish: In Orange County, where family and friends knew him in health and in illness, and in Texas, where cancer research and a meatloaf of all things is being funded, and made, in his name. Says his mother, Yoon, “Even though we didn’t have a happy ending, there is so much courage in his passing away. I think people would get strength from it.” Yoon Hoffman has found a recipe: soak in the strength from her weakened son to be strong in his memory. It has become more than a duty for this mom; she daily hears her calling, like clear words mouthed from a dying child. The 41-year-old mother of 4-year-old Ashley lives outside Houston in Friendswood, Texas, with husband Tom, 44, and Tom’s mother, who long ago joined the Hoffmans to provide support. The family moved in June 2002 from Anaheim Hills to take advantage of the renowned MD Anderson Cancer Center. Derek’s kind of cancer he was diagnosed at 5 1/2 with a soft-tissue disease called rhabdomyosarcoma is particularly virulent. Tom Hoffman was able to transfer his job with Boeing from Orange County to Houston. “ Soon after he passed away, it was so difficult, going through the stores and passing the boys’ stuff. I remember sitting under a mannequin and sobbing, because I couldn’t buy anything. Then I said, ‘Why can’t I buy those toys?’ So I bought them and donated them for the hospital. It doesn’t matter who plays with them.” Yoon Hoffman Derek did not live to see 9. When OC Family Magazine recently tracked down the family, his mother filled in the gaps from the day the picture was taken, for a September 2001 Cover Story about the young lives at Children’s Hospital of Orange County, to life today. Before, a snapshot, and now, the whole story. “ He passed away in 2004, no, it was 2003,” she says. There is tragedy in her voice, but triumph in her heart. Had he been gone that long? All she knew was that he was gone too soon. “ When he was 5, just before he was diagnosed, he wrote a poem, ‘A Cup Floating.’ (“One day a kid woke up and looked out of his window / He saw a cup floating in the air / He jumped into the cup / He found water.”) “And on the day he passed away, I said, ‘You know what, he found his water.’ “In hindsight, that poem was describing his last day on earth. When we look back on his last day, the last two weeks of his life, he was so sick, on morphine round the clock. He was basically in pain. Anything touching the bed would hurt, and any light would hurt his eyes. I really did not think he was going to go that day. He wanted all the windows open. It was a sunny Friday. He told me he loved me. And then he asked his daddy to hold him. And he said, ‘Oh, no, it is hurting.’ His daddy put him down and he said, ‘Hold me again.’ The last time he asked his daddy to hold him, he had his grandfather put his weak arms around Tom’s neck. He asked grandpa for a drink, and he gave his dad a big squeeze, and then after that, Derek threw up. And that was it.” For as strong as the Hoffman family is, as grounded in knowing who they now are and where Derek now rests, there is something haunting about a comment Yoon Hoffman made, a question she will need to answer day by day: “After Derek passed away, we asked, ‘How do you keep on going?’” For Yoon, Tom and 4-year-old Ashley, since a Friday in September 2003, it’s about redefining hopes and dreams. The pastor came that Friday. The family had wanted him to visit all week, and here he was. Derek could hardly lift a finger and the pastor said he would come back. “But before I go, I want to ask you just one question. ‘Do you believe in Jesus?’” And Derek nodded his head. Not long after the boy’s death, the couple ate at a Houston-area BJ’s Restaurant & Brewery; the Huntington Beach-based company was a favorite of Derek’s because of the meatloaf. The Hoffmans noticed a flyer being passed around for a local fundraiser. They looked at each other. “We were thinking, we’re not going to sit and mope. What can we do?” Yoon recalls. They talked with the manager about creating a fundraiser for research into Derek’s type of cancer. That kind of work already had begun with Derek’s cousin, Jennifer Matsui, back in Torrance; her two annual fundraisers have now brought in $3,000. The company agreed, a day was picked, the restaurant pledged 15% of food proceeds, flyers were made, and hundreds of people showed up. “It was a big party in Derek’s honor,” Yoon says. “It was just so wonderful.” A second fundraiser is being planned and company founding partner Paul Motenko, now a family friend, helped change the name on the Texas menu for BJ’s meatloaf. It is now “Derek’s Favorite Meatloaf.” Shortly after the fundraiser, Motenko received a letter from Yoon. “It was without a doubt the most meaningful letter I’ve ever received,” he says. “I give talks to the staff at every opening, and the last thing I do is read Yoon’s letter. It puts everything into perspective...It didn’t change the culture of our company, but it defined it.” Life with Ashley is a joy, and a bit louder than with Derek. The little girl, who spent some of her babyhood going to and from hospitals to visit Derek, is a completely different personality. She “wants to be front and center; she loves to perform,” reports her mom. “It’s time,” says Yoon, “for Ashley to get involved in things.” That kind of effort has become the family ethic. Last March, on Derek’s birthday, they held a book drive at church and donated more than 1,000 books to the hospital. “Life after his passing is not hopeless. It’s a lot about making a difference. Within that sadness, there is strength, there is courage, and there is faith. And it is up to us to be courageous. Or not. And some days, it is better than others.” If Yoon Hoffman could be granted a wish, it would be this: Derek pops out from one of his photographs and gives her a hug. A squeeze, like he did his father. She knows that the test of faith is to ask whether, given the choice, she and Tom would accept a mostly sick boy for a too-brief 8 1/2 years, or tell God that they would rather take a pass. “We would still choose Derek,” says his mother. Last year, the Hoffman family planted, in Derek’s memory, a gift from a friend, a persimmon tree. The winter’s storms in the Houston area were particularly harsh. Of the three trees in the back yard, two were overcome by the freeze. The persimmon tree survives. It blooms today. By Craig Reem Donations for research into Derek’s particular cancer can be sent to: •Attn: Derek Hoffman Fund University of Texas, MD Anderson Cancer Center, P.O. Box 4486, Houston, TX, 77210-4486 •For more information about the August fundraiser in Torrance hosted by his cousin: jim.matsui@earthlink.net THEN: September 2000 NOW: May 2005 The Hodges’ quads made quite an impression as baby models in a Cover Story about multiple births. Today, the kindergarteners take in a playful moment for a smile, clockwise from left: James, Melissa, Lucas and Jon. The foursome grows up Nighttime snuggles in. The telltale signs, amid the quiet, abound. Four pairs of Converse shoes lean one against the other like modern art near the front door. Three are high-top, the last of a blue-and pink design. Outside at curbside, a 12-passenger van sports a vanity plate: QUADMVR. Inside, the house is clean freshly vacuumed. The red, blue and yellow “Little Tyke” table used for homework and playtime takes a well-deserved rest in the middle of the living room. And the numerous photographs seem grouped in fours: Four babies, then four toddlers, now four kindergarteners who turn 6 this month. Down the hall sleep the stars of this show. Jon’s head is turned upward, mouth open and dreamland in play; Melissa is wrapped in a blanket like a bug in a rug. In an adjacent room, a toy plane rests at the base of James’s bed. And Lucas doesn’t make a sound. Jim Hodges turns a shoe upside down and out slides a child’s handful of sand. It’s been another busy day in Costa Mesa. Now amid the echo of recent hustle-bustle, as a pro basketball game flickers on the large TV set, Shelly, 42, and Jim, 45, take time to reflect. It’s been a busy six years for these Costa Mesa parents. “I know my purpose in life is to raise these kids,” says Shelly. “God gave me these children; I sure don’t want to let him down.” When the quads were profiled in a September 2000 Cover Story about multiples, everything was still new, including the then 16-month-olds: They were born nearly three months early and doctors at Long Beach Memorial Hospital told the Hodges that the foursome were the healthiest they had ever seen at 28 weeks. The couple, who couldn’t conceive in the first seven years of marriage, used $15,000 from savings for fertility treatments. When the babies were born, Jim sold his Harley-Davidson to pay for an aide for a year. Today, Shelly’s dream of “always wanting to be a mom” continues to multiply daily. The children are healthy; the family goes on camping trips; while she stays at home to coordinate lives, days and school, Jim works his job in the plumbing business. Shelly has also found time to pursue becoming a notary public (“I wanted to make sure I could still think outside of this box that I’m in.”) And, like many couples who bought a home before kids, they worry that the growing foursome will make their 3-bedroom, 2-bath, 1,600-square-foot house feel like shrink wrap. But, as they note, “We have no complaints.” Shelly once belonged to a multiples group and she saw the daily struggle with physical challenges that often strike the birth of multiples. “My No. 1 goal for my kids is I want them to be happy, definitely healthy, and honest,” she says. This she knows: “You have to remember to laugh.” That may be a key to the Hodges’ success. She is able to keep patience at the forefront and he lives for the eight arms that embrace him at the end of a workday. “It’s all in stages,” Jim says. “I remember thinking that we were so happy that they could hold their own bottle because we could get something else ready. Then it was talking. Now it’s getting to the stage where they can play with dad and have fun. We’re playing baseball and soccer. And now the next stage is teaching them to read, to count.” The four high chairs that used to be feeding central in the kitchen have been replaced, their father reports, with “balls and gloves.” Shelly’s biggest worry is finding the time for individualized attention. This is a common challenge among parents of multiples who grow up together, reaching stages together. On whom do you focus? “They’re all different personalities,” says Jim. “You have the person who is quiet, Melissa; James is very sensitive; Jon’s always happy-go-lucky; and Lucas is Lucas.” “It’s hard being a mom,” Shelly admits. “My famous saying is, ‘This, too, shall pass.’ If you are having a bad day or a bad moment, in five minutes, you will be laughing about something. Be patient and know it will be OK. God only gives you what you can handle.” On this night, like every day, her dream of “always wanting to be a mom” continues to unfold. Jim looks at her with a smile: “Well, you got your wish.” By Craig Reem THEN: NOVEMBER 2002 NOW: May 2005 A Special Report on organ donations included cover subject Drew Denny, then 3. She has received a transplant, but nearly 2,300 more children remain on a waiting list. A mom’s gift of life For years, Mika Denny has brought awareness to the nation’s critical shortage of organ donors. From the license plate on her car that reads DN8LIF to speaking engagements and writing articles, she advocates for the 87,000-plus people nearly 2,300 of whom are children in need of a life-saving transplant. Today, the Laguna Hills mother adds another side to the message as she grapples with the emotions that come from this second chance at life. Earlier this year, her 5-year-old daughter, Drew, received a liver transplant. Drew, profiled in the November 2002 cover story, was diagnosed at 2 months old with biliary atresia, a condition marked by the congenital absence or closure on the ducts that drain bile from the liver. Though the condition is rare, it ranks as the No. 1 reason for liver transplants among children. The intricate surgery was performed on Drew, who had been on the waiting list for 2 1/2 years, on Jan. 18 at UCLA Medical Center. She received a part of the donated liver; the other portion was transplanted into an adult male. Drew is recovering well. “It’s almost like someone giving birth to her again,” says Mika of the donation that came from a 17-year-old teenage boy who lost his life. “That someone gave her that gift; it’s unbelievable. And for someone to do that during their moment of grief, for a family to be able to say, ‘Yes, I’d like to be able to help other people,’ there’s just no words. You can’t put it into words how grateful you are.” Tears of sorrow, tears of joy spill down Mika’s fair-skinned checks as she thinks of the young lives lost as well as those who have been saved. She grieves for the 17-year-old boy and his family. She aches for the children she knew through her work at Children’s Liver Association for Support Services who died while waiting for an organ donation, as well as the ones whose transplant failed. And she is moved to tears when she talks about the successes a young toddler who used to nap most of the day but who now has the energy level of other boys his age. And there is the remarkable story of her daughter. Today, the only telltale sign of Drew’s life-threatening battle comes when she lifts her shirt. Fading suture marks are spread across most of her stomach; a small tube is inserted into her chest where Mika administers medications intravenously once a day. But these haven’t slowed Drew’s feisty, strong-willed nature. Red curls bounce upon her petite shoulders as she runs and squeals while chasing her cat through the kitchen on a recent Monday, less than three months since her surgery. Still, it is difficult to loosen the protective grip. “For us, it’s about trying to get back into a normal life, not be afraid of dirt and not being afraid of sick people, but trying to be as normal as possible for Drew, which is difficult as a mom,” say Mika. “You just want to put them in a plastic bubble, like one of those little hamsters. Stick her in the plastic bubble and roll her to school. But that’s not what it’s about. She didn’t go through all that surgery and medicines to be isolated.” Nor did her mother. Mika, who also has a son and two stepchildren, has momentarily stepped back from some of her efforts at C.L.A.S.S. where she volunteers and serves on the advisory board. But the work never ends. The 39-year-old began posting information for families in her support group on what to expect following surgery. She has also become an ambassador at One Legacy, an organ procurement organization for the California area, where she will share her story about having a loved one saved through an organ donation. Her husband Darrell, who’s been there each step of the way, continues to spread the word as well. “I think some people would think that, ‘Oh my child got her organ. I’m done. I’m tired of this,’” says Mika. “But I just checked the website and it’s closing in on 88,000 people still waiting. And having Drew have such a success story, that makes me want to talk about it even more. “We have this great success story and we will keep talking about it.” By Sandy Bennett How to help There are currently 87,789 people, 2,287 of whom are children, on the national list for an organ, according to statistics from the United Network for Organ Sharing. You can help by taking two simple steps. 1. First, make the decision to be an organ donor. 2. Secondly, make sure to tell your family or loved ones of your decision; often, families lose a loved one to sudden death and don’t know, or understand, their wishes. To ensure that your decision to donate life is honored if you are eligible for organ or tissue donation, sign up today to be a donor at www.donateLIFEcalifornia.org. Because of the shortage, it is also becoming more common for people to donate organs and partial organs while living. Visit www.shareourlife.org for information. THEN: June 2001 NOW: May 2005 A mother for all discarded babies Much of Debi Faris-Cifelli’s life has centered around embracing babies both living and dead. She has joyously raised her own three children, but she also has buried the tiny, helpless, cast-aside bundles who now rest in peace and forever under 72 crosses in the Garden of Angels at Desert Lawn Cemetery in Calimesa. Since 1996, abandoned infants found throughout Southern California in Dumpsters, along roadsides, or washed up on beaches have been given proper burials; each has been given a name. The first three were Matthew, Nathan and Dora. From being tossed away and forgotten, they became a rallying call to save lives through educating young people in distress through videos distributed to schools, churches and others. But a larger solution was needed, even a miracle. Missing from her nonprofit effort was adequate funds. Then last year, she won the California Lottery and her story and the plight of the babies made it onto a national platform, in People Magazine. Long before the national acclaim, when she was profiled in the June 2001 issue of Inland Empire Family Magazine, she had just played a key role in the passage of the Safe Arms for Newborns bill. The legislation became California law in 2001. A mother of a newborn now can deliver her infant within 72 hours of birth to an employee of any California hospital emergency room without fear of prosecution. Such a decision saves the wrenching tragedy of otherwise dumping a baby where death is almost certain, followed by a prosecutor’s decision to file murder charges. “We’d been running a pretty tight ship,” Cifelli recalls, “where we had a budget of less than $200,000 a year.” That had to cover all of the Garden’s work as well as office space as well as Cifelli’s travels around the state and nation telling people about her work and getting the word out about the Safe Arms law. It may have been possible, then, to hear the delighted flutter of angels’ wings over Yucaipa last December when Debi and her husband Steve received a $10 million check as the state’s newest lottery winners. “I feel, first of all, it was a gift from God,” she says of the windfall. “I feel, in a way, it’s the children saying to us, ‘We want to take care of you because you took care of us.’” This good fortune will certainly help the work of the Garden and provide a secure future for Debi and her family. The Inland Empire also will benefit in the form of a scholarship foundation. Debi divorced a few years ago, but happiness returned when she married Steve Cifelli, a counselor at Yucaipa High School, in July 2004. One of the qualities they share is a profound desire to help others. They decided to use part of their lottery winnings to establish 144 scholarships in the names of each of the 72 babies buried in the Garden, two for each child. Scholarships not only for kids just finishing high school, she says, but also, perhaps, for “a man whose company has been downsized and needs to go out and learn new things, or a woman who may be raising a family as a single mother.” The Garden of Angels and the efforts to educate people about the Safe Arms law will always welcome the public’s donations because “this is a huge endeavor, a life-saving endeavor,” Cifelli says. Seventy-four babies have been safely surrendered since the law went into effect in January 2001. It is a number that now surpasses those babies she has buried. “My goal, my passion, is to never bury another baby again.” For information about the Garden of Angels and Safe Arms for Newborns, visit www.gardenofangels.org or call 909.446.0535. By Michael J. Medley |
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