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."