Monica Beakley figures she needs three plans: "Plan A, plan B, and if I pass away."
Beakley, 47, has metastatic non-small cell adenocarcinoma, a cancer that started in her lungs and spread to her brain, bowel and liver. When she was diagnosed, the doctors gave her five years to live. That was four years and eight months ago.
She travels every three weeks to MD Anderson in Houston for treatments. She’s exhausted, but she has so much to do. She’s the chief caregiver and advocate for her 19-year-old son, Jesse Jakob Estala, a kindhearted kid who gleefully cracks jokes and enjoys "Jurassic Park" and "Step Brothers."
Estala had a critical head injury a decade ago while boating in Port Aransas. He was riding with his neighbors in the boat as it was being pulled up the boat ramp. Somehow, for reasons Beakley still doesn’t understand, her son fell out. The boat trailer’s wheels rolled over his head.
It’s unlikely he will ever live on his own. He is blind and has difficulty speaking.
Beakley and Estala moved to Austin three years ago so he could attend the Texas School for the Blind. Now he’s at McCallum High School, trying to figure out his future before he graduates in two years — a future that might or might not include his mom.
"I’m sad," Estala says, his head dropping into his chest. "I don’t want her to die."
Beakley, a former contract negotiator for health care providers who now gets by on disability checks, doesn’t have the answers. But she wants her son to be happy. To feel proud. To know there’s a place for him in this world.
Plan A would identify resources to help Estala while Beakley is still healthy enough to be at home. That could include work with a therapist who specializes in traumatic brain injury, and opportunities to try devices for the visually impaired.
Plan B would kick in if Beakley became too sick to care for her son: Where would he stay? What other programs could help?
And then there’s the "if I pass away" plan. Beakley hopes it won’t come to that. But this is cancer. Estala would need a home, and funds for his care, and some kind of occupation to give him purpose. He might move in with his father in San Antonio, or find a group home in Austin.
Beakley needs experts — a lawyer who understands special needs, a mediator, an advocate for her son — to help her craft these plans "now," she says. Then she corrects herself: "Yesterday."
"I’m thinking about these things all the time, and I don’t sleep at night," Beakley says. "With this disease, I could get sick very quickly and could probably go very quickly. I don’t know the future. It’s my duty as a parent to make sure he’s taken care of."
Statesman videographer Ana Ramirez contributed to this report.
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