When will Keifer be home?

Keith was home last weekend with his fiancé Jen. He’s in his fifth year at UW-Platteville in Southern Wisconsin and will graduate in December with an Electrical Engineering degree. Jen finished school with a degree in Business Administration. The couple got engaged over the summer. I snapped this picture of them in our sunroom.

Keith lived at home this summer, completing an internship in Minneapolis. Kurt liked having him home. He asks me, now that his brother is back at school, “When will Keifer be home? Next week?”

The calendar is not Kurt’s strong point. He knows the seasons, the difference between night and day, that one day follows another, and weekends are “stay home days.”

When Keith will be home is getting harder to explain. He will visit at holidays, but has an apartment with Jen. After graduation, he won’t be moving back into his old room. That time has passed.

That’s what Kurt and I talked about Sunday night.

“Why did Keifer go back to school?” Kurt said.

“He is finishing classes and then he’ll graduate this winter.”

“And move back home?” Kurt said. That always seems to be prominent in his mind.

“No, he has an apartment. He’ll get a job and maybe have to move to another city, but he won’t be moving home.”

“Why won’t he move back home?” Kurt said.

“Because he is grown up.”

What have I stepped in now? I tell Kurt all the time that he is a grownup. Does he wonder why he lives at home? Will he ask to move out?

My heart suddenly felt squeezed by a vice grip, thinking of Kurt not living at home with us. I have been protecting him for 20 years.

On the other hand, this could be the beginning of a new step. With Keith as his role model, Kurt will be exposed to what kids do when they grow up. They move out and have their own lives.

That’s what Paul and I want for Kurt. I will have to take the next step too, in letting go.

Letting go is hard.

Just Another Day at the Farm

I got to Community Homestead early on Friday to take a walk and possibly some pictures. Here’s one of the grapes in the vineyard. All the vines were heavily loaded and I couldn’t believe the fragrance in the air. Each breath was like drinking juice. I could have spent the afternoon breathing.

After soaking in that pleasure, I traipsed down the hill to pick up Kurt at the garden. I found him in the bed of a pickup truck with Kaye, Oscar and Dustin and surrounded by just-harvested soybeans. Two more special needs adults, Mary and Scott, were sitting in chairs behind the truck. All of them were pulling the edamame pods off the plants.

I’m in awe each time I discover Kurt working! This is the young man who, most often, refuses to do his chores at home. And here he is, having fun with his friends, spending three entire days each week working! I talked to the crew for 10 minutes, as my son continued his task. I finally told him to finish the plant he was stripping and then we would go. Otherwise, I think he would still be working!

When I watch him at Community Homestead, I think of the patience they’ve had over the six years Kurt has been volunteering. He is a productive member of their community. He has gained so much in return – friends, self-esteem, and abilities.

Visit Community Homestead

Saturday September 19, 2-6pm

at

Community Homestead Community Center

519 280th St Osceola, WI 54040

Tours, hay rides, crafts and produce for sale, potluck meal-bring a dish to share.

Come meet the community!

Ever-Expanding World

Kurt has always been one to like having his family close. He worries about “Keifer,” the nickname that stuck on his older brother. “When will Keifer be home?” Kurt has asked numerous times this summer. Keith has been home from college doing an engineering internship in Minneapolis. When he goes out at night or is away for the weekend visiting his fiancé, Kurt worries.

Our college student left last weekend for UW-Platteville. Now Kurt tries to understand the nebulous calendar. He gets that each sunrise is a new day, but how many of them before Keifer returns is vague. “Sometime this fall,” I say, knowing that Kurt has a sense of seasons, but it really just stops the question until the first leaves turn color and begin to drop.

Keith will graduate in December, he has an apartment with Jen, and he started cleaning out his room for good, so we’ll have a guest room. How will Kurt react to his brother truly leaving the nest?

His younger brother Kelly is another source of concern for Kurt. Kelly has been his transportation this summer. After being so proud to introduce Kelly to his friends for the last couple of months, soccer practice started a few weeks ago and the two brothers are spending less time together. “Is Kelly at soccer?” Kurt will ask when I pick him up from Community Homestead. He’s disappointed to see me.

Kelly starts his senior year of high school in a few days.

What does Kurt think? Does he imagine where everyone is each day? He has ridden in Paul’s semi and he visited my office once. He has been to the high school and also to Platteville Keith’s first year. Does Kurt keep those visions in his memory?

Paul and I, and Kurt’s brothers have a large world at our convenience. We drive ourselves anywhere we want to go. We have access to the world through the internet, connecting with friends when we want, and shopping is limited only by our funds. Kurt’s world is much smaller. Socializing, shopping or any trips outside the home are up to someone other than Kurt. He has to rely on us.

Kurt’s world has been limited by his seizures and his disabilities. Yet, there is growth. He leaves home five days a week. Some days at Community Homestead, he’s washing the newly picked lettuce or pushing the wheelbarrow full of weeds to the compost. At the day program, he’s playing basketball with his friends at the YMCA and buying groceries to make a snack. He’s gathering eggs from the hens with his friend Nic when he stays with Nic's family. "That's my brother," Kurt tells the people around him on the bleachers when he sees Kelly on the soccer field. He’s buying CDs at garage sales and peanut butter cup blizzards at DQ.

Kurt’s world is expanding. Maybe, just maybe, that will help when his brothers’ worlds go far beyond his grasp.

Ghostbusters!

Kurt wore his hat. When he tilted his chin down, the brim hid his eyes from public view. He tried to suppress a grin and when that failed, covered his mouth with his hand. I still got a glimpse of the sparkle in his eyes.

Paul, Kurt’s brothers and I were seated two rows back from the stage at the Bridge Players performance “A Night at the Movies.” Kurt was in the back row on stage, dressed in a Ghostbusters t-shirt, with the familiar “no ghosts” symbol emblazoned on the front. Other members of the cast included a Dorothy, a cowardly lion, a boy in a white-disco-suit, Danny and Sandy from Grease, and a staffer playing Uncle Fester, to name a few.

Kurt attended rehearsals all summer when he met his friends at Bridge for Youth with Disabilities. He’s been talking about the performance for over a week, asking Keith and Kelly if they would attend, asking when he could wear his Ghostbusters shirt.

The performers signed to “Somewhere Over the Rainbow,” accompanied by Judy Garland played over the stereo system. They waved animal puppets to Dr. Dolittle’s “Talk to the Animals.” They waved scarves to “We Go Together” and discoed to “Stayin’ Alive.”

Everyone participated in each song, but each person was a central player in at least one number. Kurt’s was “Ghostbusters.” Several cast members, including Kurt, waved homemade ghosts on poles. At the end of the song, 3 ghostbusters came out and chased 3 ghosts around the audience. Kurt was one of the chasees. He loved it!

The players finished with a rap song that led them out into the foyer, where they shook hands and accepted congratulations from their families. We were to enter another room for refreshments and I asked Kurt if he was coming too. “No, I have a crowd,” he said, referring to the remaining audience to greet.

When he joined us for bars and lemonade, Kurt brought Jen, aka Dorothy, to meet his family. Kurt added, “I’m having a party!”

That's all I want. For Kurt to have opportunities like every one else. Thank you Bridge!

A Question for You

A thought-provoking question was asked in Table Topics at my Toastmasters club on Thursday. Table Topics is practice in impromptu speaking, a great skill to have at business meetings and in situations when you want to make a good impression. For example, as a writer, I’d like to feel comfortable and come off as intelligent if I were to meet an agent or publisher.

The question asked was: “When life threw you a curve ball, what decisions did you make that you now regret?”

If I had been called upon to answer, this is what I would have said:

One of the biggest curve balls in my life was having a son with epilepsy and special needs. That change has not come easily for me. I grieved the loss of my dreams for my son. And I’ve also felt sorry for myself many times since Kurt developed epilepsy 17 years ago. Sorry that my life didn’t turn out as expected.

When Kurt was having so many seizures back when they started at three-years-old, there wasn’t much time for girls’ weekends. Leaving Kurt plus his brothers and Paul would have induced waves of guilt. So I lost touch with friends.

High school reunions came and went without Paul and I. Sharing our hardships with others didn’t feel right, so I let the connections wither. I like to share good news, not bad, and there was a lot of bad for the first seven years after Kurt’s diagnosis.

One day earlier in the year, an invitation to our 30^th high school reunion arrived. I tossed the event back and forth in my mind, discussed it with Paul, and we decided to send our RSVP.

A couple of weeks before the dinner, I got a call from Debbie, a dear friend. She invited me to her cabin and was also inviting another dear friend, Kori, who I had not seen for years. Again, I had to weigh the guilt, who would take care of Kurt while I was gone? We had made arrangements for the weekend, but now I had an extra 24 hours to throw in. We don’t leave Kurt at home alone for safety reasons. He also needs medicine three times a day, which someone has to get ready and make sure he takes. I would be leaving this chore to Kurt’s 17-year-old brother. Talk about guilt!

However, I said “Yes!”

I spent a precious 24 hours with my two friends. We talked, laughed, cried, and shared our stories. I found out that every one has been thrown curve balls. I am not alone.

A week later, I am still feeling that warm glow of friendship. I didn’t know how much I needed the connection with friends who really know me until it came back into my life.

So the decision I regret is that I didn’t stay in touch with dear friends.

What decisions have you made that you now regret?

No Frustration at the Pig Roast

A couple of Saturdays ago, Kurt, his dad, grandma and I went to the annual pig roast fundraiser at Community Homestead, (www.communityhomestead.org) a non-profit rural community living and working with people with special needs. We’ve been hitting this event for six years, since Kurt was 14.

Our first taste of the farm was back then, as Kurt and I spent one afternoon a week volunteering in the work groups. I learned how to make drip candles and Kurt helped in the chicken barn or with making stained glass art.

Attending the pig roast in previous years was taxing. We’d coax Kurt out of the van, promising the petting zoo. We’d walk around and seek out some of the people we knew, but Kurt would hide his face. At the buffet line, (pork, homemade sauerkraut, new potatoes, a lettuce salad picked fresh from their garden, other sides, and a table of home baked desserts) Kurt would hold his plate just enough not to drop it and complain about anything we put on his plate. Once back at the van after we ate, Kurt wouldn’t get in. Yikes! It was a frustrating, tiring day (and we were only there for a couple of hours).

Oh, the change this year!

The pig roast was on his mind all week. “Can I bring the movie camera?” Kurt said. Then he’d go on about his friend Hillary or something Mark said.

On that afternoon, instead of being the shy, unsocial teen, Kurt said “Hi” to all his friends and even introduced us to people he didn’t know! We watched him eat a full plate of food. Then he gave us a tour through the flower and vegetable gardens, and the orchards.

Not only was it great for us to see Kurt maturing, the event raised $3000. The money will be used to install the kitchen in the new community center.