Sunday, June 20, 2010

The Boys

Many years ago, Paul and I were sitting in the living room reading the Sunday paper. Kurt was four-years-old and I was still trying to figure out how to be a parent of a special needs child.  
The neurologist had told us our son had a severe seizure disorder called Lennox-Gastaut syndrome. Not only would he have life-threatening seizures, but would also become developmentally delayed. I had spent many hours wondering what that meant for Kurt.

"Paul," I said, "how do you see Kurt's future?'

Paul shrugged.

"I mean, do you see him having a job and living on his own?"

"Maybe," he said, turning the page of the sports section.

Not giving up on a discussion, I said, "Do you see us getting the seizures under control?"

"Yeah, I hope so."

I was still dreaming that we would stop the seizures and Kurt would not be disabled. "I hope he catches up and everything will be fine." I sat for a moment, watching Paul read and waiting for him to jump in before I realized he thought the conversation was over. "What do you think Kurt's future will be like?"

He gave up and put the paper on his lap. "I think that Kurt will be Kurt."

"What does that mean?" 

"You know, Kurt will be Kurt."

"No, I don't know what that means."

"Whatever abilities he has will be fine. I will love him no matter what," Paul said. "We don't know what progress he'll make and it doesn't matter, Kurt will be Kurt."

We sat silently then, and Paul turned back to the sports section. I stared blindly at the maple tree in the front yard. I was surprised by his acceptance. Yes, I would always love Kurt. But I felt this need to beat the tar out of epilepsy and find whatever methods he needed to learn.

Paul had been just as much an advocate for Kurt as I had. But this consent that our son might have a disability was beyond me.

What I have appreciated about that day and all the ones since, was Paul's devotion to our son and his complete acceptance of his abilities. He is a loving father to all three boys. While I am the parent who has high expectations for our sons, Paul is the parent who accepts them for who they are. It's a lesson I'm continually working on. He's been a great role model for me. He's been a loving dad.

Happy Father's Day Paul! 

Happy Father's Day to all the dads of special needs children.


  1. Donna this is beautiful. I love the way you honor each others views, expectations and vision for Kurt, while putting your relationships and love for each other first!!!!
    I am so glad we have rekindled our are an amazing person.


  2. I appreciate your thoughts Kori! Thank you!


Kurt at 19