Shawn and Megan Guess: Parents battle own health worries and children's

Nov. 26--Shawn and Megan Guess sit at their dinner table, a calendar overrun with a daunting schedule of doctor appointments and school activities laid out in front of them.

Bright-eyed Kylie, 9, is reading in the other room as she does every afternoon after school. Curly-haired Carl, 3, cheerfully plays with his Legos in the small living room and shows off the Batman costume he wore for Halloween.

It seems all so normal, and the Guesses did have a normal life at one point. They just can't remember when.

Instead, they cope with a dark reality on a daily basis of a mountain of medical bills and student-loan debt approaching $41,000, and, though overwhelming, fight through the depression and the despair as they try to regain some normalcy.

Shawn Guess, 39, can no longer work because of insomnia and the constant daily headaches from his inoperable, grade 2 glioma brain tumor. "We had a good life once," he says.

Shawn Guess knew when he began experiencing constant headaches that something wasn't right. He was forced to give up his job as an electrician at the South Texas Nuclear Plant in Bay City. His pea-sized tumor hasn't grown but might, his doctors tell him.

"The pain never stops," Shawn Guess says. "That was my dream job. But now I go to sleep with a headache, and I wake up with a headache."

In between, he cares for their two children as a stay-at-home dad. Kylie was born without fully developed lungs and has juvenile idiopathic arthritis and asthma. She's undergone intensive physical therapy and needed injections in her wrists.

Carl has a speech delay and doesn't speak in complete sentences.

Megan Guess, 34, worked as the breadwinner until she had to stop working as a registered labor and delivery nurse after being diagnosed with debilitating common variable immune deficiency, which robs her of flexibility in her joints and the ability to fight off disease.

"Every cold, every flu, she was always sick," Shawn Guess says of his wife. "She's always got bronchitis. She'd catch everything that was around. She'd get pneumonia at the drop of a hat."

Because of this, Meagan Guess missed 17 days of work last year and had to go on disability insurance. "Some days, I can't get out of bed. My body just can't ...," Megan Guess says as her voice trails off. She's also undergone a cornea transplant in her left eye but would like to return to school for a teaching career.

"We're in a holding pattern," Shawn Guess says. "Unless some miracle happens, my headaches will never go away. And (Meagan's condition) has gotten steadily worse. She falls very easily and goes down like a sack of potatoes."

Yet, they persist and have come to grips with the fact they won't ever be totally healthy. Or financially stable, as their income has diminished to just disability insurance.

"We had a normal life once, but it is what it is," Shawn Guess says.

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