Father whose daughter was born with devastating injuries taught him that our meaning comes not from what we can do or accomplish but from simply being.
By Dave Andrusko
Like many of you, I suspect, we have children in our extended family with devastating injuries. Not often have I read a story that captures the jumble of powerful emotions that sweep over you as you first learn of the gravity of the problems and then begin to come to grips with…what is next?…as did a profile written by Sonja Haller for USA Today.
Her story ran this summer but I just happened upon it today.
And have I been blessed.
Robin Steele was 25, a young husband whose wife, Erica, had her first ultrasound in her eighth month when they received the stunning news followed by even harsher news.
First they learned that their daughter— Kennady —had Hydrocephalus, “water on the brain.” Ms. Haller does not go into detail what that would mean because of what the family learned after Kennady was born.
We know from the account that at birth, Kennady “looked different from other babies.” But Robin saw her as miracle and he was in ecstasy.
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.
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.”
The father was and is a man of faith. We learn he prayed, not a surprise. With that prognosis, it also comes as no surprise that when he came in to visit his wife, who was recovering from a C-Section, he shared the following with her.
“I just came to the conclusion and prayed that God 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.
But God had other options.
“I had no idea there would be a third option. She would not be 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.”
While the doctors never altered their predictions for how long Kennady would live. “But it’s 17 years down the road and she’s really strong,” Steele, now 43, told Haller.
Very few children with this condition live this long, as he and his wife are very aware. They have no expectations she would outlive them.
He wrote on Made Meaningful, the family blog, “Let’s enjoy today. I don’t know what is going to happen next week. Thank God for where we are right now.”
We could stop here and it would be a very encouraging story for anyone. What follows next is of particular significance to pro-lifers.
As they were leaving the hospital, Steele recalled a life-changing note they read on Kennady’s medical chart.
“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?”
Living with Kennady, learning from her, “grew him up,” in a manner of speaking.
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.”
There is this marvelous message that pro-lifers already have written on their hearts:
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.”