All I Want for Christmas

I hate listening to ads on the radio, so whenever I'm driving and one comes on, I switch to one of three Twin Cities stations. That happened last week Tuesday, when an ad came on 97.1 and I tuned into 102.9. To my surprise, they were playing Christmas music. A little early, I thought as we drove to Community Homestead, but Kurt was enthralled. This is Kurt's favority holiday, and combine that with his love of music, and he must know every carol ever recorded.

"All I Want for Christmas is You" by Mariah Carey came on the radio while we cruised along Highway 35, just north of Somerset.

"She doesn't want any presents," Kurt said.

Deep in my own thoughts, I looked over at Kurt, "What?"

He nodded his head towards the radio and repeated, "She doesn't want any presents for Christmas."

Turning back to watch the road, I listened to the lyrics, which I hadn't paid much attention to until Kurt brought me back to the present.

Mariah was singing:
"I don't want a lot for Christmas
There's just one thing I need
I don't care about the presents
Underneath the Christmas tree
I don't need to hang my stocking
There upon the fireplace
Santa Claus won't make me happy
With a toy on Christmas day
I just want you for my own
More than you could ever know
Make my wish come true
All I want for Christmas is you."

Kurt completely missed the romantic nuance, but I like to follow his line of reasoning. He can't believe someone wouldn't want presents.

On Wednesday, the Mariah Carey song came on again. We were a little farther up the road, having left earlier than the day before.

"If this song was in my brain," Kurt said. "I'd still be hoping for presents under the tree."

Waffling

I have waffled back and forth on getting the H1N1 vaccine for Kurt. When I read that the vaccine has ingredients that have not been tested, I thought no thanks. When I read that the government relieved the drug companies from being liable for harm, I thought no thanks.

When I hear warnings on the news that the flu is worse, perhaps fatal, for someone with underlying medical conditions, that's when I freak, especially when the news story used epilepsy as an example of an underlying condition.

Kurt is medically fragile. He has, in the past, had multiple seizures from illness. Pneumonia a few years ago caused seizures and dehydration, and a hospitalization. And the worst case was ten years ago when a nasty virus caused status epilepticus, a life-threatening situation when the brain is in a state of persistent seizure.

So I called Kurt's neurologist and asked for his advice. He said get the vaccine. Of course, when I called our clinic, the vaccine wasn't available to the general public in our area.

Then I went back to, okay, maybe Kurt won't get it. Or, since he received the seasonal flu vaccine, maybe he'll have a mild case. Kurt is healthier now. He had a cold at Halloween and got over it in 4 days, without any seizures.

I follow the Dream Mom blog, dreammom.blogspot.com, about her Dream Son, a medically fragile teen. He has intractable seizures and other conditions. She explained that her son is severely disabled. I read that her son has the H1N1 flu and is in PICU, with a ventilator. Having been in that situation with Kurt ten years ago, my heart goes out to them. It is traumatic, and life or death.

These are the cases that scare me. I hope we can get the vaccine soon.

Trick or Treat

Kurt missed the Bridge Halloween Party on Saturday because he had a head cold. He was very disappointed, but we had Trick or Treating.

I think all kids have trouble when they are getting too old to Trick or Treat. I remember when Kelly wanted to go “one more year” every year. We took Kelly when he was 11 and Kurt at 14 for the last time. I walked around the neighborhood with the boys. When we got back to the house and the boys dumped their candy out on the counter, Kurt had about half as much as his brother, even though they had hit the same number of houses.

I immediately thought of Charlie Brown and the rocks.

Since Kurt had trouble getting “Trick or Treat” out in time, he most often remained silent at the door. So maybe the adults thought he was rude, or because of his height, they thought he was too old, or a combination of both. I’ll never know, but that’s the year I decided to make the transition for both of them.

Kelly ended up going one more year with his friends.

I had a plan for Kurt. He would hand out the candy to the kids when they came to our door. Oh, what a process that became. He wanted to do it all by himself, but was very slow. He insisted on locking the door after each group. So the whole routine consisted of unlocking the door, opening it and the screen door. Sometimes he talked to each one and asked about their costumes. Then he would pick out which candy he wanted to give out of our orange candy dish.

Our dish is actually an orange bucket. When we moved to River Falls, the Welcome Wagon lady came around and gave us gifts, one of which was this bucket. It wasn’t very big or sturdy enough to carry around with water to mop the floor, for example. So for some reason unknown to me now, we threw in a package of snack size candy bars and put it in the cupboard. And ever since, if you want to find some candy, just look in the orange bucket.

Starting with last year, Kurt really owned candy duty for the first time. Since he had planned to go as a Coca-Cola driver (Paul’s former job) to the Halloween party, he donned one of his dad’s uniforms and sat in the darkened living room, watching out the picture window at the shadowy figures walking the street. As soon as they started up our drive, he shot into action, opening the door and dropping treats into their bags.

His Halloween transition from kid took some time, but it’s really worth it to see him enjoying his adult role.

What Does Kurt Want to be for Halloween?

Halloween is a week away and Kurt is eagerly anticipating the upcoming party hosted by BRIDGE for Youth with Disabilities. Most of the young adults and many of the parents will wear costumes.

“What do you want to dress up as Kurt?” his grandma asked.

Kurt silently looked ahead, watching traffic as she drove him to work one morning.

“A police officer? Fireman? Vampire?” she said.

No answer.

“A construction worker? Super hero? Pirate?”

More silence. Finally, Kurt had his answer.

“A golf cart,” he said.

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!