A dad prayed his daughter would be healed or die. Now he praises a 'third option'
By Sonja Haller
She excused herself and said the doctor would need to speak with them. His wife, Erica, was interested in becoming a midwife and wanted a home birth. This first and only ultrasound in her pregnancy's eighth month was to confirm everything was OK.
The doctor departed shocking news.
They learned they had a daughter that day who had fluid on the brain, called Hydrocephalus. But it wasn't until eight weeks after her birth, that they discovered the daughter they named Kennady also had Alobar Holoprosencephaly, a rare, fatal disease in which the brain's two hemispheres fail to completely separate.
Doctors gave Kennady six months to 2 years to live.
A man of faith, Steele prayed.
Kennady looked different from other babies. But he was an ecstatic father, too. She was a miracle! Then doctors told him her condition was much worse than they originally thought. "Go home and enjoy her while you have her," doctors told him.
He was 25.
He visited Kennady in the Neonatal Intensive Care Unit and then headed to Erica's hospital bed, where she lay recovering from a cesarean section and told her that he just finished praying for two things.
"I just came to the conclusion and prayed that G-d would heal her and that she would come out of this normal or that God would take her and she would be in Heaven," he recalled saying to his wife in an interview with USA TODAY. "I had no idea there would be a third option. She would not healed. She would not die. Or that our lives would be healthy, strong and better because of it. My mind could not frame that would even be possible."
Doctors never did revise their life expectancy for Kennady.
"But it's 17 years down the road and she's really strong," said Steele, 43.
The pastor at a church in San Marcos, Texas, he said his research has found very few cases of children with Holoprosencephaly living beyond childhood.
Kennady doesn't walk, talk or eat with her mouth or use her hands. She requires 24-hour care. But she smiles when she's joyful or communicates her frustration with her facial expressions.
Steele said before Kennady even left the hospital something written on her medical chart changed the course of both their lives. For the better.
"The doctor wrote, 'The parents understand that there is no chance of their daughter having a meaningful life.’ It was devastating. First of all, they had never used that terminology. But basically it set us on a journey to discover where does this meaning come from and who determines it? What would she have to do for life to have meaning?"
Along the journey, Erica, 41, became a midwife and the couple had two sons, Jude, 15 and Avery, 13.
Steele said he grew from being an "arrogant" "sheltered" 25-year-old to pastor of his own church. People ask him where he went to seminary school.
"I didn't," he said. "I got my degree in marketing. I'm the pastor of a church now that's pretty successful. But I say Kennady was my seminary. She's the one who taught me who God is and who really shaped my heart."
When Kennady was young and he was working with children in the ministry, Steele said he used to tell people, "if you need help, pray. And then get over it, basically. Her whole situation changed my outlook."
Over the years, he said, Kennady taught him to accept what is and that a person’s meaning comes not from they can do or accomplish but from simply being. "We're human beings," he said, "not human doings."
"She is an absolute joy just to be around and she loves everybody," he said. "She faces so much physical pain and frustrations with her body. We can tell she's frustrated by her face, but at the same time, she has so much peace in her life. And it's a really cool example to stay rooted in that peace."
She doesn't have to do anything to have a meaningful life, Steele said he discovered. "She just has to be who she is," he said.
Steele and his wife write about Kennady and her physical ups and downs on the family blog called Made Meaningful.
On Kennady's 17th birthday in November, Steele wrote that he and his wife have "lived in a perpetual state of being ready for her to die" when she would contract something like pneumonia. Especially when Facebook friends posted updates of children that had died with Kennady's same diagnosis.
Now they don't feel death is as imminent as they once thought. Kennady even goes to public school now and can communicate yes or no answers with her head. But they also don't relax into thinking she'll outlive them. "Let’s enjoy today. I don’t know what is going to happen next week. Thank G-d for where we are right now," he writes.
That's always been Kennady's message to Steele and his family and by proxy, Steele's message to impart to everyone else. Because that, he said, is what makes life meaningful. Being in the now.
"If you think you're worth something or not worth something because of what you do, it will be an insatiable journey and you will not be satisfied," he said. "Because there's always somebody who has something more or something more out there to do."
He added: "I think we can learn a lot from Kennady."