Part 2 

A Place to Turn To

In Virginia, all insurance companies must offer a hospice benefit, but there are many configurations of benefits. Noah's accepts private and Medicaid benefits, but any child who meets the eligibility requirements will not be denied care. Hospice benefits may not be accessed until a doctor has declared that a patient has a life expectancy of six months or less. Some insurance companies terminate hospice benefits when that six months is up and the patient is still alive. Others will continue to provide benefits. A care provider such as Noah's Children gets paid a certain number of dollars a day and must use that payment to provide nursing, social work, spiritual aid, physical therapy and equipment. Once the doctor signs the certification that a patient only has six months left and the family chooses Noah's Children as their hospice provider, the Noah's team comes up with a plan of care for the patient and her or his family. All aspects of terminal illness are considered, from medical needs to financial counseling. A social worker evaluates the family for stressors, offers appropriate support groups, financial counseling, funeral planning and ways to deal with government agencies such as Medicaid. The nursing staff provides treatments, accompanies the family to the doctor and stays available around the clock to respond to family questions or death calls. "All of life is a spiritual journey, and certainly the death process is," says Dawn Colapietro, who serves as the spiritual coordinator at Noah's Children. "It's about finding answers within ourselves … there's so much anger and confusion. And how do they find God in that time? For some, it may be the first time they ever claim it." Parents of seriously ill children, Colapietro says, are forced to face many questions. What happens after life? Is there a heaven? How can they continue to communicate with their child? "A door of incredible pain is opened and then there is more pain," she says. At that point, she says, her social work skills come in handy - listening with compassion. Her main role, she adds, is to "help other people find the answers they need to the questions they have. That is the most sacred ground and it is a privilege to walk it with them." The door to Sam Anderson's room opens directly off the family room, easy to reach in a split second. Noah's volunteer Peggy Graeser takes a break from her reading to chat with Marion in the family room, and Melissa, just home from work, takes over the task of helping Sam. Lying in the middle of his carpeted bedroom floor, his head is propped on a pillow and soft blankets surround him. "I'm very tired," he apologizes. "I haven't gotten much sleep for the past two nights because I've been having pain." Handsome, with a head of wavy blond hair, tortoise-rimmed glasses and a charmer of a smile, Sam is funny and extremely bright. He teases his parents and sisters, and he's coy about providing personal information. He remembers dates and places without fail, and does not suffer fools gladly. When asked about his favorite CDs, he says with a distinct tone of duh, "Look at the shelf for yourself, and you'll see what I like - but if Britney Spears is in the CD player, that's not mine. It's my sister's." Melissa kneels next to Sam, smiling with complete and total adoration. He's able to hold her hand, move his arms, lift his head to drink from a straw (favorite drink: Yoo-hoo) and talk by placing his finger over his tracheotomy tube. A feeding tube nourishes his 64-pound body. Sam's room looks like that of any other 11-year-old boy except for the IV stand behind his bed and the wheelchair beside his door. There's a stereo and stacks of CDs (favorites are Billy Joel and Roy Orbison), videos ("Toy Story" and "Gremlins" are tops), a Buzz Lightyear comforter on the bed, a big stuffed Mickey Mouse, toy race cars and posters on the walls. Quite a few posters pay tribute to racecar driver Jimmy Spencer, whom Sam met a couple of years ago. Spencer has become Sam's fan and the sponsor of treats like last summer's family trip to Disney World, their fourth visit in two years. There are also photos of a few pretty There are also photos of a few pretty girls cut out and taped to the wall near his bed. "Yes, I'm at the age where I like girls," Sam explains in a serious tone that cracks his mother up. He says he's particularly fond of girls with blonde hair. There's also a picture of the Magic Kingdom in all its fantastic splendor. "I love the fireworks," he says softly. "I like to hold Mommy's hand and watch for Tinker Bell to come down." He looks up at Melissa Anderson. "Mommy, I love you very much." She responds in kind. [image-1](Chad Hunt / Style Weekly)Marion says daughters Ashley, 8; and Heather, 9; have "adapted in a wonderful way. They have good hearts for kids that age."Noah's volunteer Estelle Call regularly drives to Mechanicsville to pick up Sam's sisters Ashley, 8, and Heather, 9. Together, they drive to Noah's office where they visit with a therapist, either together or individually. After their sessions, Call piles them back in the car to do something fun. On recent outings, they've been to a movie ("Thomas the Tank Engine"), to Maymont and to a pumpkin patch. They always grab a quick dinner before its time for a support group for kids with ill siblings. "We always have fun deciding what we eat and where we eat," says Call, who has nicknames for the girls - Ashley is "Bunny" (she tends to bound around energetically) and Heather is "Sunny." In the children's room at the Noah's office, Ashley and Heather plop down on a crate furniture sofa next to Estelle and carry on in the usual sisterly way. "Hey! You took my Starburst!" Ashley accuses Heather upon discovering some candy has gone missing. The walls are painted brightly and the furniture is comfortable. When asked to describe their brother, Heather is grave. "He's very, very, very, very sick," she says. "He's going to die, probably, sooner or later." Both she and Ashley remember when he could still walk around the house. Now they take turns spending time with him. Heather reads Harry Potter books to him; Ashley plays video games with him - Mario and Pokémon are favorites. Sam is very funny, they say, a big tease. "And he likes snakes and insects," Ashley adds, clearly repulsed. The sisters agree that the hardest times are when everyone is scurrying around the house at all hours in an emergency mode, getting ready to pack everyone into the car to take Sam to see one of his doctors - as far flung as Georgia and Pennsylvania - and then, at the last minute, someone phones to say that the trip is off. The time Call has invested into the lives of Ashley and Heather is making a difference. Recently the girls were asked for names of important people in their lives, those who love them, take care of them, and Estelle was on every list. An expression of pain and regret comes over Marion Anderson's face as he considers what the recent years have been like for his daughters. "The girls have been lost in the shuffle … up until recently," he says. "It's been almost impossible to do the extra things like after-school get-togethers and school functions. I'm here all day and the stress is just gradually inching up there. Then they come home from school and they're happy and noisy and it's like you took a load of china and just dropped it on the floor. You just have to step back and watch what you do … the last thing in the world I'd want is for them to think I didn't want to be their dad." Marion concedes that he and Melissa have a tendency to hover over the girls; they try to keep them in sight at all times, even as they play in the backyard. So having Estelle volunteer her time to take them to do fun things as well as attend the group meetings at Noah's has helped immensely. "We want them to get their feelings out and they can't necessarily do that with us," Marion says. "They're worried and Noah's has given them an outlet for questions, concerns and worries." Most of the time the girls are typical, bouncing 8 and 9 year olds, however. "If there's one gift from God, that's it - they're cheerful," Marion says. "They've adapted in a wonderful way. They have good hearts for kids that age." Noah's Children holds a special ritual at the end of each round of bereavement group support sessions. It'll be there for the Anderson family and all of the other families when the time comes. On a recent evening, sisters and brothers, children, parents and friends of loved ones who have died - some violently, some suddenly, some after a long illness - gathered at Noah's office. The sun was beginning to set, but the sky to the north was still a crystalline blue. The adults and children retreated to a grassy area next to the office building and held hands in a circle. They spoke of why they were part of Noah's Children. Then, because young children need some way to turn their loss into something they can see, they carefully tied notes and drawings made with colorful markers to balloons. From the center of the parking lot, they sent the balloons sailing into the sky. Each person released two balloons: one with a note to the person they'd lost and one of hope. Squinting in the sunlight, a little girl watched a bright red balloon as it soared away. Tied to it was a drawing and note written to her mother. She said softly, to nobody in particular, "I hope she received it." Jump to Part 1, 2,

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