Uphill battle: Family keeps hope alive as they provide for disabled child
By MARY STEVENS DECKER
Redmond Reporter Reporter
November 26, 2008 · Updated 10:48 AM
As Don and Shawna Graves awaken each day, it is with a weariness that few parents in Redmond, or anywhere, can ever comprehend.
This attractive young couple — he, a former rodeo steer wrestler and she, a former TV producer — share their Redmond home with two beautiful sons, Cody, who just turned four, and Casey, his 16-month old brother.
Cody suffers from a catastrophic form of epilepsy, as well as autism and mental retardation.
This Sunday, Don will run 26 miles in the Seattle Marathon, and plans to cross the finish line while pushing Cody in his stroller, to help raise funds for the intensive therapies Cody needs. He’s calling himself and his son “Team Cody” and his goal “Cody’s Hope.”
NO KNOWN CAUSE
Shawna’s pregnancy was uneventful and Cody’s development was normal until he was six months old.
Then, Don noted, “He was waking up from a nap and started doing this.” He demonstrated an abrupt movement of hunching over, with a slight grimace. “He started doing weird crunches,” Don continued. “We videotaped it and showed to a pediatrician, who said it was gas. But then he did it in front of her, a whole cluster.”
They were referred to a pediatric neurologist and spent several anxious days in the hospital.
The diagnosis, said Shawna, was “infantile spasms.” That didn’t sound so bad, until the Graves were told that 95 percent of such children become acutely mentally disabled.
“We were told that he would lose his smile, his laugh, his eye contact, that he would deteriorate day by day,” Shawna stated. “That’s what we left the hospital with.”
The couple was also told that Cody would never walk, talk or learn any skills. Meanwhile, their precious little boy was having hundreds of seizures a day.
Shawna no longer works outside of the home. And Don, who is employed in the aerospace industry, said, “I try as much as possible to not let it affect work. It’s very hard to compartmentalize, to turn it on and off and say, ‘I’m at work now.’”
Yet there is no choice but to drag themselves out of bed each day, praying for any sense of normalcy, for any relief from the constant stress.
“This is the lot in life we’ve been given,” said Shawna.
And life must go on.
In addition to paying their household bills, the Graves are spending tens of thousands of dollars each year on therapies for Cody that medical insurance won’t cover.
“We haven’t slept in the same bed for the past four years,” Shawna added, referring to herself and her husband. “One of us sleeps with Cody, one with Casey. Cody has seizures every night. Sleep deprivation takes its toll. I spend my life managing his health issues. There is not much fun. We’ve spent our vacation times visiting hospitals.”
At times, she admitted, “It feels like a prison sentence because it’s never going to end. It’s hard to live with such desperation but we choose hope.”
Preparing for the marathon has been a healthy diversion, said the Graves.
“It’s our attempt to keep some dreams alive,” Shawna noted. “Don didn’t love running, but Cody loves the motion of being in the stroller. It’s elevation from our daily life. Our finish line is not the 26-mile mark. It’s to make Cody’s life better in any way we can.”
Children with health issues as devastating as Cody’s are best served by receiving 35-40 hours of intensive therapies each week, including ABA (Applied Behavior Analysis), Floortime, speech therapy, physical and occupational therapies. Cody gets about 10-15 hours of therapies per week, depending on what his parents can afford.
He’s still on high doses of anti-seizure medicine, has sensory integration problems and self-injurious behaviors such as banging his head or biting his hand. Such behaviors are common among autistic children who can not verbalize what they are feeling.
“His battle is Mt. Everest. He climbs Mt. Everest every day, but his therapy time is rich and meaningful,” Shawna insisted. Don agreed, “We were told he wouldn’t crawl, he wouldn’t walk, couldn’t learn.”
Yet Cody now is walking, intermittently smiling and laughing and beginning to communicate with pictures and sign language. His parents can only imagine what progress he might make with more medical intervention.
As bleak as their day-to-day existence may seem, Don and Shawna delight in seeing Cody’s every small sign of improvement, as well as watching Casey develop appropriately. They said that family and friends, especially at Calvary Chapel Eastside in Bellevue, have been immeasurably supportive.
They’re grateful for “finding a place where people would walk alongside us,” said Shawna. “Our pastor brings us meals, church members babysit one-on-one with Cody so we can go to church like a normal family. ... Faith will see us through. Faith in God, faith in each other and faith in Cody.”
The couple also praised Dr. Russell Saneto and others at Children’s Hospital in Seattle, “who give the best care ever.”
THE FINAL STRETCH
Don started training for the Seattle Marathon just eight weeks ago, running Mondays, Wednesdays and Fridays at lunchtime and taking long runs on Saturdays, with Cody in tow.
“Cody likes to be outside but he’s sensitive to sunlight, so he wears sunglasses,” said Don. “As we’re out running, I’ve introduced Cody to some people and now when they see us, they’re cheering, ‘Go, Cody, go!’”
A 26-mile run would be too taxing for Cody — he would likely have several seizures during the duration of more than four hours, his parents pointed out.
But as Don nears the end of the race — coincidentally, as the only parent allowed to run with a child in a stroller — Cody will be united with his dad.
Shawna hopes this will be the first of many ways that Don, a sports enthusiast, can somehow share sports with their firstborn son. It’s not the way most fathers and sons bond through sports, but it will have to suffice.
Ultimately, Don and Shawna’s greatest reward would be to hear Cody speak, if only to say three words: “I love you.”
For information about the Graves family and how you can support Cody’s Hope, visit www.crazyforcody.com or e-mail email@example.com.Contact Redmond Reporter Reporter Mary Stevens Decker at firstname.lastname@example.org or (425) 867-0353, ext. 5052.