Steps toward a new life
BECKLEY, W.Va. (AP) — Without thought or hesitation, Mike Darby removes a black apron from a post, carefully places it over his son’s neck and ties the strings at his back.
“And when Dad’s not here he does this all by himself,” Mike’s wife Ann jokes as she watches from a few feet away.
Mike and Ann both know their son Kevin doesn’t need his dad’s help, but it can be difficult to break lifelong habits. And it’s no longer every day they have the opportunity to help their son.
Kevin doesn’t need his father’s help as he slides protective goggles over his eyes and begins turning the beginnings of a wooden bowl on a lathe.
So Mike takes photos on his phone while Ann, her face a mixture of pride and wonder, stands back and watches.
In a few hours, the couple will hug Kevin and climb into their Subaru to begin the nearly 3-hour drive from Crozet, Va., back to their home at Flat Top Lake.
But for now, they have contentment, watching Kevin enjoy himself and knowing he’s happy, believing they have made the right decision.
Mike and Ann were married for eight years when they adopted Kevin — just one week old — in August of 1981. Ann’s infertility was one of the side effects of DES (diethylstilbestrol) — a medication her mother and millions of other women took during pregnancy from 1938 to 1971.
But the couple knew soon after they took Kevin home that something was amiss.
“At birth, he was jerky and they said it was due to lack of calcium,” Ann, a retired speech pathologist and preschool special education teacher recalls. “So I knew the early warning signs of cerebral palsy and he had those. He didn’t use his left arm like the right and babies use both arms equally.”
What is cerebral palsy?
From the Mayo Clinic: “Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by damage that occurs to the immature, developing brain, most often before birth.
“Signs and symptoms appear during infancy or preschool years. In general, cerebral palsy causes impaired movement associated with abnormal reflexes, floppiness or rigidity of the limbs and trunk, abnormal posture, involuntary movements, unsteady walking, or some combination of these.
“People with cerebral palsy may have problems swallowing and commonly have eye muscle imbalance, in which the eyes don’t focus on the same object. People with cerebral palsy also may suffer reduced range of motion at various joints of their bodies due to muscle stiffness.
“Cerebral palsy’s effect on functional abilities varies greatly. Some affected people can walk while others can’t. Some people show normal or nearnormal intellectual capacity, but others may have intellectual disabilities. Epilepsy, blindness or deafness also may be present.”
Her suspicious were confirmed at Kevin’s fourth- or fifth-month baby visit when she asked the doctor.
“He said, ‘Take him home and love him. He’ll never walk or talk.’ ”
“Devastating,” Mike says, of both the diagnosis and prognosis. “Life changing.”
But Ann’s training and the couple’s hearts told them that was not the end of Kevin’s story.
And so began a lifetime of hard work and a commitment — from both parents and son — to making the most of life.
At close 3 years old, after about 1,000 hours of therapy — both physical therapy and daily therapy at home from Mike and Ann, Kevin took his first shaky steps.
“He wasn’t walking independently,” Mike says. “Just a few steps between us, but he was walking.”
Even after Kevin started attending Stanaford Elementary School, he maintained a strenuous physical therapy regime and had multiple surgeries.
“We had to try everything,” Mike says. “Whatever we had access to, we were going to try.”
Even though Kevin had learned to walk, cerebral palsy caused his legs to draw up with spasticity, a condition in which certain muscles are continuously contracted. Surgeons at UVa Children’s Hospital performed muscle releases, cutting 7-inch incisions into both legs to weaken the muscles and then placing him in full-length casts with a bar for seven weeks to hold his legs apart.
After the second muscle release, the spasticity returned and the family traveled to St. Louis Children’s Hospital where Kevin underwent a dorsal rhizotomy, a surgical procedure performed on the lower spinal cord where the nerves that lead to too much muscle tone, which is a condition of cerebral palsy and spasticity, are then cut.
The surgery proved successful.
Kevin received a modified diploma from Woodrow Wilson High School when he was 21 and began working at the recruiting office in Beckley with a job coach.
But though life was full for the entire family, in 2011, Mike and Ann, ever the planners, began to look at the future.
One of Mike’s sisters found a long-term life sharing community with adults with disabilities in Kentucky and another found one in Crozet, Va.
So the couple traveled to Crozet to tour Innisfree Village, where a mix of about 40 co-workers — the name given to the residents — live, play, work and share their lives.
Innisfree’s residents range in age from 21 to 89, but it only accepts adults ages 21 to 35.
Kevin was 31.
They took Kevin for a two-week trial.
“He never took his clothes out of his suitcase,” Mike says. “He did fine, but he wasn’t staying.
After the 2-week trial, they did another month.
Now, Kevin navigates the serene country setting of Innisfree Village as though he’s lived his entire life.
He has his bedroom in a house he shares with four co-workers and two volunteers. Innisfree has full-time staff members, but volunteers from throughout the country and around the world commit to one-year contracts, much like the Peace Corps, and share their lives, working with and helping the co-workers.
In the bakery, Kevin helps make bread — two types each day — and assists with granola, measuring flour and oats for mixing. The bread the co-workers bake each day, with help from the head baker and volunteers, is delivered to the different houses for dinner. Innisfree sells granola to several stores in the Crozet and Charlottesville area.
At the farm, Kevin hammers new fencing into the ground as Innisfree’s 400 chickens are relocated to a new spot for the week. He then helps co-workers collect eggs.
Kevin also works in the garden, which grows everything from sweet potatoes and tomatoes to carrots, spinach, peppers, kale and lettuce.
His favorite workstation is woodshop, where, with some assistance, he and other co-workers craft bottle openers, cutting boards, Lazy Susans and more.
Communication is difficult for Kevin. Mike and Ann understand him well, but technology has helped tremendously as Kevin’s iPhone predicts what he wants to say.
“I’m thinking I’ll be a volunteer at the Beckley Fire Department,” Mike says of a recent text from Kevin.
“He always has dreams. Huge dreams.”
Information from: The Register-Herald, http://www.register-herald.com