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Sunday, August 29, 2004 |
'Sam has made us be what we ought to be'
Severely disabled with cerebral palsy, Sam Beller has changed lives of those around him
 The Dallas Morning News/Melanie Burford |
By ROBIN GALIANO RUSSELL / Special Contributor to The Dallas Morning News
It's 7 a.m. at the Beller household. One of three regular nurses arrives to begin her morning routine with 11-year-old Sam.
In the "nurse's corner" of the Beller kitchen, she fills oxygen tanks, prepares breathing treatments and mixes formula meals. She fills syringes with medications. Then she goes to wake Sam.
Sam's bedroom looks like a hospital setting. The nurse begins her head-to-toe care for him. She changes his diaper. Suctions his nose and trach. Washes his face and brushes his teeth. Gives him a sponge bath. And starts up a percussive ventilator machine that taps and clears his lungs. It takes two hours from the time Sam wakes up until he's ready to go out the door.
 The Dallas Morning News/Melanie Burford |
Sam watches wordlessly from the bed, communicating with facial gestures. He smiles big when the nurse talks to him or when his younger siblings pile into his bed to watch cartoons. He clearly frowns when he's scared at having his trach changed – despite his nurse's attempt to distract him with a silly song – because it leaves him without an oxygen supply for a moment. Otherwise, he barely moves a muscle.
Meanwhile in the kitchen, Kelly Beller tends to her three other children, ages 4 to 9, as her architect husband, David, leaves for work. They are both tired, having been up once or twice during the night to check whenever one of Sam's monitors blips or he makes restless sounds.
"A lot of times, I feel he's living on a different track than the other kids and me," says his mom, with a pause. "That's hard."
Sam is severely disabled with cerebral palsy. He has lost any mobility he had as an infant, when he could swallow food and hold baby toys. Now he is confined to a wheelchair or his bed. Sam Beller will never walk or talk. Doctors say he won't live beyond his late teens.
"It's a constant struggle to keep Sam alive," says Ms. Beller, 39.
And it's a struggle to not live each moment worrying about Sam. Without their faith, it would be a lot harder, they say. The Richardson family has learned to accommodate Sam's needs and also to invest in one another through outside activities, getting counsel when they need it and staying active in their church.
They say they are anchored by their belief that God is still good and allows things to happen for a reason. "I learned that God would endure the suffering with me, that he wanted me to climb into his lap and beat my fists on his chest, like a child might when frustrated with his parent," says Mr. Beller, 38.
 The Dallas Morning News/Melanie Burford |
There have been adjustments, to be sure. The Bellers are more homebound than most families. They don't go out to restaurants after church, and they don't take many vacations. If they do, they can't fly anywhere. They have to drive and rent a trailer to lug Sam's equipment and supplies. Then it takes hours to get Sam set up at a motel.
"It's exhausting," Mr. Beller says.
Their younger children keep up with after-school soccer, ballet and piano lessons, but they know they can't all just head out of the house on a moment's notice. And evenings out are rare for the parents. They have to plan a date several weeks in advance because they have to hire a nurse for Sam and a baby sitter for the rest of the kids. Church respite programs help. They give families of disabled children a night off from caretaking duties. But it's still work, and it doesn't always come off as planned.
"Sam's disabilities have disabled the whole family. We can plan things, but we can never really plan on things we commit to," Ms. Beller says matter-of-factly.
Sam's smile
Their path to surviving as a family has been a gradual thing. When Sam was born 11 years ago, he seemed like a normal healthy baby. Then his eyes started crossing at 4 months. By 8 months, he needed physical therapy for overall muscle weakness.
"We started down the trail of hunting for a diagnosis," Ms. Beller says. "You start to worry. You know something's not right."
At 10 months, surgeons corrected Sam's eyes. Around his first birthday, his parents finally got the diagnosis of cerebral palsy. It had been triggered when oxygen was cut off from his brain for two minutes sometime before he was born, perhaps due to a pinched umbilical cord or an intrauterine stroke.
 The Dallas Morning News/Melanie Burford |
At 18 months, surgeons inserted a feeding tube for formula. By the time he was 4, he needed a collar to hold up his head. Now he cannot sit up by himself or walk. He can't raise his hands. He's unable to hold things. He can't roll over. He can turn his head to one side, but can't turn it back. He can vocalize but not verbalize. Mostly, he makes humming sounds, like a cooing when he's happy, and an insistent "Mmm mmm-MMM" when he's not.
Doctors say that Sam's muscles will continue to deteriorate and that respiratory problems will lead to recurrent pneumonia. Ms. Beller already has endured two 911 calls when Sam had trouble breathing.
Nurse Ursula Robles, one of the family's three regular caregivers, has been with Sam since he was 4. She provides head-to-toe care for Sam at home and also accompanies him to school at Greenwood Hills Elementary, where Sam is starting sixth grade – though he's been home the first week with a respiratory virus.
"That boy is smart as a whip. People look at kids in wheelchairs and assume they are mentally deficient. That's not the case at all with Sam," she says.
Sam sits in on health, science, social studies and computer classes, and also spends time with occupational and physical therapists at school.
In his classrooms, Mrs. Robles "speaks" for Sam.
"When I see Sam is upset at not having a turn, I say to the teacher, 'We need to ask Sam what he thinks.' " Mrs. Robles then guesses at what Sam might want to say. Sam frowns when she's off base and smiles big when she gets it right.
At home, Sam uses a computer Dynavox, a laptop communication device. His mother types in a question, then highlights for him which response phrase on the screen best describes his feelings. During a recent Bible study session, Ms. Beller and Sam "talk" about how his life makes people think about God, and they pray for his healing. Then she asks Sam what he'd like most to do if his body worked normally – talk, walk, jump or sing?
Sam replies he'd like to talk and jump most of all.
"He would like to get out of bed more," Ms. Beller says, adding that he watches TV a lot while lying down.
When his mother reminds him he might not be healed until he gets to heaven and asks if he can wait till then, Sam smiles.
"I told him that I can be patient – that I can wait, too. He really liked that."
Then she asks him, "Do you know your smile makes people happy?" He replies with a big smile.
With hormones on the way, however, Sam also shows attitudinal signs that he's becoming a teenager. Sometimes he will pout and "not talk" to the family for hours if he's upset. When Ms. Beller tells him he's acting like a grump, he smiles knowingly.
 The Dallas Morning News/Melanie Burford |
Siblings, buddies
With Sam's diagnosis, the Bellers – who always wanted four children – studied the risk of subsequent pregnancies. After learning there was only a 7 percent risk that the same thing might happen again, they opted for more. Doctors scheduled more frequent sonograms for Ms. Beller. The rest of her pregnancies were normal.
"We didn't want this to throw us off. Siblings would be good for Sam, and if it happened again, we'd be ahead of the game," she said.
Today, the younger Beller children are realistic about their brother's condition. They know it's possible Sam could be miraculously healed, yet they also know it's likely Sam will die before the rest of them grow up.
Tevah, 9, has taken on some of the characteristics of a first-born. She's so capable and self-assured that Sam is greatly amused when he overhears her being scolded. That's when his hums nearly sound like giggles. Tevah has gained a lot of spiritual wisdom, says her mom.
"If Sam dies, I'll miss him a lot for a little while, and then I will miss him a little for a long time," Tevah has told them.
Simone, 4, is too young to have known her oldest brother when he was more mobile. But she has been to the hospital when Sam has had surgeries and multiple pneumonias. She is fascinated with medical procedures and often mimics the nurse's routine with Sam when she plays with her dolls.
"Her 'babies' are in the hospital. She scams supplies from the nurses," Ms. Beller says.
Jacob, 6, has been a good buddy for Sam, says his mom. He often crawls into bed with Sam and makes him laugh by doing silly stuff, such as driving his cars across the bed or pretending to fall on the floor. He helps his brother open birthday presents by taking Sam's hand and using it to tear at the wrapping paper.
But the kids also have had to learn patience, and not just with Sam. Nurses and other caregivers often compete for their parents' attention, so the kids have learned to wait sometimes to ask for what they want.
 The Dallas Morning News/Melanie Burford |
"We try not to make it a Sam-centered home, but it's definitely not centered on them," Ms. Beller says of her youngest kids. "They have their after-school activities, but we're not flexible. We can't just say, 'Let's go to the park today.' They have to wait a lot. There are other adults in the house all the time, too."
Mr. Beller sometimes worries about what his children will remember from their childhood. "I don't want them damaged, to think about why they couldn't please me to get my attention," he says.
And he worries about Sam, too.
"I worry that Sam feels misunderstood. I worry that he feels trapped, isolated, bored, lonely. My heart tells me he loves us and his brother and sisters. When we're around, he's happy. He appreciates the simple things we're all too busy to notice."
Kelly and David
The Bellers don't schedule a nurse in the house overnight or after 3 p.m. on weekends. That's family time. And Ms. Beller says Sam needs to see his mom and dad taking care of him. As with their other children, the Bellers relate in different ways to Sam.
Mr. Beller enjoys horseplay. "We bonk heads, and I pound on him. I give him a noogie. I use his hand to punch me back. He thinks that's the greatest thing. We do an Eskimo kiss. I sing to him. I pray with him."
 The Dallas Morning News/Melanie Burford "Sam has made us what we ought to be. Families should be each other's life support system." - Kelly Beller. |
Ms. Beller holds Sam's hand, prays with him, talks with him and reads his eye language as only a mother can, and gently spins around his wheelchair while the other kids are singing.
The Bellers handle their grief in different ways, too. By their own account, Mr. Beller responds more emotionally. Ms. Beller says her coping style is more like, "Pull up your bootstraps and march, soldier."
"Kelly just rocks and rolls," Mr. Beller agrees. It's almost as if his wife runs a small company, he adds, as she manages nurses and therapists in the house, maintains an inventory of supplies and schedules prescription pickup times. The UPS drivers even recognize them on the street.
For Mr. Beller, the grief hit hard when Sam was about a year and a half old, after a few back-to-back surgeries. Mr. Beller was finishing a degree at the time, and his wife was the breadwinner.
"It was a low point for me. I just broke down. I completely fell apart. I just couldn't believe it had happened to us," he says. "There was a lot of anger, and I didn't know how to express it. I went into numbness mode for years. I had to. But all of a sudden, it hit me. I cried all the way to and from work. I finally decided to go see somebody. You need a counselor where you don't have to be polite."
Medical expenses have chipped away at Mr. Beller's salary as an architect. Despite help from state Medicaid programs, the Bellers spend $18,000 to $20,000 a year on out-of-pocket costs. Large-size diapers for their growing pre-adolescent cost $300 a month. Formula for meals is $230.
When Sam became too heavy for his mother to carry him to his bath, they installed a ceiling lift from his bedroom to the bathroom. Unlike Mr. Beller's colleagues at work, they will live in their "starter home" just inside the Richardson border as long as Sam is with them.
Mr. Beller feels that he and Ms. Beller carry around "invisible baggage" – that they're disconnected from the rest of the world. With their usual nightly sleep deprivation, they often feel tired, irritable and emotional. At work, Mr. Beller has learned to assert himself, telling his employer and co-workers when he needs to go to the hospital or relieve Ms. Beller from caregiving tasks. He says he sometimes compartmentalizes his life to survive.
 The Dallas Morning News/Melanie Burford |
"It's hard, because a lot of people ask how Sam's doing, and I have this instantaneous thought: 'At any moment, my son could die. His life is that fragile.' People don't understand. You tell them your son has cerebral palsy. They ask, 'What does that mean?' Oh, my God. Most of the time I feel pretty blank about it. I just block it out. I can't worry about it."
Being mostly housebound, the Bellers overcome loneliness by having friends over to the house. They host a weekly Bible study. And Mr. Beller connects with several men at Preston Road Church of Christ, where he is a deacon.
Ms. Beller has found a mentor in her friend Paula, whose son Jeffrey, 28, had hydrocephaly as a baby. Jeffrey has mental and physical developmental delays and has become Sam's best friend. Ms. Beller says she can talk to Paula about the hard things.
"I pick her brain. I call her. I just learn from listening to her. She tells me: 'This is your heartache. Everyone has heartaches. Don't feel you're singled out.' She's been my support group."
Ms. Beller is often asked to speak at women's retreats and Bible studies or one-on-one with other mothers of children with disabilities.
"You don't have to like it for your spirit to be calm," she tells them. "If you let yourself be defined by your struggles, when the struggles are over – and they all are, eventually – you don't know who you are. I'm not just a mother of a special-needs child. I am God's child, and I find my purpose in following him."
Mr. and Ms. Beller also make time for themselves away from the children, whether it's a monthly lunch out together or a weekend getaway that they squeeze in twice a year. Divorce is not an option, the Bellers say, no matter what.
And this, Ms. Beller says, is their no-matter-what: "It's hard now to even imagine who we would be without Sam in our lives. With Sam, you may feel selfish, but you can't act on it. You don't have that option. That may be a good thing."
Faith, grief and family
Fellow church members have helped out as they've seen the Bellers trying to cope. They've bought a conversion van, brought meals, volunteered to baby-sit and clean the Bellers' house, donated money, planted flowers and even painted Sam's room when he was hospitalized.
 The Dallas Morning News/Melanie Burford |
"You have to learn humility and allow yourself to be a burden to others by accepting and receiving help," Ms. Beller says.
Minister Scott Sager says the family inspires others in the congregation. "I don't think I could be David or Kelly. They are beyond words. But when they bring Sam into this building, what do we all think? That's what purity looks like. That's what an angel would look like if we could see one."
Sam is a spiritual magnet, his parents agree. Even people who don't usually pray will tell them they are praying for Sam.
The Bellers have taught him, along with the rest of their children, that healing will come someday. Perhaps not on earth, but someday. And they say Sam continues to grow in faith. He was baptized recently, after he pushed a pen that his mother held in his hands to show that he agreed with a simple statement of faith.
With a small group of church friends as witnesses, Sam was placed chest-deep into bathtub water. Carefully avoiding Sam's trach, Mr. Beller poured water over the back of his son's head, saying, "I baptize you in the name of the Father and the Son and the Holy Spirit, that you might receive the Holy Spirit and be forgiven of any sins you might have accidentally bumped into."
Despite their unshakeable faith, the Bellers say their grief cycles in and out.
"It's not like a death," Ms. Beller says. "You go through it over and over again. As you see other kids your child's age doing things your child should be doing, you do mourn. There are tears. You have to keep finding a way to get back to the acceptance."
They have faced the inevitable, and they talk openly with their children about the possibility of Sam dying. The Bellers bought cemetery plots this year at Restland Cemetery for themselves and Sam. Recently, Ms. Beller visited the Casket Store.
 The Dallas Morning News/Melanie Burford Kelly Beller gets a hug from mother-in-law Jane Beller as Elder Royce Hunter (top) leads the family in prayer at Preston Road Church of Christ in Dallas. |
"I've driven by it for years and have stared at it. Talking to another mom gave us the courage. It's weird, but you have to do it. It did give us some peace, knowing it's taken care of."
Still, the white-hot pangs of grief will stab unexpectedly throughout the day.
"It's not going to be easy," Mr. Beller says. "The scary thing for us – the really scary thing – is there's a strong likelihood there's just not going to be anything we can do about it when it happens. And we'll probably be there, at least one of us, because we never leave him alone. On the other hand, there's going to be a relief. He's fought the good fight and he's done. We know we'll see him later."
Ms. Beller says she sometimes chokes up when hearing a song or while driving on the side of town where the cemetery is located.
"You know what the outcome will be, and yet you try to live in the day. Sam needs me now. He won't need me when he's gone. But it's not really about me. It's about something bigger, and we just get to be part of it.
"He's the one we call our brave soldier. He's the one going through it, feeling the pain, having something wrong and not being able to communicate it. He is our example to pull up our bootstraps, because Sam does. In many ways, Sam has made us be what we ought to be. Families should be each other's life support system."
Robin Galiano Russell is a Dallas freelance writer. Her email is rrscribe@excite.com.
Melanie Burford is a staff photographer.
The Dallas Morning News published this follow-up article on the front of the Metro section a few weeks later...
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Sunday, September 19, 2004 |
Readers lend disabled boy a hand
News story on cerebral palsy patient inspires outpouring of good will
By ROBIN GALIANO RUSSELL / Special Contributor to The Dallas Morning News
Sam Beller will probably never walk or talk, but his young life may be enhanced by readers who want to help after reading his story in the Aug. 29 editions of The Dallas Morning News.
Sam, 11, has cerebral palsy. His muscles have deteriorated since he was an infant to the point where he is dependent on medical equipment to eat, breathe and survive.
His parents, David and Kelly Beller, told their story in the newspaper with hopes of encouraging other parents of special-needs children. Since then, the response from dozens of well-wishers has been overwhelming.
And some may help improve the quality of Sam's life.
Sam has recovered from a respiratory illness that kept him home the first week of school. He's had good reports from doctors, and he has had a flu shot.
Now thanks to a suggestion from a Richardson physician, the Bellers are researching the benefits of hyperbaric treatment for cerebral palsy patients such as Sam, to determine whether it could improve muscle function in his hands, arms, legs and neck. Hyperbaric medicine uses oxygen inhaled at high pressure to heal wounds.
Preston Road Church of Christ, where the Bellers attend, has reinstituted a Friends of Sam Beller Fund after readers made donations – anonymous and otherwise – toward Sam's expenses not covered by state Medicaid programs for medically dependent children. Contributions have topped several thousand dollars.
And Sam may be able to sit outside soon and watch his siblings play, or be able to use bathroom facilities, thanks to an offer by a Dallas man who wants to pay for an adaptation to the Bellers' Richardson home.
He told Mrs. Beller that after reading about the family, he wanted to spend his money on "something worthwhile." The family suggested a ramp from the family room to the backyard patio or an extension on the ceiling lift that carries Sam from his bedroom to the bathroom.
Finding nurses who can cope with Sam's complex needs has been a struggle. But his story has provided insight to a community health class at Stephen F. Austin State University in Nacogdoches. One nursing student there said her instructor read the article, assigned it to the class and then lectured on it as an example of how to care for families with special-needs children.
Sam also may have gained some new friends. A Highland Park High School football player wants to take Sam to a game. And a classmate of his sister Tevah wrote a letter offering verses from the 23rd Psalm.
Sam also may get to meet more children with special needs from across the state whose parents read the article online. Mrs. Beller has been corresponding every other day with some, and several families may get together in the future.
Based on what she's heard from other families, Mrs. Beller wants to lobby Texas legislators about helping more special-needs children who are on waiting lists for state Medicaid waiver programs and also wants to begin a special-needs ministry at the family's church.
"It's hard to know what your life looks like to the outside, but it's been overwhelmingly positive," Mrs. Beller said. "I think it's been a story of encouragement to others, to know that your struggles don't have to wipe you out as a person, or wipe out your faith."
Robin Galiano Russell is a Dallas freelance writer. Her email is rrscribe@excite.com.
Melanie Burford is a staff photographer.