Aug. 24, 2013 at 8:43 AM ET
It’s a long journey from a fun-loving pro-wrestler to a stay-at-home dad caring for a child who can’t talk or walk and depends on him around the clock.
Watching over his softly silent 7-year-old daughter at his home right outside Fort Bragg, N.C., Steven Sharp calls her birth on Feb. 2, 2006 both the greatest and the worst day of his life.
“I was standing right there when my daughter was pulled out by the doctor,” Sharp, 39, told TODAY. “She was just as blue as can be, had to be resuscitated.”
Brain damaged since arriving into the world, Samantha Grace Sharp was given two years to live, but that grim life sentence has come and gone -- and she is hanging on. Still, her dad Steven, who has devoted himself to her care, is terrified she might be running out of time. So he’s trying to create a legacy for the little girl with a documentary he hopes will inspire others.
“We’ve had to think about the end of her life,” said Carlene Sharp, 40, Samantha’s mom. “At any moment, we could wake up and she can be gone and that is kind of mind-numbing and horrible to think about.”
Both their voices break when they talk about the child they alternately call Sam and “Amazing Grace.” She was long awaited: their firstborn and coming after Carlene endured four miscarriages.
The couple first met in Arkansas when he was a pro-wrestler – “never famous, but I sure had a lot of fun trying,” he said.
She was a special education teacher who saw some of his wrestling matches when they were dating.
In 2006, the Sharps were living in Germany, where a pregnant Carlene was teaching hearing-impaired U.S. Army kids in Kaiserslautern -- “K-town”, as it’s known to many Americans. She gave birth at the Landstuhl Regional Medical Center, a U.S. military hospital.
The baby suffered hypoxic ischemic encephalopathy, Carlene said, a condition in which the brain does not receive enough oxygen. The resulting injury meant the girl lost most of the function in her cortex, the part of the brain that generates thoughts, solves problems and controls voluntary movement.
“From what was described to me, (it) is basically the part that makes you, you and most of that is gone,” he said.
Carlene remembers wondering whether the family would stay intact after the awful news. As a special education teacher, she had seen dads take off after their children were diagnosed with health problems and worried the same thing would happen to her.
“I just got out of the hospital having her and I started crying. He said, ‘What’s wrong?’ and I said, ‘You’re going to leave me. That’s just the way it is.’ And he said, ‘Nope, I’m not going to,’ she recalled.
The couple returned to the U.S. in 2006 and settled in Fayetteville, N.C., where Carlene is a teacher at nearby Fort Bragg. The family grew to include their son Wyatt, who is 5. There were debts and money problems, including a bankruptcy in 2006, because of Samantha's medical bills. But the family is on their way to a better financial situation, Carlene said.
With his wife’s job providing health insurance, Steven has taken on the role of stay-at-home dad and nurse. He changes his daughter’s diapers, administers her medicine, feeds her and gives her stretches.
Samantha can’t walk or talk – though she has some movement in her arms and legs – and is dependent on her parents’ care 24 hours a day. She’s basically an infant in the body of a 7 year-old, her mom noted. She calls her husband's care amazing.
“It is truly a blessing that I have him because I don’t know many men… who would have hung around,” Carlene said, adding she sees a strong bond between father and daughter. “Sam will always be daddy’s girl. Always and forever.”
Steven likes to think the girl recognizes him as her dad.
“I talk to her like she understands every word I say,” he said.
His big mission now is to create a lasting testament to his Samantha's strength and struggle. She’s been hospitalized 22 times, requiring resuscitation five times, he said, so he wonders how much time he has left with his daughter. Steven wants to shoot and produce a documentary about his girl, showing people they can overcome life’s setbacks. The film shows Steven caring for his "Amazing Grace," intercut with text describing his thoughts and emotions. "After years of trying to carve out a place and purpose in this world it’s clear to me that I was meant to do this," one reads. He’s trying to raise $10,000 online, which he says will cover the editing budget for the film.
Carlene was reluctant about the project at first -- not thrilled about the idea of putting the family “out there” and inviting comments from “nasty people,” she said. But she has changed her mind because she believes the documentary can educate parents, especially dads.
Steven said Samantha has changed his life.
“I am trying to create a legacy to show people that adversity is there to be overcome and that’s what I want her legacy to be.”
Read more: Amazing Grace and Dad