A good night's sleep is rare for Judy and James Lee. They are on parenting duty 24/7 for their son, Justin.
Justin, who has cerebral palsy and was born missing parts of his brain, also has a seizure disorder, which has gotten worse lately. He's often silent during his seizures, which means he has to sleep with his parents so they can tell when he needs help. Judy says caring for Justin is a lot like taking care of a newborn.
"You're in that kind of survival mode those first few months, where your baby's schedule is your schedule. And you sleep when they sleep and you eat when they eat. And all your focus and attention is on them," she says.
Except Justin is not a baby. He just turned 16 and weighs 100 pounds. He can't talk, he can't walk and he'll always require around-the-clock care. Like the estimated 17 million people in the U.S. taking care of their special-needs kids, Judy's days largely consist of making sure Justin's needs are met.
He receives music therapy, occupational therapy and tutoring. He also gets physical therapy, and though some may question what effect it may have, James and Judy believe it's about giving Justin the best life they possibly can.
"While physically we know he has so many restrictions, my hope is that cognitively he's able to express what he knows, express his needs and his wants — especially as we get older and other people will be naturally having to care for him," Judy says.
The Sacramento, Calif., couple knows that day is coming. As far as they know Justin has a normal lifespan. They're both in their 50s and have no other children. James says it's something he thinks about often.
"I'm sure there's going to come a time when we're going to need to be cared for ourselves, so there's going to be three of us in here all needing some sort of care. I don't know what's going to happen then," James says. "I really don't know."
Juno Duenas, executive director of Support for Families of Children with Disabilities, says that as parents age, it's important to get a support system in place for the child.
"One technique we've used here is to bring the community together that knows that youth and have a discussion about, 'So what are we going to do in the future?' " Duenas says.
The faith community is a major source of support for James and Judy Lee. Every Sunday the family attends Mass at Sacred Heart Catholic Church in Sacramento. James welcomes people's empathy, but he rejects their pity. He recalled a man at a support group once asking him if he hated God because of Justin's disability.
"I said, 'No, I'm actually thankful that he chose us to take care of Justin,' " he says.
It was faith that helped Judy get through her initial grief and accept Justin's diagnosis.
"Through prayer I've been given just the grace and the strength to meet those challenges and to see the positive, because there are so many positives," Judy says. "I mean, Justin's a great kid. He's sweet. He's loving. I can't help but be happy being his mom."
The Lees also know they're fortunate compared with other families in their situation. James and Judy have flexible work schedules, enough money to buy Justin the ramps and wheelchairs he needs and each other to lean on. They also receive some state help from the In-Home Supportive Services program, which pays Judy about $10 an hour to provide care for Justin.
They hope this will all be enough to care for their son for many years to come.
You can hear and read much more about Judy, James and Justin Lee as well as other family caregivers in KXJZ Capital Public Radio's documentary series, Who Cares.
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