Sunday, June 27, 2010

Pig Roast Time

Kurt's first words to me Saturday morning were, "What time do we go to the pig roast?"

He was going to have a long wait since we wouldn't be leaving home until late afternoon. The 11th annual Community Homestead Pig Roast is a fundraiser for the non-profit community living and working with people with special needs.

"A long time after lunch," I said.

The day passed slowly, and a few more questions, "Is it time to go yet?" were asked and answered before we finally left home.

After the 45-minute drive and parking the car in a farm field, Kurt, Paul and I walked to the community center. Kurt no longer hid his head like he did when we first started coming here seven years ago, but greeted every one, even yelling out to people some distance away.

There was an area blocked off on the left, as you can see in this picture. An electric fence was up and there were spray painted markings on the grass. I puzzled over it for a moment, but let it go. Later, I entered a raffle for a big basket of crafts made by the community members and chose the square "21," Kurt's age.

We had our meal of pork, applesauce, beans, potatoes and bread, (all homemade), in the makeshift dining area under the tents, in case of rain. Fortunately, the rain held off. We were lucky there was cloud cover because the temperature was 84 degrees and muggy.

I had invited John and Harriet Gushue. Fortunately, we found each other and we made room at our table. It was their first time. John mentioned he was interested in seeing the cowpie raffle. Puzzled, and hoping I didn't sign up to win a cowpie, I asked for more details.

Community Homestead is an organic dairy. Here are some of the cows out in the pasture:

Here's the cow that chose the winning number "12" in the fenced off area I had seen earlier:

We took a walk to the gardens and orchard to show our friends around. Kurt was more than happy to be tour guide. These are some of the flowers that are used to create bouquets and sold at farmer's markets.

As we walked around to see the raspberry and blueberry bushes, a cat greeted us.

By the time we got back, the folk dancing had begun.

We had some sliced watermelon and watched the dancing before walking to the car.

Kurt said, "When do we come again for the pig roast?"

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.

Saturday, June 12, 2010

A Party

Kurt told me he liked having his family around. Since his younger brother Kelly was graduating last weekend, we had company. My dad was visiting from Louisville, Kentucky and Paul's mom came from LaCrosse. In addition, Keith and his fiance, Jen, were here and my mom too, who lives near us.

There were many highlights to the weekend. One was that after the party, Kurt suggested we play his dice game. In Left, Right and Center, everyone starts with 15 cents. With each turn, the players must pass their nickels depending on the role of the dice. The last person with money wins. Kurt won four out of seven games and finished with a pocketful of change.

Here's a picture of Grandma Ruth, Kelly, Paul and Kurt.

Kurt at 19