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.

10th Annual
Pig Roast

and
Folk Dance
Fundraiser
at
Community Homestead

Community Homestead is a non-profit organization living and working with people with special needs.

Saturday, June 27
3-9pm
501 280th St.
Osceola, WI

Tickets: $12 for adults, $6 Children 6-12 years, FREE for 5 years and under.

Organic food - Live music - Raffle
Horse and Carriage Rides - Vegetarian alternative, buffet served between 5-7pm.
Children's activities.

Kurt works in the garden all summer at Community Homestead. He has made many friends there and enjoys his job.

The Next Step

I dropped the paperwork off last Wednesday so Kurt could begin attending the day services program at BRIDGE for Youth with Disabilities. The packet of paperwork was about an inch thick. Most of the questionnaire had to do with Kurt’s abilities, likes and dislikes. For example, I put pizza at the top of his favorite foods list. Some of my answers would be used to develop goals for Kurt, so he could make progress on social skills or telling time, for example.

We let Laurie go last week. She had been Kurt’s aide for four years, since I began working. Kurt was home with her three days a week and spent his other two days working at Community Homestead (CH). Laurie used to go to CH with him, but recently decided not to do that anymore. Her decision was the catalyst for change. Now was the time to help Kurt be less dependent on one person and more active in the community.

For the summer, Kurt’s younger brother, Kelly, will be helping Kurt and driving him to his activities. He’ll be working at Community Homestead three days a week and going twice a week to Bridge. This will give him more time with friends and allow him to be more active.

In six months or so, Kurt will go to CH four days a week, and then five some time next year. Eventually, when Kurt is ready, and CH has an opening, my son will leave home.

Water Balloons Among Friends

With red squirt gun in hand, Kurt sprayed water down the pine tree's trunk. He would sometimes dig out old toys, as he did now, while we camped. He easily entertained himself with collecting kindling, tending a fire once his dad got it going, and playing with small construction vehicles. Although he is twenty, developmentally his skills ranged from five to teen.

That made it hard for Kurt to socialize. We found some activities where he could join in with peers: challenger baseball, therapeutic horseback riding and his twice weekly work at Community Homestead.

While sixteen-year-old Kelly usually brought a friend or two on camping trips (this time, two), Kurt didn't have someone to bring.

Meanwhile, I found a bag of water balloons and set them on the table outside. Maybe the boys will use them.

Kelly and his guests sauntered across the grass to our campsite after their swim. They threw their towels over the clothesline, and plopped down in chairs. Thomas saw the balloons.

“Oh!” He grabbed them and ran to the water faucet.

Pretty soon, all three teens were having a water balloon fight, with round wet spots appearing on their t-shirts. Kurt joined in with his squirt gun, laughing and running along with them.

Kelly and his friends decided to fill several balloons and sneak up on some girls they knew. They invited Kurt. Off they went.

I smiled, grateful they had included Kurt.

When they came back, Kelly said, “Kurt giggled and covered his mouth the whole time we were sneaking up.” He smiled. “And then he squirted me!”

Kurt laughed.

For me, this was the highlight of the weekend.

Author Appearance - Yea!

Come celebrate the accomplishments of our extraordinary kids. Hear Kurt's inspiring story written by Bridge parent Donna Karis, one of the heartwarming essays by parents of special needs children in A Cup of Comfort for Parents of Children with Special Needs, (May 2009; Adams Media).

Saturday, June 13
9-10am
BRIDGE For Youth with Disabilities
at First Presbyterian Church
1901 Vine Street
Hudson, WI

The national Cup of Comfort series is celebrating the differences in our extraordinary kids. Come share the big and small accomplishments of your kids. Learn about the benefits of sharing your stories. This will be Donna's first public reading. The Cup of Comfort book will be available for purchase, and the author will sign copies for attendees. A portion of the proceeds will be donated to Bridge.

Camping

Nearly 20 years ago, Paul and I took three-year-old Keith and one-month-old Kurt camping. In a tent!

“You don't have to do anything,” Paul said. “Just take care of the baby.”

He convinced me. Keith was devoted to his dad and “helped” him set up camp.

We crawled into our sleeping bags that first night, with Kurt wrapped up in his portable bassinet. The temperature dropped to 45 degrees. I woke, it seemed like every hour, worried that Kurt would be freezing. I moved his bassinet between Paul and I to give him more body heat. I touched his cheek and watched him breathing. He was warm and comfortable.

Early morning, sounds of Kurt cooing woke me. Dawn brought sunshine through the trees nearby and shadows of leaves danced on the tent canvass. Kurt was mesmerized by the visual display. His eyes were wide, and his pudgy arms and legs wiggled with excitement, all the while cooing his pleasure. I laid beside him, silent so I wouldn't disturb his reverie. An hour went by before Kurt decided he was hungry.

Paul kept his word. He took care of everything, with Keith at his side. I sat in a chair and took care of Kurt.

Spring weather has called Kurt to camping every year since.