Mila Koumpilova, Published December 21 2008
Breaking the silence: Couple help grandchild with cerebral palsy
22-year-old grandson, Malachi. But they’ve forged a bond that’s every bit as close and warm as a more conventional familial relationship.
Elaine and her husband, Wallace, have cared for Malachi since he was born inside a fragile body that moves almost entirely of its own accord. The Moorhead couple learned to glean his moods and needs through clues more visceral than words or gestures.
But when Elaine found out about a digital-age device that could let her peek into her grandson’s mind, a deep sense of possibility flooded her.
At times when she anxiously second-guesses her read on Malachi, Elaine wishes he could speak his own thoughts. When she looks ahead to the day her own body will start caving in to time, she worries others might not understand him the way she does.
“We’ve always had our way of communicating, but I’m thinking about his future when we’re no longer here,” Elaine says.
And perhaps, a newfound ability to express himself would silence those who over the years have tacitly or openly questioned the meaning of Malachi’s life, so fettered by physical limitation.
The Larsons’ story over the past 22 years has been one of devotion flouting the constraints of the human body. Over the past year, theirs has become a story of cutting-edge technology powered by old-school faith and unconditional love.
Mind over matter
Elaine fell in love with Malachi the day he was born, too sick for his parents, a young military family constantly on the move, to take on. The doctors diagnosed him with severe cerebral palsy. Elaine and Wallace, who had raised six children, rallied to raise one more.
In the following years, Malachi would return to the hospital again and again. Each time, his grandparents brought a plush animal to him, and the resulting menagerie now covers almost every surface in the bedroom Malachi and his grandparents share.
Elaine keeps her age a secret; her husband turned 80 this year. They hope Malachi’s parents will take over when they can no longer care for him.
Cerebral palsy robbed Malachi of sway over his body. He has an open-mouthed grin that instantly spreads across his face; but he lacks the finer muscle control needed to raise an eyebrow or muster a frown. His arms are strong, but they have a mind of their own. In school, Malachi couldn’t hit the switch on devices other students used to play prerecorded statements.
His Moorhead High School occupational therapist, Kevin Anderson, says Malachi was among the students facing the steepest physical hurdles in his almost two decades of teaching. Until his graduation last year, Malachi was “more of an observer,” his head propped back on his wheelchair headrest, his dark eyes darting restlessly. Because of his physical limitations, Anderson says, it’s hard to gauge if his disease ravaged his brain as it did his body.
However, Elaine and Wallace don’t need an IQ test to know:
“We feel Malachi is intelligent,” Elaine says. “He knows a lot, but because of his disability, he can’t express it.”
When Malachi doesn’t like something – noisy crowds or watching television alone – he arches his neck and makes a guttural sound like clearing his throat. When his grandma joins him for his nightly routine of watching “Wheel of Fortune,” he flashes his toothy grin.
He laughs at former high school teacher Marilyn Larson’s jokes. He likes company, and he gets a bit flirty when young ladies pay him attention.
“He is very happy and very cheerful,” Wallace says. “He doesn’t want to be pushed off to the side.”
What gets to Elaine is how often strangers look at Malachi and don’t really see him. A petite woman with neat, tight curls and thin-rimmed glasses, she deflects pitying glances with an upbeat smile.
When Malachi was a toddler, Elaine held him in her arms at a Hardee’s, where they stopped on the way back from three-times-a-week therapy. He was fussy in his way, arching his neck. Two well-meaning elderly ladies paused by the Larsons’ table.
“Poor thing,” one of them said, pleasantly. “Wouldn’t it be better for him if he were dead?”
An indignant Elaine didn’t respond. She rises at dawn each day to answer that question without saying a word.
A grandmother of 12, Elaine tends to Malachi without any help from caregivers. She disconnects the feeding tube that pumps nourishment into his belly overnight. She administers spasticity and anti-seizure medication. She shaves him, washes him and gets him dressed.
Then, she summons a startling strength for her 100-pound frame and lifts her 90-pound grandson into his wheelchair. Getting him ready for the day takes a good hour and a half; it takes roughly as long to get him ready for bed at night.
In between, Elaine works part time at a Fargo retirement community. Wallace drives to Elizabeth and Pelican Rapids on Sundays to serve as a vacancy pastor. Medicare, they say, doesn’t cover everything.
“I’ve never met two more dedicated parents,” said Larson, Malachi’s former teacher. “It’s just amazing.”
To Elaine, taking care of Malachi is no chore. At first blush, he seems to glide through life quietly, making hardly a ripple in his surroundings. But he’s reshaped his grandparents’ lives profoundly, keeping old age and complacency at bay. His high spirits seemingly unchecked by his body’s failings, he silently reminds them to enjoy each day.
“You have to keep going,” Elaine says. “And I want to keep going. I don’t want to sit down and retire.”
“No,” Elaine, now thinks, she should have told that lady in Hardee’s, it would not be better if Malachi were dead.
But sometimes, Elaine wishes things were a bit different. She wishes he could tell her what’s wrong when he wakes up groaning in his bed next to his grandparents’. She kisses his forehead, tells him, “Malachi, everything is all right,” and leaves the light on.
She wants to ask him, “Are you happy with what I do for you?”
Then, Larson told Elaine and Wallace about Brainfingers, one in a new generation of hands-free computer control devices that tap brainwaves and facial muscles. The device could give Malachi a chance to communicate. The Larsons knew they wanted it.
Readers can reach Forum reporter Mila Koumpilova at (701) 241-5529
Today: Grandparents Elaine and Wallace Larson have raised their 22-year-old grandson, Malachi, since birth. However, due to his cerebral palsy, Malachi has never been able to communicate verbally with them.
Monday: Last year, the Larsons learned of a new technology that gives them hope they will one day be able to communicate directly with Malachi.