When Little Brother Grows Up

I was at the breakfast counter eating a bowl of Kashi cereal with blueberries before work last week. Kurt was sitting on a barstool next to me watching SpongeBob. He tipped his full pill cup of meds into his mouth and took a big swig of water before turning to me.

"Where's Kelly?" he said.

On a normal Monday this summer, I would be driving to work and Kelly would be making sure his big brother took his anti-seizure medications and ate breakfast before they drove to Hudson for Kurt's day program.

Instead, Kelly left early that morning with two friends for a road trip to Colorado. They were taking a week-long adventure before the three of them went off to separate colleges.

"He left with Calvin and Mark, remember?" I said.

Kurt frowned, "What was Kelly thinking?"

He likes having his brother around. "Come on, Bud," Kelly would say and Kurt would saunter out to the Blazer in the morning, lunch box and water bottle in hand, ready for work. When Kelly picks him up, Kurt introduces him to his friends. He likes to go through McDonald's drive-thru and order burgers. Or stop at Walmart to get a new DVD. I think he must feel like one of the guys, something I can't give him.

Knowing college is a month away, I decided to gently warn Kurt of the future. "Remember Kelly is going to move away and go to school pretty soon? Then he won't be helping you anymore."

Kurt finished his spoonful of cereal, then paused. "I don't want Kelly to go to school far away. Doesn't he know I need him?"

We ate in silence while I thought about Kurt's words. Over the years, I often wondered if the two of them would ever get along. While Kurt was regressing because of his seizures, Kelly, three years younger, was growing and learning. Their rivalries knew no bounds. Kurt, strong and angry, could wrench a toy out of Kelly's hands and knock him down before I could blink. Kelly, no slouch when it came to being strong-willed, never gave in. Ever.

It wasn't until Kelly matured enough to reason with Kurt  that the fights and rivalry finally ended.

When Kelly was 14, he started helping me with Kurt so I could run an errand or when I was going to be late from work and Kurt's aide needed to leave. Kelly found his way with his big brother. "Come on Bud,"  he would say with a steady calmness that Kurt trusted. He could coax him outside to play Frisbee or get him to clean up his movies.

Kurt's words reminded me of how hard it must be for Kurt when his brothers move away from home and leave him behind. It's different for a parent. It's our job to send our sons out in the world, even when we know they'll be missed. But for a sibling to watch his little brother grow up and leave...

Parade On

Last week, I coaxed Kurt to be in the River Falls parade with me. I was co-coordinator for the BRIDGE for Youth with Disabilities float, with duties to welcome any parents and special needs youth and adults who showed up, hand out t-shirts and organize the group to ride the float or walk.

Kurt wasn't too keen on the idea. "How about you go and I'll stay home?"

I smiled. I'm doing this for him, and he's just not that into it.

I continued coaxing each evening. "You'll see your friends. There'll be fire trucks and tractors."

On Friday, when he got home from Community Homestead, he seemed ready, if not exactly eager.

We approached our float and found the driver. "Hi Kurt," the man said. He turned to me, "I'm Tom. I know Kurt well. My students are in the work program with him."

The BRIDGE day program takes Kurt and his peers to volunteer jobs in the community. I knew they work closely with the special education students at Hudson High School and I had heard of Tom, but hadn't met him before.

The two continued to talk and high fived, then Kurt pointed at the front end loader parked behind us, apparently the next unit in line.

"That's what you'll be riding in," Tom said to Kurt.

I knew he was joking. Since his delivery was straight-faced, and because Kurt loves construction equipment, I thought he might take Tom seriously. However, I didn't address it because people started arriving.

A half an hour passed while we greeted the pairs of chaperones and special needs adults/youth. We waited in the shade of the nearby gas station until it was time to take our places. A couple of people in wheel chairs would be pushed by their caregivers and I was to walk alongside the float with another woman to hand out bags containing BRIDGE info. The rest of the crew would ride and throw candy.

I turned to Kurt. "Pick a spot to sit."

His back stiffened and he stood up straighter. "I'm not riding on the float."

"Well, you need to either ride on the float or walk."

"I'm riding on that," Kurt made a large sweep of his arm and pointed at the front loader.

Oh great - just as I had suspected. "That isn't part of our group. You need to get on the float."

Kurt crossed his arms in defiance and stood his ground.

"Look," I said. "You need to get up on that float. You don't get to ride on the front loader. He was making a joke."

Kurt blinked and climbed on. Everyone got settled. We crawled along behind another float and at the corner, we were directed onto Main Street behind a fire truck.

Busy handing out bags, the time seemed to go fast. When I took a moment to look at Kurt, he was smiling and waving. His hand held the front of the trailer. I imagine, he was pretending the front had a push blade and he was driving.

See for yourself in the photo below:

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?"

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.

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.

On the Eve of 21

Kurt's 21st birthday is tomorrow.

Many thoughts are running through my mind:

• "If Kurt were a cat, he'd have eight lives left." That's how his neurologist put it when Kurt survived a drug-induced coma. He has lived 12 years longer than the doctors in the Pediatric ICU expected.
• The smallest steps since then have seemed like miracles.
• I have to remember when Kurt refuses to do something, that in the past, he may not have been capable of the task. Now he is, but the refusal is his strong will showing. That trait has been his saving grace.
• Over the years, I have come to accept that Kurt will never be independent because of his cognitive disability due tragically to the seven years of uncontrolled seizures. Kurt is working to prove me wrong. He wants to make his own decisions and I must learn to give him some space. 
• He is on the cusp of his own version of independence.

Happy Birthday Kurt! Love, Mom

Kurt's Favorite Signs of Spring