Kintropy In Action

One of the features of the campsite that Gabriel loved was the pile of sand that came up its driveway. He immediately took my shovel and started picking up big mounds of sand. The wind would whip across the site and lift curtains of sand off the shovel and shower wherever he walked. I immediately decided to channel his enthusiasm. I didn't want the tent covered in sand. So I found a section of ground near the fire pit and told him to make a pile there. I figured if we needed to put out the fire that would make it easier. He went to work while I looked at the tent that Nannie had helped me lay out.

It was a 6 person Coleman tent. As I circled it I counted the stakes it required. Around it's edge there were 10 loops for stakes. The first one was easy to drive in. I hammered the two stakes on the shorter edge of either side of the tent. I then went to hammer in the side closer to the rocks. The campsite look like a dry riverbed surrounded by rounded stream rocks.

 The rocks were mini boulders about a foot and half in length and embedded in the soil. There was a problem this side was too close to those rocks. I had to pull the stakes back up. Meanwhile Gabriel had become bored with the shoveling.

"Are you done yet Mommy? Can you play with me?"

"I'm not done yet Gabriel. You can help me hammer in stakes though. Do you want to help?"

He frowned shook his head no. "No!"

"Ok, I need to get the tent up so we have a place to sleep tonight."

He walked to a large boulder covered in moss and covered by a young oak and sat down. He started talking one of his internal dialogs.

I pulled up three of the four stakes and maneuvered the rest of the tent an inch or two away from the rocks. I started pounding in the stakes again. Not all were easy. I was lucky Dad and Pat had bought long wide stakes that I used to loosen up the ground then retry the original stakes. I think it took me an hour to get it up and a few bent stakes. Gabriel helped with a one stake when he got bored and helped me put up the post.

We then broke into the Hershey bar box and had a bar each. I then played with Gabriel after I called Nannie and reminded her to pick up a dustpan and brush. When Dad and I inspected the tent on the weekend before the wind had blew in pine needles.

It was around 6:00 PM when Dad and Pat made it back to the camp. I was unpacking the camp stove. We all hugged and Gabriel lavished Lilly, the dog with attention. They inspected my tent and pronounced I'd done a good job. We moved the picnic table that was teetering. We moved stuff out of the tent I had moved the non-refrigerator supplies and clothes into the tent. I got the dust out. Dad and Pat went back in and rebroomed and started setting up the air mattresses.

We ate hamburgers at 7:00pm then started cleaning up. Then we started prepping for the fire.

---Mom

Posted by parents at 09:21 PM | Permalink | Comments (0) | TrackBacks (0)

June 22, 2007 at precisely 11:00 am my stepmother came to pick Gabriel and me up. My mother in-law was there to greet her. We all exchanged hugs. Lily, my stepmother and Dad’s dog jumped back and forth trying to figure out whom to lick first. We had a lively conversation then got down to business. She was the Ninja Camper and had a checklist to go over.

One hour later, we had the car packed with a smaller list of things we still needed to buy for the trip. After a break for lunch at Macaroni Grill and a stint at REI we hit the road around 2:15 I know this because I was trying to set a watch I had just bought for way too much. Given what I do to watches. I was baffling the poor sales women in the store with my questions. "Will they withstand being hit against a rock? Are they waterproof?" She would pause and give me a startled look. "What are you looking to do with it?" I was trying to justify the price in my mind for a piece of plastic that just tells time, and the date. Oh well I digress.

Gabriel had succeeded in talking Nanni into buying him a Frisbee that lights up. He was insisting on holding it in the car but was getting frustrated that he couldn’t light it up by himself.

We started the drive and by the time we hit Portland proper it was rush hour. Only twenty minutes into the drive Gabriel started asking if we were there yet.

I thought he was doing the bit from Shrek 2 that Donkey does. No, he was serious. I told him it would be over an hour. In the middle of the crazy freeway interchanges in Portland Gabriel says fervently "I need to go potty!"

Nanni looked at me and back at the road. "Can we wait till we are out of the city. It seems some of these exits don’t have immediate re-entry. You end up spending an hour looking to get back on."

I agreed and looked at the signs and noticed we were 5 miles from the last interchange. "Gabriel can you hold it for 10 minutes. We are just looking for an exit."

"Yes, I can"

We lucked out there was a K-Mart. We went there. Since the trip to the bathroom was taking a while, I checked my messages on my cellphone to clear them out. One was from my stepmother the night before. She had called to remind me to plug in the pump for the air-matresses. I had done that but as I sat there listening to the message I realized it was still plugged in at home. She was back at the car with the dog. So I called her and told her what was going on. "There is good news though. We are at a K-mart Gabriel and I will just go to the camping section and look for a pump there."

So that is what I did and I found something better a battery-operated pump. So I checked the batteries needed and headed to the electric department. We picked up two sets of batteries. This all sounds easier then it is. Gabriel was in slow mode. He drags his feet across the floor.

We make it to the car and off we go.

The drive is beautiful.

We reach the site at 4:15 PM. We unload the car and Nanni goes off to pick up my Dad. Gabriel and I work on setting up camp.

--Mom

Posted by parents at 09:44 PM | Permalink | Comments (0) | TrackBacks (0)

Scattered rain and cloudy sunbreaks punctuated my drive to the campsite yesterday:  a melancholy good-bye to the mostly grey days of spring.  I love the rain.  Having been raised in perpetually sunny Southern California, I flinch a bit from our late Oregon summers:  two and a half months of warm to hot weather that doesn't suit me.

So driving to pick up our Campers, I enjoyed the rain (though not my fellow drivers sudden unfamiliarity with how to drive in it), and packed my CD case appropriately.  I had a good twelve hours of music for a two hour drive, but David Sylvian seemed to capture the promise of sunlight and good-bye to rain best:  a good mix of both moods.  This brought to mind the Top 5 lists from Nick Hornby's High Fidelity (also apparently now a musical), so here are my current (changes w/ my mood) Top 5 Melancholy Drive songs:

1. David Sylvian, "Orpheus"
2. Sundays, "Here's Where The Story Ends"
3. Tears For Fears, "Everybody Wants to Rule the World"
4. Arcadia, "Missing"
5. Nancy Griffith, "The Flyer"

Leave comments if you want to suggest your Top 5 Melancholy Driving Songs....

-- Dad

Posted by Dad at 08:27 PM | Permalink | Comments (0) | TrackBacks (0)

Janette and Gabriel headed off to camp Friday afternoon.  I had lunch with them and with Janette's stepmom, bid them all goodbye, then embraced my semi-freedom.  Hannah and I would hang out together Friday and Saturday mornings/early afternoons, but the nights were mine thanks to some extra nursing coverage.  And I had plans.  Big plans.

I might start writing that book outline percolating in my head.  I might go to Fry's and purchase a new digital camera we couldn't afford.  I might go to a dance club (granted, the last time I went to a club was in the mid 90s, but maybe I could find a retro night).  I might.... well, the possibilities were endless that Friday afternoon.  Two partial afternoons and nights lay ahead of me.  What would I do?  Here's just a partial list:

• Take a nap.  With a fairly quiet house, I was quickly lulled to the luxury of an afternoon nap.  Don't get those at work, you know.
• Go to Powell's Bookstore.  Twice.  Just 'cause I could.
• Restring the guitar my dad gave me.  So far, I have tuned it twice and learned to play an A, D, and E chord.  I played the chords repeatedly for Hannah.  She was curious, but not impressed yet.
• Max with Hannah to the Saturday Hillsboro market.  We tooled around a bit, grabbed a Starbucks (Stratford House is better, but has pretty difficult wheelchair access IMO)
• Watch a Steve Wright (comedian) DVD with a friend
  
• Go out to dinner with the family
• Try out a new restaurant

So, yeah, the speed at life in my late 30s is a bit different than when I was younger (and, to be fair, the speed of life then was pretty slow, too:  dance clubs & late-night Carrows/Denny's fit because I didn't sleep much.  Still wasn't exactly the life of the party).

Happy everyone's home, though.  And the casual agenda above was actually pretty refreshing.  For a Monday, today wasn't too bad with a little rest and fresh perspective. 

-- Dad

Posted by Dad at 07:15 PM | Permalink | Comments (0) | TrackBacks (0)

Whew!  

I am an official apprentice campfire starter now.

I will elaborate on the trip this week. After unloading the car and getting cleaned up, all I can think about is sleeping in my own bed. But here is a picture to hold everyone over till I can catch up on writing.

--Mom

Posted by parents at 09:42 PM | Permalink | Comments (1) | TrackBacks (0)

In December, Gabriel asked me one night as I was putting him to bed "Mommy, when can we go camping and fishing?"

I paused, "You want to go camping and fishing?"

"Yes."

"Hmmm" Time for a little background. I grew up in an outdoorsy recreational family. Every weekend was a new adventure of water skiing, snow skiing, roller skating, sledding, camping and outdoor fun. My parents take life by the horns and enjoy every minute they possible can. They had me a bookish, board game nerd who would of rather read a book or go to the theater then any of those things.

I do miss some of those things these days and realize my children will be opposite of me. I need to get in top shape to take them to do those sporty things. One of our family’s focuses is realizing things each other would like to do and try to accomplish them.

So when Gabriel asked me I went through an internal checklist. I was a Girl Scout growing up and there is some wilderness training I have received but one particular area I lack confidence. That is the ability to start a fire. I had the physics and chemistry explained to me dozens of times but I have never been successful. My next thought was of whom do I know who could help with these skills. My thoughts immediately went to my Dad, the retired Marine and my StepMother the Girl Scout leader.

"I’ll tell you what Gabriel, tomorrow I will call Pop-Pop and Nonie and see if we can plan a trip together."

"Can you call them now? Can we go tomorrow?"

My Dad and his wife live in Florida and we live in Oregon. It was nine o-clock our time so it was midnight their time. "No, it is to late Gabriel I will call them tomorrow."

The rest of that night was of him jumping out of his bed and asking me questions about camping, fishing and him elaborating on what he was looking for in the trip. He wanted to sleep in a tent. He wanted to catch and eat the fish. He wanted to sit around a campfire.

So the next day I called my Dad. He liked the idea. I delegated the trip to him and his wife for timeline since they were the ones who would have to fly.

Tomorrow we are taking that trip.

 My goal is to learn how to start a campfire.... I'm already good at putting at fires

--Mom

Posted by parents at 09:32 PM | Permalink | Comments (0) | TrackBacks (0)

"“Disability is not a ‘brave struggle’,” says Marcus, “or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”"

This is just a quote from the first article I pulled up in the current Disability Blog Carnival.  I love this quote and the profiles that Marcy Sheiner shares with us in her blog entry "Disabled Performing Pioneers."  In both Gabriel and Hannah's lives, I'm always looking for ways to reduce the community pity factor and increase the personal empowerment.  I'll certainly hold on to this quote in that respect.

Check out the other entries, too.  This issue's subject is "Borders."  I have a good couple of days of reading ahead of me.

-- Dad 

Posted by Dad at 09:08 PM | Permalink | Comments (0) | TrackBacks (0)

The negotiations started after dinner.

"We need to pick up Hannah's [Medicine A]," Janette said.  "I'm okay doing it."

"I wouldn't mind picking up prescriptions," I offered.  "Plus I need to add my [Medicine B] and Gabriel's [Medicine C]."

"Okay, but I wouldn't mind getting out either." 

Eyes narrowed and glances were exchanged.  Both of us were staking out impossible positions: a night free of child care responsibilities. 

I placed the Walgreens call, adding to the pick up, and Janette cruised down to the floor to visit with Hannah.  Earlier, I had staked my position:  I was worn out and didn't want to be responsible for much tonight (e.g. wanted to creep away to another room and watch the news).  After work and a walk home, I was tired, but avoiding any fatherly duties tonight was being yanked off the table.

"Okay," I acquised.  "You can go do the pick up."

"Thanks," Janette replied.  "I also need to get a couple things while I'm out, [me:  ] but I'll take Gabriel with me [me:  ]."

So Janette and Gabriel headed out for a couple of hours.  Granted, I had lost the negotiations, but Janette's sweetner at the end made things work out pretty well.  Besides, Hannah and I had a great time together over the weekend, and I think we were both looking for a repeat.  We sang together, watched Jeopardy and Wheel of Fortune (Hannah's favorites), laughed at funny voices, and stretched on the floor together.

Around eight, Hannah and I headed back to her bedroom for some Laurie Berkner downtime (her:  the video; me:  some reading).  A little after nine, Janette and Gabriel returned.  

"Gabriel, I said it's time to get ready for bed!" 

"I am!  I am!"

Janette popped into Hannah's room and deposited a fresh, warm Milky Way latte from Dutch Brothers (our unspoken repayment when she gets the out-of-house permission slip).  Hannah's nurse joined us, and I gave her the report for the night as Hannah hugged and kissed her. 

All in all, I thought, a pretty good night even if my original position wasn't won.  Hmmm... it is Tuesday...  Maybe I could try winning a different negotiation:

"Janette," I asked sweetly, "we're you going to take out trash tonight?"

-- Dad 

Posted by Dad at 08:24 PM | Permalink | Comments (0) | TrackBacks (0)

We had an exciting weekend.

It started Friday, Auntie O, Zadie, the kids and I went to the Portland Zoo. It was a day of mist with a few sun-breaks and a nice sixty something degrees. I dressed the kids up in layers and put tiger ears on Gabriel, slugged rain-slickers on Hannah’s chair and off we went. We all got on the Max and rode to the zoo.

When we got there we had to buy umbrellas, very UN-native of Portland of us but the umbrellas were adorable. We bought Gabriel a tiger one, Zadie a ducky one and Mommy a swirley black and white patterned one. Auntie laughed at all our choices and gushed over Gabriel’s cute-ness.

The zoo had a new improvement I loved. The mountain goat exhibit now leads into the Northwest exhibit and down through to the zoo. The path is a great modern one with hands on activities for kids in between exhibits. It use to be that the mountain goats were a little alcove of an exhibit then a person backtracked to the main thorough-fair that lead down through the sealions to the zoo.

The highlights were Hannah’s fascination with the fish and the running children. Gabriel actually noticed some of the exhibits he usually is all about going up and down stairs and pushing buttons for automatic doors. We saw a rebellious falcon from the wild bird show. The bears were sleeping the whole time. The sealions were spectacular and kept both kids riveted.

Saturday, my dad came over to help us shop for stuff for the camping trip Gabriel and I are taking with him next weekend. Meanwhile Robert and Hannah had gone off on their trip to the Saturday market.

We did a slight detour while Dad helped me tidy up the front rooms and did his laundry. (He’s on a business trip and staying in a hotel. It’s kind of the college kid coming home on the weekend thingey in reverse) Murphy’s friends the Gremlins decided to make themselves known. When we were ready to go to the store we realized the back passenger tire was flat. I pulled out an air compressor slash backup battery, to blow up the tire, the battery was drained. So I plugged it in. The pressure needle wasn’t moving. So we pulled it back off and I ran it against my hand. It was moving air the meter just wasn’t registering. We put it back on the tire. After a few minutes we were not reassured so Dad and I hauled out the spare tire to the rent-a-car. We pulled out the jack but could not get it open. It was some type of metal puzzle with sharp edges. Being a rent-a-car it had no manual in the glove-copartment to reveal the secrets of the jack. So we put it back and dad reattached the pump while I went looking for a tire place in the yellow pages. I found a place near restaurants and a place we could get camping gear. I called them. The woman who answered was sunny and easygoing. "Bring it in!"

I love Les Schwab

We accomplished our goals. Yeah!

Sunday, Father’s Day we went to the Portland Beaver VS Salt Lake Bees baseball game. Gremlins visited us again. Before we got to the Max I noticed Hannah’s Kid Kart was missing that part again, which is called a Tee Nut – Brad Hole. It is a pivotal piece in Hannah’s wheelchair. I called the extended family and told them we would meet them at the ballpark. We had to do a detour to Lowe’s. The kids and Robert stayed in the car while I ran in and bought several of the pieces. I’m going to keep a couple of them in her supply bag from now on.

I fixed the cart.

Then we were off. We met the family at the park. We were still early enough for the free father baseball hats. The doors hadn’t opened yet. We loaded up on snacks and found our seats. We sat all together with Hannah in the wheelchair access area. I usually dislike sporting events but I actually had fun. There were enough adults to take turns walking and amusing the kids. And the game had a great deal of action. Bases were stolen, there were double plays while pitcher's arms got worn out.

At one point Robert and I were making up dialogs about what was going on when the catcher was talking to the pitcher. I think it’s left over from being in a couple of surgeries and knowing that people don’t always talk about work. We figured the Bee’s were talking about going to enjoy Portland’s nightlife after the game since they were coming from Mormon Country.

The ballpark was full of families and smiling faces.

We went to leave early before the Max got full. My son of course had other plans. I just asked him if he needed to use the bathroom he said "yes". It took him awhile. I finally threatened that we would get locked in the park if we didn’t get moving. That didn’t sway him. "That’s ok Mom, they have plenty of food here."

"The food places close Gabriel they won’t be open" Suddenly there was a flush.

We got to the Max platform right when the train we wanted arrived. I ran for the ramp button and pushed it. This started the rap moving, giving everyone time to make it to the train. We were all tired but our day was not done yet.

Bubbie had arranged a barbecue at the Hotel Robert’s extended family is staying at. So we headed off to our separate cars and told the family we would be there, we just need to do a quick stop at home to pick up a few things.

When we get to the hotel the clerk seems unaware of the barbecue and where it is going to be. So we headed to their hotel room. While logistics were being discussed, I laid Hannah on the floor. That is all she wants after several hours of sitting up. I started a feed by hand with a syringe.

Everything was figured out and we moved to the clubhouse for the barbecue. They went to start up the grill. Guess who has paid another visit? Those silly little friends of Murphy, the gremlins have absconded with the propane. The grill is out of propane. Even though Robert’s parents checked about its use on Wednesday nobody checked if there was any fuel for the grill. Zadie and Uncle K went to get a refill. Hannah was exhausted and I was not so fresh either. Robert and I decided it was best if one of us took her home. I took Hannah home. Hannah and I finished the night with giving her a bath. I coated her in lotions and did her stoma care. While Hannah watched Laurie Berkner, I finished with a game of chocolatier, my new little addiction.

Even though Murphy tried. We had a great weekend.

I’m ready for bed.

---Mom

Posted by parents at 10:54 PM | Permalink | Comments (0) | TrackBacks (0)

Next weekend, Janette and Gabriel are going camping with family.  Gabriel has been begging to go for months, but Janette and I felt ill equipped to do the whole camping thing on our own.  Once, after I left Amazon.com, Janette and I stayed in a cabin in Index, WA for a week.  We couldn't even start a fire in the fireplace.  With pre-cut wood.  Trust me, help is a good thing.  She enlisted her dad for this expedition, and he is a retired Marine.  I think they'll be in very good hands.

This is a Mom and Gabriel thing, though.  I asked if there would be a cabin for Hannah and me to stay at, preferrably at a resort with a guesthouse, activities, maybe a casino:  you know, my version of camping.  Apparently, no, not this time out.  They really are camping, so Hannah and I will be roughing it together at home.

So on Saturday, while Mom, Gabriel, and her dad went foraging for camping gear, Hannah and I joined my parents and sister on a Saturday Market adventure.   We met at the Orenco Station Max, and headed in.  This was our first trip to the Market this season.  Due to construction, one row has been knocked out, but it was otherwise pretty much the same as last year, and that's not a put down.  Saturday Market is hands-down one of the best craft marketplaces I have visited.

As we arrived, I made a bee-line to the Cloud Cup espresso stand in the food court area.  My dad took Hannah down to the stage to listen to the music (her favorite activity).  We met back up and cruised the market for a few hours.  Highlights and lowlights:

• Bought a wonderful triptych photograph of a monastary in Florida and chatted with the photographer for a bit.  Great work throughout her booth.  Hard to choose just one piece.
• Moving between sides of the market, some woman tickled Hannah's feet (Hannah was in her Kid Kart/wheelchair) as she walked past us.  I couldn't quite get something out of my mouth before she moved on.  Kind of presumptious to be touching people's kids in public, isn't it?  Just didn't make it out.  I obsessed instead over the cup she held in one hand.  It had bright yellow liquid in it.  What the heck was that, and did I really want to know?
• Hannah didn't nap; she drank everything in about the market instead.  My sister and I sang for her amusement back on the Max, and Hannah seemed to have a great time altogether.  Ner a tantrum to be found!
• A woman, exiting the Max on our way back, said, "You are doing a wonderful job with her."  I replied, "Uh, thanks?  She's been very well behaved."  Would others typically give you kudos for displaying your parenting skills?  Or were we having another artificially-inflated Super Parent Moment because our family experiences disabilities?  Well, we were singing rather loudly.  Maybe this woman really liked my new version of "Paddycake" (set to the "Lollipop" tune).

In the end, Hannah and I arrived home, and she relaxed, playing on the floor for a while, then she fell asleep for a nice long nap.  Janette and Gabriel remained out for a bit, so Dad got some beautifully quiet downtime to read the newspaper & try out his new coffeemaker.  Ahhhh...

-- Dad 

Posted by Dad at 06:14 AM | Permalink | Comments (0) | TrackBacks (0)

Just about every night, I ask Gabriel the same question.  "Gabriel, what's your bedtime plan?"

For me, this is an opportunity to signal that bedtime is fast approaching and to give Gabriel some say in any pre-bedtime activities.  For Gabriel, it's negotiation time.

"Maybe, some game cabinet time?"

"Okay.  You can have fifteen minutes.  Then it's time to get ready for bed."

I set our Lego-themed egg timer to fifteen minutes, and Gabriel, appropriately, podraced through Lego Star Wars 1.  When the egg timer clanged, Gabriel negotiated an extra minute while it ticked down to silence.

"It's time," I reminded him.

Gabriel dutifully worked through his bedtime routine:  bathroom, medicine (with my help), teeth brushing, and pj switch (tonight:  Mr. Incredible theme).  Next door, Janette worked with Hannah on her bedtime routine concurrently.  If the stars were all aligned and both kids went to bed on time and without a big fuss, Janette and I would both get some down time:  wow, maybe even together!  In the same room!

With that tantalizing idea in mind, Gabriel and I read a story together (okay, a Star Wars comic book - see previous entry for Geek Credentials).  Then Gabriel climbed up into his bed, and I wished him a good night.

I moved on to the office/computer room to stroll some of the blogs I like to read and to think about what I would write tonight, killing some time to see if bedtime would "stick."

By the time Gabriel came to check on me, as is his habit, I was stalling, playing Texas Hold 'Em.

"Dad, are you working?" he asked.

"No, not really.  I should though." I shut down the game and opened my web browser back up.  "Go back to bed, please."

"But," he protested, "can I watch what you're doing on the computer?"

"It's going to be boring," I promised.

"Well, maybe we could go to the store then and get some stuff?"

"I don't think we need anything."

"Well, I think we're out of Spiderman crackers," he suggested.

Suffice to say, I am an easy mark for going to the store:  any store, really.  I'm not so great at sitting still, and if I can delay writing, it is in my nature to do so.  Shortly after, Gabriel and I were collecting orders (Mom essentials:  cookies & chocolate) and driving to Safeway.  Not the closest Safeway, mind you:  the one across town, the one across from the 24-hour Starbucks.

Gabriel behaved well in the store, helping me pick apples he thought looked tasty.  We grabbed mostly healthy snacks, actually:  low-fat and such.  When we paid & loaded into the car, Gabriel said, "Oh, my tummy's hun-gry."

I smiled.  "Okay, you have an idea?"

"Sure.  How 'bout, um, we go get you a coffee and me a cookie?"

"Plan that for long?" I asked.

"I was thinking about it all the time when we were in the groc'ry store, but I waited 'til we got in the car.  Was that a good idea?"

"Yes, very effective," I quipped.

So Gabriel and I stood in line at the rather busy 24-hour Starbucks at 10:30pm.  These trips together, late night or otherwise, have always been a favorite of mine, so I indulged both of us.  Gabriel got milk and a snack; I got my grande, tripple, non-fat latte (must be said in that order, by the way, for the baristas to accept it).  As a dozen-plus, bible study group met in the middle, Mr. Incredible and I enjoyed our snack, talked a bit, and enjoyed the ambience silently on our won.

As soon as we got home, I had him brush his teeth again.  He went to bed immediately afterwards, and fell asleep pretty much as soon as his head hit the pillow.  Hannah, by the way, is currently asleep as well (and did give Janette some time, too, while we were gone).

Quite the bedtime plan, but Daddy's always happy if Gabriel's Plan includes a coffee run

-- Dad

Posted by Dad at 10:36 PM | Permalink | Comments (1) | TrackBacks (0)

I think Gabriel is missing school. He wanted to play school all day. He wanted me to walk him to his room every ten minutes. I was suppose to also be the teacher. Then pick him up. I really only complied once but, that was enough for me. Between chores and helping Hannah work on muscle building I'm not always up for doing one more things that are someone else's idea.

I had Mommy guilt because I wanted thirty minutes of uninterrupted time to watch a show that wasn't a cartoon, while Hannah was sleeping. After, repeatedly asking Gabriel to stop asking me questions and reminding him that I don't interrupt him during his shows, I apologized to Gabriel.

He looked at me and stroked my hair. "It's OK mommy, you just wanted to watch your show."

I hugged him.

--Mom

Posted by parents at 08:45 PM | Permalink | Comments (0) | TrackBacks (0)

This is the song of laundry that just won't end.

It goes on and on my friend.

Some people started wearing clothes not knowing where it would lead

And we'll continue washing them Because

This is the song of laundry that just won't end.

Today was laundry day. I try to designate two days a week to laundry. Otherwise it is a constant stream of baskets peppering our walkways about the house. This theory works when I get serious enough on laundry days to eleminate all the clothes in the hampers. So it only happens about once every three weeks. But, I have a goal weekly to strive for.

I can tell you all the excuses why I have problems meeting the goals but, lets face it. The job is tedious and tiresome. I find ways to liven it up but, even my kids have little patience for me working on it. This seems to be a day where there is too much left over so I will be working on it some more tomorrow.

Oh well, Hannah, Gabriel and I played some great games today. On my death bed I won't regret that I played with them rather than finished all the laundry.

--Mom

Posted by parents at 10:18 PM | Permalink | Comments (0) | TrackBacks (0)

I was sitting at my computer tonight, crunching sugar-free Lifesavers (I recommend cherry - tastes like old cough drops), wondering what I would write about when Yahoo recommended a video to me:  the top 10 worst video game commericals of all time. 

Okay.  I remember our family's game systems:  Odyssey (you put a plastic screen up on the tv to be the game board), Ataris 2600 and 5200, our first PC clone (the Franklin:  a gigantic 64K RAM's worth of processing might).  I even met Nolan Bushnell, the founder of Atari (que the choir) at a Young Entrepreneur's conference while I was in grade school.  I also spent tons of quarters at several arcades attempting to master Asteroids, Sinistar, Star Wars, Q*bert, and many others.

So do you accept my Geek Credentials?

Anyway, I don't remember actually seeing Atari 2600 commercials.  I'm sure some were on the tv, but game systems were always an early-adopter, copy-the-neighbor kind of thing.  Either you were the cool kid that got it first or you visited your friends and bugged your parents until they bought one for you, too.  So much has changed

Well, the pictures in the video clip are grainy, but worth watching.  It's amazing to see Activision morph pixelated tv into live action to push Just How Fun That Skiing Game Will Be (sucked, by the way).  My favorite is the grandson that challenges his Grandma to a game of Berzerk.  She rushes down the steps to her house, ready to race her grandson to the arcade.  The grandson reveals the catch, pulling out a wrapped Atari 2600 Berzerk cartridge.  You don't have to go to the arcade anymore.  You can duel Granny in the comfort of your own home.

The funny thing is that Gabriel and Hannah's "granny" (Bubbie - my mom) and I did duke it out.  We kept a pad near the gaming tv to keep track of who had the highest Video Pinball score (me).  One night, I wracked up so many free plays and points that I refused to go to bed.  I was staying up and posting an unbeatable high score (unbeatable because no one would have the focus and, well, free time to beat my score).  Legend, that night, at the Bach house.

Definitely recommended viewing.  Makes me want to hit the game cabinet Janette built me two Chanukah's ago.  A friendly game of Joust, anyone?

-- Dad

P.S.  I know:  two video game posts in less than 2 weeks.  The nostalgia is killing me. 

Posted by Dad at 09:39 PM | Permalink | Comments (0) | TrackBacks (0)

Meet The Kitchen Kids:  partners-in-crime-and-mischief, occassional allies against parental authority, and siblings extraordinaire.

Hannah and Gabriel are playing together more these days.  I took this picture this weekend while Gabriel was helping Hannah sit (she rolled away, seeming to say, "I'll do that in my own time and way, thank you very much!").  Hannah is still threatening to crawl, as you can see, but hasn't quite put it all together yet.  Meanwhile, Gabriel has taken a genuine interest in helping his sister get around, playing with her, and getting her to laugh.

-- Dad 

Posted by Dad at 09:27 PM | Permalink | Comments (0) | TrackBacks (0)

It’s funny I found myself talking about Franchises a great deal today. My father is on a business trip from Florida. Dad and Robert were talking about how well we work as a family unit. My Dad is great he believes that Robert and I would be great business owners. So the day involved a great deal of conversation about what business we would be interested in doing if we had the time and capital to do it.

This is fun for me and a normal part of Robert’s and my dialogues. So, I found it fun to have another player in the game who understands how businesses work.

Imagine my surprise to be watching Terry Jones Medieval Lives: The Monk Show. So it turns out that Monks were a Franchised praying service for War Heroes to invest in saving their souls.

Hmmmm, How would that work with some of the Franchises available today.

Well most people are less likely to be involved in physical combat.

How about Pollution Balance Monks? They would plant more trees and plants to offset the amount of carbon-dioxide and pollution we cause in our daily lives. Part of their vows would involve only using things that could be biodegradable. They would have to vow to leave a negative pollution footprint on their lives in everything they do. (Hey the reality-TV junkies out there would love a show on this) Hey this could be really lucrative.

How about the Television-holic penance Monks: They will not watch any TV but will do enough exercise for you and them. They will go play ball, hiking, skiing, and swimming and even take vacations. I think my father in-law for a small fee will do these social penances for you.

The McMonks will not eat fast or junk foods. They will eat only organic and exercise everyday and all day, when not eating.

I would love to hear some others ideas on Modern Monk Franchises.

Posted by parents at 10:13 PM | Permalink | Comments (0) | TrackBacks (0)

Last night, I celebrated at least three, major Hannah tantrums.

After work, I met the family at Gabriel's karate class, and we took the kids to McDonalds.  Janette and Gabriel picked up the food at the counter while I held Hannah nearby, singing to her, spinning her around, tickling her, etc. (being Daddy).  As we took our seats, Janette ate her burger while feeding Hannah through her g-tube. 

After dinner, we split up.  Hannah's patience seemed to be wearing thin, so she and I took a walk around the Barnes and Noble Tanasbourne center.  Gabriel and Mom stayed at McDonalds to play in the playstructure there.

Usually, a walk is a cure for Hannah's boredom (my initial guess on Hannah's mood).  Tonight, no go.  At Wherehouse (my first retail alma mater), Hannah had her first tantrum, crying and kicking at the Kid Cart's footrest.  We stopped looking through the store.  I went down on my knees to talk with Hannah eye-to-eye.

"Hannah, stop."  I signed for stop with my hands. 

Hannah acknowledged by calming down for five seconds, enough to give me her sign for lay down:  a near-horizontal leaning of the head.  Ah.  She was tired.

"Hannah, we can't lay down here."

More screaming.  I gave her a time out, turning her chair around away from me, giving her some contemplative time to calm herself.  She pulled herself together, and we walked out the door, heading to Barnes and Noble.

Starbucks line:  tantrum #2.  "Hannah, stop." I signed again. 

She complied briefly, but emphasized she really wanted to lay down with an emphatic tip of her head almost horizontally left.

"In a little while," I promised.  "Let's go look at books!"

And tantrum #3 launched itself shortly thereafter.

Hannah got more than her fair share of time outs, and I got multiple opportunities to appreciate my daughter's ability to vocalize loudly via the Pasi-Muir on her trach.  I struggled with letting Hannah know I understood what she was saying, but I was choosing not to comply.  Eventually, I threw up the white flag, rang Janette's cell phone, and said, "Hannah's done.  She's tired and ready to go home."

After confirming that I did not say, "Going to Canada" via intermitent cell phone bursts (my spontaneous jaunts with the kids are famous, though I've never gone quite that far), Janette promised to leave the playground and come pick Hannah and me up.

Meanwhile, Hannah and I dueled it out near the checkout line.  Screaming and kicking.  Time out.  Reconciliation.  Repeat.  Janette arrived shortly thereafter, and we all loaded into the car and headed home.

Hannah is sleeping quite well now at 3am.  She did get about an hour's nap tonight on returning home, and that seemed to do the trick for her. 

Me?  I am still appreciating the fact that Hannah is oh-so-finding her voice.  She is my three-year-old princess, increasingly sure that the world revolves exclusively around her.  At least for now, I can step out of my Nurse Dad role and just be Dad:  dolling out tickles, time-outs, songs, and kisses, often in equal proportions.  In-the-tantrum-moment, this isn't the first thing that crosses my mind.  This morning, though, with the luxury of hindsight and currently-sleeping-kids, it is a thought I can entertain.

-- Dad 

Posted by Dad at 02:07 AM | Permalink | Comments (0) | TrackBacks (0)

With both children home, a great many days I feel like a ping pong ball. One moment I’m working with Gabriel learning to read and write, the next moment I’m trying to get Hannah to stand.

This morning definitely felt that way. Gabriel has been watching these shows with a commercial for Aqua Dots. I must admit they do look cool. I’m not willing to commit to a TV mail order experience unless I know for sure that he would really use them. I’m an artist and have tried multiple ways to gain his interest in art projects. I have also been looking for ways to promote Gabriel's fine motor skills.

At the craft store I picked up Fuse Beads with patterns for cars and trucks. I pulled them out as a surprise and he was actually excited. He wanted me to open them immediately. So we actually worked on it for about 45 minutes. During that time Hannah was getting annoyed. The pieces were too small to be around Hannah. Besides being choke-able, they would fit in her Trach way to well. (Plastic in lungs not good) So I couldn’t bring her near us.

Gabriel didn’t want to do the project alone so about every five minutes I would go down to Hannah sing a song or try to change the toy she was playing with. Then I would go back to beading with Gabriel.

Luv for Mommy and 4pts for Gabriel and Hannah

--Mom

Posted by parents at 08:16 PM | Permalink | Comments (0) | TrackBacks (0)

Man your treadmills, your elipticals!  The Bicyclist Cometh.

Janette and I both have family visiting Oregon, and one family member suffered a heart-attack conversion to uber-exerciser several years back.  He spends over three hours a day exercising.  While we love his new health and his advocacy for healthy living, it certainly raises the stakes on my expanding waistline. 

It feels kind of like when I was a kid.  My mother's parents would visit for a few weeks at a time from Denver.  They were observant Jews; we were raised in the Reform tradition.  But before the plane touched town, our house magically kosher-ized.  All the traif disappeared.  We enjoyed their visit (particularly my grandmother's chocolate crinkle cookies), waved goodbye, and the house slunk back into its prior, non-kosher state.

Today, same thing:  except now we're re-examing our schedules to make time for exercise and hiding all the high fat foods.

-- Dad 

Posted by Dad at 07:00 AM | Permalink | Comments (0) | TrackBacks (0)

Every morning after I get report from Hannah’s nurse I turn on our XM radio. I love listening to the kid’s XM channel 116. In the mornings it has Kenny Curtis and the Petting Zoo. A radio show where the DJ plays great songs geared for children and has a cast of characters based on common Celebrities. He has a sloth character that speaks like Steve Wright. There is a fast talking somewhat bitter chipmunk whose premised history was with the Chipmunks before they were famous. There is this skunk that talks like the character Forrest Gump. There is a Llama who doesn’t like to be touched though he is in a petting zoo. There is a porcupine that talks like Andy Kaufman Latka who wants to be in the petting zoo, he doesn’t understand why being a porcupine excludes him from that honor. There are more but, I think you get the picture.

Today, there was a segment where one of the characters was telling jokes. I didn’t realize it at first but at the end of each punch line Hannah would chuckle. I thought they were funny. I wasn’t laughing but my little girl was giggling. By the end she was rolling and laughing. I asked her if she found the jokes funny and she waved her hands in the yes motion emphatically.

My heart swelled with pride. I tell people she understands conversations. It is nice to have it reinforced in that she doesn’t just understand the words but finds the humor in puns and jokes.

--Mom

Posted by parents at 09:39 PM | Permalink | Comments (2) | TrackBacks (0)

Tonight, in Pixeltown, Blinky has called a truce with arch-nemisis PacMan, invited him to the local pub, and sat down to reminisce about the good 'ol days:  an impromptu memorial to their creator who is retiring from Namco according to MSNBC.

Remember PacMan?  DigDug?  Zaxxon?  Sinistar?  Ataxx (late, but great)?  Oh, the days when you could go to a video arcade and spend a couple of hours on a roll of quarters!  Game play was emphasized over graphic density.  Everything felt fresh & fun.

In case you, too, remember those days (and have blocked out the video arcade, fresh-gym-aroma), here are some links & comments to help you relive the experience:

• We actually have a fantastic classic video arcade in Portland, OR.  No, I'm not talking about Wonderland (yuck); I'm talking about Ground Kontrol (511 NW Couch St.).  Of course, I had to look up their link for this blog and noticed they now have a Discs of Tron game.  No WAY!  Scheduling my trip there now....  Seriously, take a look at their game list and be prepared to be amazed!
• Buy a Wii.  Nintendo still "gets it."  Game play is the first consideration; graphics, way second.
• Purchase a copy of Arcade Fever by John Sellers.  One of the most comprehensive "golden age" video game books I've seen (okay, owned).  Cool interviews, too.
• Build your own game cabinet.  Seriously - much better playing the original games with the original controls.  Since I play by the rules, I won't use MAME, but we are running our Xbox through our cabinet & we've loaded some good PC games through it, too.  Of course, Gabriel hogs the game cabinet a bit (Sonic the Hedgehog), but I've been known to Joust friends, too.
  

Yes, I could go on and on.  Yeah, I have the music collection to along with my arcade obsession, too.  Anyone up for PacMan Fever?

-- Dad 

Posted by Dad at 09:24 PM | Permalink | Comments (0) | TrackBacks (0)

Today I got to witness a typical sibling moment. The kids and I were going to pick up Robert from work. Hannah respiratory wise is doing well this past week so I buckled them in. We drive a Mini van so I usually have Gabriel in the middle and put Hannah’s wheelchair next to him while the Hannah and her caregiver sit in the third row. Today, I put Gabriel’s seat next to Hannah’s.

I start the car running for the two-block drive. Gabriel starts rubbing his hand in Hannah’s hair. She laughs. When we stop at a stoplight. Gabriel keeps doing it and screaming something silly. Hannah decides she has had enough. She shakes her head in the no direction.

"She’s saying No, Gabriel"

He keeps chattering and touching her. She shakes her head and does a sweep away gesture with her hands.

He is still not getting the point. I wait a few beats to see if he gets it. No, he is a complete bull in a china shop. I admire her sudden dexterity and stifle a laugh at this typical sibling behavior. "Gabriel, stop it now. No means no." I stare at him through the rearview mirror. He looks down then goes to do it again but stops when he sees me looking.

"Mommy, stop watching!"

--Mom

Posted by parents at 08:57 PM | Permalink | Comments (0) | TrackBacks (0)

In a recent Oregonian article, Abby Haight heaped praise on Girl Scout Troop 1573 for their involvement with the Providence Center for Medically Fragile Children's young women.  It sounds like the praise was well-earned:  members of the Troop included residents in activities, helped build wheelchair-accessible furniture, and recorded audio books for Troop members at the Center. 

Over 14 years, this Troop stayed involved with the Center and its residents.  For some reason, never really explained, the Troop is leaving the Center.

But the article itself left me cold the morning I read it.  I read it several times (and again tonight), wondering:  who are the Girl Scouts, the young women, the people at Providence Center?  What do they do?  What do they like?  How do they plan to keep the Center's Troop running?  Do they like being in Girl Scouts?  Are they fans of Do-See-Dos or Thin Mints?

The problem with the article is that it takes the praise and sympathy angle.  For example:

"And [Troop 1573's] regular visits to the center are ending.

But the troop is leaving an enduring gift.

Members earned their bronze medal, the top service award for junior Girl Scouts, by turning favorite children's stories into an audio library for the center."

Also:

"Their [the Troop 1573's members] voices grew familiar to the center's girls. The girls don't communicate with words, but their smiles and body language spoke volumes about the bonds that were forged."

Gag.  All I learned about the Center's young women was that one Center Scout will continue to hear her friends voices through the audio books.  I was also given the tantalizing bit that Scouts at the Center have earned a wide range of badges, worked on their own projects, and sold tons of cookies.  That's what I really wanted to hear about.

Might seem picky, but our family gets a whole range of reactions when out-and-about.  Mostly, we experience avoidance, occassionally questions, and sometimes engagement (rare, but very cool).  I fully plan for Hannah and Gabriel to be involved in a youth group or something equivalent.  We'll appreciate the support offered by others, but more likely than not, we'll focus on all the great things our kids can do, both with the proper supports and completely on their own.

-- Dad 

Posted by Dad at 08:37 PM | Permalink | Comments (0) | TrackBacks (0)

This weekend began our new regimen of two nights in a row on duty with Hannah. Since, she has only needed the ventilator at night our nursing hours has been reduced. Since, I still need to have some day shifts we had to sacrifice some night shifts to accommodate that.

We had a surprise nurse cancellation but went ahead and decided to move forward with our plans. We have lived in the Portland, Oregon area now for over 5 years, and I have never been to the city’s biggest event. This weekend marked beginning of the Portland Rose Festival this year. We decided we were all going to go.

I slathered up both children with sun block and dressed them in cool clothing then packed up the car. We were originally going to try to take the Max (the local light rail train) but decided we needed faster transportation if things with Hannah went south. So we drove down town.

Gabriel was in rare form of asking us if we were there yet twenty different times. Hannah was bright eyed and smiling while she grabbed my arm. She lavished my arm with kisses and hugs all the way there. True to form she fell asleep two minutes before we parked. Gabriel had tried to keep her awake he kept looking back and yelling, "Don’t go to sleep Hannah!"

We found a parking lot near the event for a whopping 7 dollars. Yeah, laugh all you want people from Los Angeles and back East where 16 dollars is the norm for event parking. For Portland 7 dollars is pretty steep.

We made it to the event pretty fast. Hannah did ok with her two-minute nap since she was in a new place. This was officially her first fair experience.

We were greeted at the gate by women in pretty pirate garb who were guarding the privies. (The most important doors in any public function.) We started to walk the booths. We found one selling satellite TV connections. We stopped there because it was the company we were using and went to try to upgrade our PVR. We were informed that our particular company didn’t care if you were an old customer all they cared about was new customers. So we switched providers. While Robert was working on the paperwork, I walked with the kids. Hannah in particular and true to three-year-old behavior doesn’t like to stand still. So I found a tent-exhibiting animals from the rainforest and we went into the warm smelly tent.

Navigating Hannah’s wheelchair through crowded uneven ground was a challenge. I doubt Hannah really saw any animals she was to busy watching all the people. Here and there, the crowd was peppered with little girls in tutus and dance costumes. She tended to focus on those. Gabriel just wanted us to move forward toward the next thing so I was the only one who looked at the animals. Shrug.. The fans in the tent were nice to stand in front of.

From that tent I saw the sponsors tent so we went there and I did my consumer duty and bought some event merchandise. Several pins, a future rose princess T-shirt for Hannah, a pirate’s life is hard T-shirt for Gabriel and a cooking apron for me. Robert met us there. It was almost noon at this point and we realized we should sit down somewhere to feed Hannah and ourselves. We found a shaded tent. The tables and chairs were tightly configured so we were doing a great deal of: "excuse me", "pardon me" and "Can I just move that over slightly". Of course when we got to the table we spotted someone else arrived too. We all decided to share.

Robert went forging for food while Hannah; Gabriel and I made us comfortable. I pulled out Hannah’s g-tube and syringes and our table companion decided to find another table. Oh well. Gabriel walked around to Hannah’s other side and spent time trying to make her laugh. She was still mesmerized by the people around us. We had found the tent right by the dancing exhibit that featured all the dancing troops. As the people waxed and waned so did the bright costumes. It was the easiest time eating out with Hannah I’ve ever had. She never got bored and demanded up.

From there we saw some pirates and colonial maritime officers. One of the officers sang for Hannah. Gabriel got attention because his baseball cap for the day was a Pirate of the Caribbean one. Gabriel was cute and hid his hat from the officers.

We then headed to the area Gabriel was interested in the most the midway full of rides. LOL it has been awhile since I’ve been to a fair. The last time I went there were physical tickets to exchange for rides. Now they give you plastic cards with the ticket amount linked to the number. So the operators just scan the card to take your tickets. Wow, how high-tech and less cumbersome!

--Mom

Posted by parents at 02:23 PM | Permalink | Comments (0) | TrackBacks (0)

Many years ago, nearly post-high-school, I met Ray Bradbury at a book signing.  I would put his name in HTML flashing lights if I weren't afraid of irritating all those with non-supporting browsers (including me, I think).  Ray Bradbury is one of my favorite storytellers.  I began reading him in first or second grade, and I've poured through many of his books multiple times.

I approached the table at a mall bookstore.  He asked my name, and I handed him several books to sign.  Then I asked him, "Um, if you were to give any advice to a young writer, what would you say?"

He stopped signing and looked sternly up at me.  "Write.  Every.  Day."

Gulp.  His words thundered around me.  I cringed.  That was the absolute last thing I wanted to hear.  Writing was art, I thought!  I needed to be in the right mood, the stars had to align, my favorite pen had to be nearby.  If you're reading this, you're probably familiar with all of the excuses; maybe you had a few original ones yourself, too?

Anyway, this blog has finally moved me closer to his original advice.  I have to admit he was right.  If I write everyday, ideas flow more easily and more abundantly.  Hopefully, I improve my craft, too.

That's a long way of getting around to my introduction of Kintropy's Blog Policies.  Yeah!  I love Policies!  This is what my work-life of memos and procedural documentation has best prepared me .  And it seemed like we should get around to doing this, so...

Kintropy's Blog's Purpose 

Still figuring that one out.  Both Janette and I enjoy writing about our experiences as parents, particular as parents in a family that experiences disabilities.  We also have opinions.  Strong opinions.  I figure you'll start seeing those more and more of this as we get used to this space and format.

We also use our blog to promote our website, www.kintropy.com, and our favorite past-times:  reading, playing video games (lots and often), watching movies, etc.  You'll see us list these are recommends on our blog and main sites.  Click through and see what we're recommending.  Our tastes are a little eclectic at  times, and we might turn you on to something you wouldn't otherwise discover.  Also purchases through some of these links help to support our blogging and other writing activites.

Blogging About People We Know 

Outside of our unfortunate children, we work hard to avoid attributing public names to stories about family, friends, work teammates, and others.  Sometimes, we do need to refer to honorary titles (e.g. so-and-so's dad) to move the story along, but we do have a policy of not outing folks we know if at all possible.  Yes, if you are reading this, you can breathe a sigh of relief .  If you do find something that you feel is a little too close to identifying you (and you don't like it), let us know.  We'll be happy to adjust as appropriate (editorial comment:  at our discretion).

Comments Encouraged 

We love receiving your emails, ideas, and encouragement.  We also love getting public comments on our blogs.  Feel free to leave them.  Really.  Lots and lots.

We do review comments for spam prior to publishing, but we will publish just about any comment that is topical to a blog and that does not appear to be libelous, break laws (both in our non-legally binding opinion), etc..

Attribution:  Both Ways

We are just getting used to the whole blog thing, but we do see the need to attribute ideas and quotes with links and such.  If you notice something in our blog that deserves attribution, but did not receive any, please let us know, and we will correct ASAP.

Similarly, feel free to link to our blog content.  We operate under a Creative Commons copyright that restricts commercial use, but allows for attribution and non-commercial use.  See our Creative Commons license on the blog site for more info.

-- Dad 

Posted by Dad at 08:36 PM | Permalink | Comments (3) | TrackBacks (0)

Texas has given us many things:  George W. Bush, assembly-line death row, a good chunk of Americas Big Oil industry, and ZZ Top.  On the plus side, however, Texas has also given us the late Molly Ivins, Ann Richards, Gene Roddenberry and, of course, Texas Hold 'Em Poker.  It is this last one which has consumed my weekend.

No, I did not run off, abandoning my family to visit the local casino.  I purchased and downloaded