Amber Ramirez was 9 when a rare and progressive form of epilepsy began devouring her brain tissue like a hungry Pac-Man, giving her debilitating seizures. Six years later, in 1999, the Lincoln girl's story gained nationwide attention when doctors in Baltimore performed a hemispherectory, removing half of her brain.
It was her best chance for a normal life.
"I don't want to live with my mom for the rest of my life," she said shortly before her surgery. "God, that's a scary thought."
Amber's mom still lives in the little yellow house in north Lincoln where it all started.
Amber came back there to recover that summer, a 15-year-old with red hair and freckles like her mom, a girl whose story made CNN after neurosurgeons at John Hopkins cut out half of her brain.
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A decade has passed.
Sheri Ramirez is at Valentino's, sharing a booth with her only child.
They're here to celebrate Amber's birthday -- Jan. 13, 1984.
Lucky 13. It was a Friday, the first time. A perfect redheaded girl born at 8:58 p.m. back in North Platte, where Sheri grew up.
The second time was a Tuesday. Surgery lasted 12 hours, a team of doctors performing the most delicate of operations on July 13, 1999.
Lucky 13, again.
Sheri's best chance of getting her girl back.
Amber grabs a tray, balances it with her left hand and heads for the buffet.
Her mom follows, sliding two slices of hamburger pizza onto her daughter's plate.
Amber lost the use of her right side after the surgery.
That was part of the deal.
Lose the left side of her brain -- the side that governs speech and movement on the right -- and lose the seizures that started coming without warning when Amber was in the fourth grade, as many as 100 in a day.
After surgery, Amber spent a year in therapy learning how to walk and talk again.
She returned to school in a vocational training program, and graduated from Lincoln High.
She worked in fast food. She worked at a day care.
She dated boys. Went to parties. Drove her mom crazy.
For a while she lived in the basement of the yellow house.
Last summer she moved out with three girlfriends.
She got her own apartment after Christmas.
"She's working and living on her own now," her mom says.
"That's where she wanted to be."
***
It's a dreary Thursday and Amber tugs at a shop vac with her left arm, a green dolphin tattoo glowing from her bicep.
She has a skull, too. And a heart that says "Mom."
Amber hits a switch and the vac sucks up dog hair.
She works part-time at Canine Design, cleaning up after the groomers.
Amber likes animals. She likes kids. She likes her new boyfriend, Steve.
She was with friends at a bar this fall when he sat down across the table.
She told him about the surgery and the seizures.
He thought she was sweet, he said a few days earlier, sitting beside her on the couch in her mom's yellow house.
They talked on the phone every night.
Sometimes words come easy. Sometimes they get stuck in her mind and she can't pull them out.
"I think the language has been the most difficult," her mom says. "Maybe the most disappointing thing for me.
Amber yawns. She whispers in her boyfriend's ear.
Sheri watches from across the room.
For years her life revolved around Amber.
Sheri's got a boyfriend now. A good guy, divorced with five kids. A man who cooks and can fix things around the house.
She's survived cancer.
Everyone thought they would fall apart that summer, two years ago. Her chemo and radiation, Amber out on her own for the first time.
"But we didn't. Did we, Amber?"
***
The mother hands her daughter a silver gift bag.
Happy birthday.
Amber pulls out framed picture.
"Life is a challenge," it reads along the border. "Meet it."
"It's for your apartment," Sheri says. "It matches all your stuff."
Next comes a cream-colored sweater.
"Is that OK?"
Amber nods.
Amber picks at her pasta.
She had pizza for lunch today, she says.
Sheri shakes her head across the table.
"Seriously, Amber? Seriously?"
And guess what, Amber says, giggling.
She's going out for pizza again tomorrow night with Steve.
"We're going to that one place..."
"The Isles?"
"Yeah, Isles. It's so good"
Steve will drive because Amber never did get her license.
That's one goal she never reached.
"I think my mom's afraid," she says.
Mom and daughter still negotiate Amber's life. But more and more Amber is her own woman.
Sheri made a pact with herself this year.
She'd let go. Let Amber make her own decisions, her own mistakes.
She checks in about once a day.
"We complain about our lives."
It seems normal.
Reach Cindy Lange-Kubick at 473-7218 or clangekubick@journalstar.com
