Dream Weavers
December 1st, 2009 by Jane Schneider
The holidays are all about making wishes come true. That’s why the Make-A-Wish Foundation® of the Mid-South is celebrating its Season of Wishes campaign. Their goal each year is to raise money and awareness about the work it does, granting wishes for children across the Mid-South who are chronically or terminally ill.
We spent time with one family, Marc and Alexa Lane, whose son, Justin Fite, will have his wish come true on Tuesday, December 3rd. We wanted to give you a window into the life of one special-needs family touched by this nonprofit foundation.
Justin’s story
Ten-year-old Justin Fite bounces on a big, purple ball, riding it like a punch-drunk cowboy. Boing, boing, boing. He lists from one side to the other, occasionally closing his eyes, retreating, perhaps, to some imaginary world. Then he opens them again and smiles. Boing, boing, boing.
“Take it easy, Justin,” his mother Alexa calls out, “You’re starting to bounce too close to Benji.” Benji is Justin’s half-brother, an energetic 20-month-old who is playing on the living room floor with his grandmother. Benji just laughs, seemingly more entertained than bothered by his brother’s bouncing. On the couch nearby stepbrother Alex, 11, also keeps an eye on the action, peering periodically over his laptop.
Now a fourth-grader at Richland Elementary, schoolwork has become more challenging this year for Justin, and even with the help of a full-time assistant, he is struggling to keep up with his peers. So when frustration gets the best of him, he bounces. It helps him cope, his mother explains. Minutes later, his mood has leveled off, and he and Benji are building blocks together on the floor.
“I love my Benji boy, my Benji boy,” he sings sweetly.
In some ways, Justin is like any 10-year-old kid: he loves animals and video games, dinosaurs and bats. He is a handsome child, blessed with dark, expressive eyes and a gentle nature, a trait his father admires. But while Justin appears normal, his young life has been fraught with serious health complications and challenges.
Balancing act
A brain infection, the result of heart surgery at birth, left him with hydrocephalus, epilepsy, and a host of neurological problems that affect his ability to learn and communicate fully with others. A shunt inside his brain siphons off excess spinal fluid to his abdomen, where it gets absorbed into the blood stream. The threat of infection or seizures is always lurking.
“Your child is like a walking time bomb. Anytime he talks about having pain or a headache, a stomach virus, I worry about the shunt,” Alexa says. “You have this fight or flight response. I start to stress but try to stay calm. I don’t let him know I’m worried but I can feel the adrenalin and in my mind, I start to plan for an emergency.”
Thankfully, such emergencies aren’t a daily occurrence. But they happen more often than Alexa would care to let on. Even so, her family manages. Alexa is a patient, pragmatic mother. She’s given up jobs she’s loved in order to care for her son (one job in particular as a zoo keeper) though now she’s found a part-time position at the Jewish Community Center. “I need time to myself,” she says.
Since Justin’s medical issues started at birth, he’s received good care and she is well versed in how to access the services he needs. There’s the social worker who teaches Justin how to better interact and express himself with his peers, and the neuropsychologist, Dr. V. P. Brewer, who tests him every six months to determine what he’ll be capable of doing on a daily basis, “so he can reach as much of his potential as possible,” says Brewer, head of the Center for Pediatric Neuropsychology, housed at Le Bonheur Children’s Medical Center.
“They assume because a child physically looks normal that he should perform normally in other areas. That’s why we try to find out what’s going on with each child and then develop an individualized education plan which makes the schools follow the suggests we make, so children like this can do better in school.”
Alexa juggles the care of her children with the assistance of husband Marc, a technical coordinator with the Memphis City Schools, and Justin’s dad, Julian, a motorcycle mechanic who also assists in his care.
“You learn to live every day, day-to-day and not worry about the future,” she says. “You adapt, it’s difficult, but you adapt.”
Making wishes come true
Helping families like Justin’s is what the Make-A-Wish Foundation of the Mid-South is all about. Walk through the hallways of their offices in East Memphis, and you see evidence of the children whose dreams have come true. Little girls pictured with Disney princesses and country music stars, little boys dressed as CIA agents or waving from the back of a limo. One boy from Mississippi used his wish to have a baseball diamond created behind his home, where the community now gathers for ball games.
All beam kilowatt smiles. And that is the point, to give each child the opportunity to forget about his or her diagnosis for a brief time and simply be a kid. “I think there’s a misconception that the children we serve are terminal but many go on to live healthy lives and we think the wish gives them the motivation to fight through what they are facing,” says executive director Liz Larkin.
Thanks to a staff of 20 and a volunteer base of 400, the Mid-South chapter granted 253 wishes in 2009. They are optimistic they’ll touch even more families in 2010.
How children are selected
Friends or church members can recommend children to Make-A-Wish, but to be selected, a physician must verify that the child’s condition is degenerative, malignant, or progressive. Once accepted, the child may choose from one of four types of wishes: to go someplace (Disney World is the number one destination), to meet someone (a celebrity or sports figure), to be someone (a rodeo clown or ballerina), or to have something (a laptop computer or playhouse). The organization then sends two volunteers to visit with the family, learn more about the child, and coordinate the wish granting.
To jumpstart the process, the family receives a booklet that helps the child’s imagination take flight. “The benefit of the wish is that it’s worry-free,” says communications manager Miranda Harbor. “We take care of everything.”
The average cost of a wish is $7,200, which is why the organization holds its annual fund-raisers. To grant a wish, groups are required to raise $5,000. Companies reach that goal by asking for employee or customer donations; schools adopt kids too, and collect money by holding car washes, penny drives, and bake sales. “Many people give $10 or $20 donations, but it all adds up,” notes Harbor. “When everybody contributes, it can make a difference.”
The coolest wish
When Justin was first told that he could wish for anything, he chose the coolest thing his 10-year-old mind could imagine, “He wished to be turned into a T. Rex,” says his mother with a laugh. Once he learned his idea might be out of reach even for the Make-A-Wish folks, Justin chose instead a trip to Disney World.
The foundation covers all of the costs for the week’s stay, from travel and accommodations to food and even some incidentals, like luggage for the kids. A toy closet at the foundation office, (where you’ll find boxes of Make-A-Wish Barbies), ensures that no kid in the family goes away empty-handed. Though looking forward to their time at the Magic Kingdom, Alexa and Marc will have to go prepared with the medications they carry for Justin at all times. His epileptic seizures, which typically take place while he’s sleeping at night, are life-threatening, and do not resolve on their own. The medication means the difference between life and death.
But ask Justin about his wish, and he gets a faraway look in his eye before a smile begins to dawn. Disney World may not seem real yet. In fact, he won’t know his dream is coming true until he and his family attend the reveal party, to be held at the Great American Furniture Store in Southhaven, Mississippi, in December. For now, it’s akin the dinosaurs he likes to think about, something big and impossible and maybe, just maybe, the best thing a little boy could wish for.