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Parents Caring for Disabled Children Daily Rely on Faith, Community Support

( [email protected] ) Jul 08, 2014 10:49 AM EDT
Around the world, 17 million parents care for their special-needs children, truly defining the meaning of unconditional love. As the population ages, it becomes increasingly important that a plan is set for the future of these children and their parents.
Justin Lee just turned 16. To celebrate, his parents rented out a roller rink and invited other children with cerebral palsy and their families. www.npr.com

Judy and James Lee understand the true meaning of unconditional love.

Their son Justin was born with cerebral palsy and is missing parts of his brain, making him unable to speak or express much emotion.

In addition, the sixteen year old has a seizure disorder, which has gotten worse lately. Many times, he is silent during his seizures, which means he has to sleep with his parents so they can tell when he needs help.

Judy's days are comprised of taking care of her son, who needs round-the-clock care. Justin is given several sessions of physical, occupational and music therapy daily, as Judy hopes someday he will be able to somewhat express his wishes.

"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 told NPR.

Both James and Judy are in their fifties, and are unsure of what the future holds for both them and their son.

"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."

However, while this lifestyle isn't easy, the couple says they are able to care for their disabled son with joy and patience because of their faith in God.

James remembers one specific event, where a man at a support group once asked 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,' " James answered.

The couple, who weekly attend Mass at Sacred Heart Catholic Church in Sacramento, say their church family is a major source of support. The family also prays together every morning, providing strength for the day ahead.  

"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 are just one of an estimated 17 million families in the United States who care for their special-needs children. As parents get older, it's important to get a support system in place for the child, says Juno Duenas, executive director of Support Families of Children with Disabilities, a non-profit organization that provides families of children with disabilities with the information, resources and support to make the best choices for their children

"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?' " says Duenas.

"In dealing with a child with disabilities, often you feel very alone," says Mackenzie Smith, who has a seven year old special needs daughter. "Having a church family rally around you, or having organizations like SFCD provide you with physical, mental and emotional care is crucial to supporting both the child and the parents."

To learn more about special needs children and help families around the country like the Lees, visit the website for Support Families of Children with Disabilities.