Every day, Valicia must decide: Is it time to increase Terrell's medication so that it controls his ever-increasing pain but also sedates him so much he can no longer interact with the world?

"The thought of him just sleeping away the day -- I can't even handle that. Being a mom, it's really hard to make that choice, because at the same time I see him suffering," she told me yesterday. "It's a choice I make every second of every day."

Valicia often asks herself if she's making the right choice, and whether she's making it for him or for herself. She realizes it's the beginning of letting go of her son -- even as she, and Terrell, cling fiercely to life.

Terrell is sleeping more than ever as sickle cell disease continues to take its toll. Valicia said her son rarely stays awake for an hour at a time anymore, and sometimes talks to her with his eyes closed. His breathing is growing more and more labored.

"The last two nights have been kind of rough for him because of his breathing," Valicia said.

They've been rough for her, too. She sleeps in Terrell's room now, and slept only four hours in two days this week. She wakes up to give him his medications, check his breathing and just watch him.

"I don't even think about it. I just do it," she said. "My body has adapted to sleeping less and doing more."

On a recent night, Valicia slept at the foot of Terrell's bed and held his hand so that he could feel her presence.

Terrell said it's comforting to have her nearby. And despite his pain, he said he's still fighting to stay awake, and alive.

"I hate sleeping the day away," he said, reclining on a couch in his family room with a coloring book. "You feel like you're missing out on something."

Valicia tells me that Terrell is now in Norton Hospital's hospice unit.

"Terrell is doing poorly, and needed more assistance with pain control if that is possible to do any more," she said.

The family has been struggling with pain control for a few weeks now.

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."

Carl Starks said his son's unfaltering spirit helps him to face these days of uncertainty.

"He's our inspiration," Carl said of Terrell. "His voice may be weaker, but his spirit is the same."

Carl added: "I always say I'm not made out of the same stuff" as Terrell and his late sister Dominique.

As Terrell's sickle cell disease takes its inevitable course, Carl and Terrell said they try to stay positive as much as they can. But the negative feelings sometimes wash over them like a flood.

"There's no way to suppress them. Once they hit, you deal with it because you have no choice," he said. "It's how you deal with it that makes the difference."


said he

Terrell has such a high threshold for pain that it can be difficult for his parents to know when he's really hurting. But last Thursday it was clear. Terrell was balled up on the family room couch, crying.

Pain that had started in his knee gradually spread throughout his body. He was more short of breath than usual. Carl and Valicia brought him to Norton Hospital downtown, where doctors and nurses increased his doses of steroids, anti-anxiety medicine and Delotid pain medication. In fact, they gave the pain medication intravenously. "Orally, it stopped working," Carl said.

At least one parent stayed with Terrell the entire time he was in the hospital, where doctors worked to manage his pain and get his dosages right. He was discharged Monday at 5 p.m. with a Delotid pump.

As I was speaking with Carl yesterday, Terrell walked into the family room in obvious pain, tethered to the ever-present oxygen machine. His face was swollen from the steroids. He sat down on the couch, and his dog Ozzy snuggled next to him.

Terrell said he was glad to be home and hopes he doesn't have to go the hospital again. "Anything I can do at home would be much better," he said.

Carl said Terrell has already signed a "Do Not Resusitate" order, asking doctors not to use heroic measures to save him. They would like him to live out his life at home.

Terrell said yesterday that the pain was still excruciating, and he was waiting for the pain medication to relieve it -- at least somewhat.

"Right now it's everywhere," he said of the pain.

At one point, his hand on his dog's belly, Terrell drifted off to sleep. When he awoke, he laughed with Carl about memories of a playhouse they once had when they lived in Michigan.

He's determined not to the let the pain keep him from laughing.

Valicia tells me that Terrell is now home from the hospital.

He was discharged at 5 p.m. yesterday.

I talked to Valicia this morning, and she said Terrell is now at Norton Hospital downtown.

Valicia didn't have time to give me details; she was on her way to visit Terrell. But she and Carl told Sam last week that his breathing was becoming more labored, and they were concerned about his condition.