Many nights, Valicia sleeps in a chair near Terrell's bed, waking every couple of hours to check on him.
"I will stand and see if that sheet goes up and down," she said.
She hyper-aware of any sounds in the night. "It's just like when you have an infant."
Valicia, who is taking a break from working full-time at her retail job, said she doesn't want to spend more than a few hours away from her son. During the day, she checks on him every 10 or 15 minutes.
"A moment that passes may be the last moment I see him," she said.
She no longer takes life day by day, she said, but instead "literally moment by moment."
"I am still drawing off his strength," she said of Terrell, adding that she also draws from husband Carl and son Cortez. "If all else fails, we draw off our heavenly father."
Terrell, who has been sleeping much more lately, said it helps him that he can talk about anything with his parents, even topics like his will and which symptoms might signal that death is imminent. Still, he said, negative thoughts sometimes haunt him.
"I have my days," he said. "I have my moments."
Valicia and Terrell often refer to dying as "going to sleep," and they want that to happen at home.
"My bigggest fear is he will go to sleep in the hospital," Valicia said. "I have promised him he will not be going to sleep in the hospital."
Laura Ungar has been the Courier-Journal's medical writer since 2004. Major projects have examined Kentucky's poor health, black lung disease, cervical cancer in India and the health insurance crisis among America's middle class. You can follow her series on 
Sam Upshaw, 46, of Louisville, has been a photographer with The Courier-Journal for 22 years. In addition to covering the community on a daily basis, he has visually documented Muhammad Ali, Kentucky's poor health, the University of Louisville's win at the Orange Bowl in Miami and Hurricane Ivan in Florida. Spending time with Terrell, he is inspired by the young man's strength and wisdom, which helps put life's little inconveniences in perspective.
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