Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Wednesday, July 28, 2010

Rockwood Outlaws: 2nd at State



Pictures of Eric pitching at the state tournament...Thank you Beth Mumford!

We beat teams that most people thought we had no chance of beating - Camas, Clackamas, and Stayton (word was they were "stacked").  Bam Bam hit two home runs in one game!  Stellar pitching from JJ and Eric.  All the boys stepped beyond themselves into greatness.  Assistant coach LJ had emergency surgery for a ruptured appendix on Friday - he was back on the field on Sunday.  It was hot...the high 90's.

In the end we were beaten by Jefferson, a small town team as scrappy as ours.

God bless the boys of summer!

Thursday, July 15, 2010

Jodie's doc visit

Yesterday's venture taking Jodie to the foot specialist proved challenging.

We were in line for valet parking.  One car in front of us.  No one appeared to be helping them.  I got the lift out for Jodie.  We were running late.  I was trying to get the cars behind us to scoot back.  The valet guy came and told us we had to pull ahead.  Jodie back up the lift, back to her seat...I pulled ahead.

New dr., so many forms to fill out.  It's all on the computer...doesn't matter.

The billing person called  us back to a room.  Jodie had called our primary care provider and our insurance.  We had the referral.  The billing person said the referral had been filed July 2nd, but it had not yet been processed.  The visit would only be covered as out of network.  Higher deductible; less coverage.  Our choice was to go home and make another appointment, or keep the appointment  and pay more.  We kept the appointment.  The billing person was  very professional; we  thanked her.

Young dr., very nice.  I think she is the first African American female dr. we have seen.  She took Jodie's boot off, examined the Achilles tendon.  No break there.  The top of Jodie's foot was tender...there is concern there.  X-rays are needed, the the dr. said we can wait until the referral is sorted out.

The dr. wants to go the non-surgical route if she can.  That made us happy.

Afterwards, Jodie and I stopped at Applebees for lunch to go.  We took it to the park,

Sigh...

Tuesday, July 13, 2010

Welcome home, son

Workmate Shari accused me of worrying like an old woman.  Pastor Craig's sermon yesterday (a home run btw) about how each of us have our 17 mile treacherous walk to Jericho spoke to me.  As I was applying the sermon to Jodie and Ma2, they pointed right back at me.

Yes, I missed Eric during his week-long mission trip to Montana.  The train ride was long.  He slept a lot yesterday.  He helped paint a house, stayed at Heart Butte elementary school, attended a Blackfeet powwow, learned of how the Blackfeet were mistreated by the white man.  He now has Facebook friends in Arizona and Minnesota.

Much more to hear of the trip.

We have a great kid.  Some day he will grow and be off to mark his wonderful mark in the world.  We will one day need to let go of Eric.  That day is not today.

Baseball playoffs this week.  If we win district, we go to state playoff next week in Corvallis.

Friday, July 02, 2010

A risky proposition

Eric Nelson rides his adult trike around Gresham. A 35 year old cp'er, the trike is his lifeline. He does odd jobs and returns pop cans. He's a volunteer "geek".

Eric maximizes his ability to make this world a better place, the highest calling any of us have.

Interesting story here:

A risky proposition

He was stopped by the Gresham police for riding on the sidewalk, but then he was hit when he was walking his trike in the bike lane. Adults are not allowed to ride bikes on sidewalks, but Eric does not feel safe in the bike lanes. His bike is banged up, as is his confidence.

I did not drive until I was out of college. I rode my yellow trike everywhere in Corvallis - to class, to the grocery store, to the laundromat, to church...everywhere. I rode sidewalks on busy streets. I had a close call with a car at a strip mall driveway one time.

I don't know Eric personally, but I see him around all the time. The Gresham police chief will work with Eric to figure out what is best for his safety and the public's. Eric's confidence will return.

Your community needs you Eric. Hang in there!

Wednesday, June 30, 2010

Torn tendon?

Jodie saw Dr. Molly yesterday. She thinks Jodie may have torn a tendon in her foot last week when her foot got caught in the door. Dr. Molly scheduled Jodie to see an orthopedist who specializes in feet and ankles in a couple weeks.

We are hoping to get Jodie's power chair back from the shop soon. She is using a manual chair with leg lifts for now.

Lots going on at work, so she can't just take time off to relax.

Prayers and good thoughts for Jodie.

;)

Friday, June 25, 2010

Jodie scare

Jodie called me this afternoon at work. She was in a lot of pain and was really upset.

She is still using a loaner power chair. We had her power chair home from the shop for one day last week when we had to take it back. The guy said one more contact needs to be changed. The part should be in next week and the chair will be ready next Thursday. I don't know why it takes two weeks to fix a contact...but we are at their mercy.

Jodie decided to go across the street to Burger King for lunch today. He feet hang on the loaner chair; their is no leg lefts or foot straps to secure her feet. When she was leaving BK, her foot got caught in the door. She said her foot bent backwards.

When Jodie returned to her office, her left leg was writhing with spasms. She was not able to stand at all.

She called me to come get her. She was in pain. We were both scared about what may have happened to her foot. I left my office, picked up Eric to help, then went to pick up Jodie. We got Jodie on the lift and into the van. A couple caseworkers helped get Jodie from her chair to the back bench seat. We have not figured out how to secure Jodie in her chair in the van yet.

I took Jodie to immediate care. An x-ray showed no break, but it is a sprain. They gave her a boot.

We are very thankful that there is no break, but it is proving to be quite the challenge. Jodie's foot is not supporting her at all. We are using my walker as a chair to get her around the house, but right now we are trying to figure other things out.

Saturday, June 19, 2010

...But have a good life!

Yesterday I went downtown (Portland) to have lunch with Sam. We roomed together at Varsity House down at Oregon State 27 years ago. We meet together a couple times a year to talk about family, faith and politics.

I am his one honorary liberal friend. Awe!

Usually I pick Sam up in our oversized Sprinter van and we drive somewhere for lunch. We were going to do that yesterday, but I actually found a parking spot. It was only two blocks from the Oregonian building where he works, right in front of a couple mail boxes.

It was a gorgeous day. I had room to unload my scooter, so I did. I scooted down and met Sam in front of The O. Rather than wishing him a belated "happy birthday", I commented how thin and white his hair was becoming.

We headed down to the Pioneer Place food court. Sam walks fast. I was keeping up with my scooter.

This one block we walked down, this is tricky to explain...there as a curbcut for a driveway, then a curbcut up to a narrow sidewalk that led to a larger driveway to a underground parking garage.

Sam and I were making our way down this narrow sidewalk at a good clip. We got to the end. A ten inch curb. No curbcut.

Sam looked at me and said "Can you go over that?" I think he read my thoughts - Yes Sam, I'm going to back this puppy up a bit, hit 90, and fly from curb to curb...instead, he helped me back up.

Thinking about it now, I think there should a sign at the beginning of the sidewalk to warn that there is no ramp at the other end...something like "We recognize the needs of the disabled enough to put up this cheesy sign, but we care to little to do anything about it. There is no ramp at the end of this sidewalk...but have a good life."

Please don't forget the "But have a good life" part...it's nice to know you're thinking about us.

After lunch, I loaded my scooter into the van. I tried to do a trick that works some of the time - I tried to close the back doors from inside the van. I pulled the left door part way, put the lift up, then tried to reach over the top of the lift to pull the door closed. As I was flailing about trying to do this, passing cars started waiving at me, as if I was waiving at them! It made me laugh.

I ended up going down the lift, putting it back up, closing the back doors properly, and going in through the front.

Sigh...

Friday, June 18, 2010

Power chair woes

Jodie got her power chair last December.

A couple weeks ago, Jodie's power chair surged while she was in the break room at work and she ran into the sink.

We took off work Wednesday afternoon. Jodie's power chair was ready to be picked up. The loaner was ok...bald tires, no leg lifts to prevent Jodie's feet from swelling...but we were happy to have a loaner.

When we picked the loaner up, the throttle pad was still bent up as from when the chair ran into the sink. Jodie went in and talked to the guy in the shop. He thought it had been bent up for her to access easier. He assured Jodie that the power chair worked perfectly.

The next day (yesterday) Jodie IM'd me..."call me." I knew something was not right. I called. Jodie was in tears. The lights were flashing and the chair was stalling every time she tried to move.

So disappointing!

The hardest thing with disability is being at the mercy of others. The power chair is Jodie's independence. Jodie called the shop. We are taking it back in this morning. We have no choice but to follow what our insurance and the shop say to do.

The only comfort we have is that if the chair turns out to be a "lemon" they will get her a new chair.

How many months will that take?

Monday, June 14, 2010

Baseball and grads; parking and elevators

Saturday we drove down to Linfield College in McMinnville. Nephew Vance was in the 1A-2A-3A state all star game. Vance pitched a stellar game...most valuable player!

We had to leave before the end of the game to go see niece Amanda graduate from Tualatin. The graduation was at the Memorial Coliseum. We have not been there since we got our eight and a half foot tall van. We found a top of a parking garage where we fit, even though we scraped the maximum height sign. Eric joked how one day we're going to decapitate our van.

Jodie, Eric and I got in the elevator to go down to street level. As we got out of the elevator, one of Jodie's wheels got stuck and Eric's foot got stuck. We should have gone back up a half floor, but neither Jodie or Eric were going to get back on the elevator. We found a way around to the sidewalk.

Jodie and I found the last 2 wheelchair spots on the far left side of the semicircle seating. Eric sat up high with Jodie's sister Pam. 410 grads...3 hours!

Afterward we met up with Eric. The handicap door closed on me; a very nice guy pried it open for me.

Just a mass of humanity! All Jodie and I could do was go real slow and wait for people to part so we could get through. I don't care for crowds, but people were really nice and let us get through.

Rather than use the elevator in the parking garage, we went around the block to avoid it. Eric did not complain; he did not want to go back in that elevator.

We made it to the van and got Jodie's chair and my scooter loaded before the crowds came. When we were ready to leave, the crowds were there so we just waited.

We made it home by 11. It struck me how we get around and participate in life. It's not always pretty and graceful - a scraped top on our fan, an elevator trying to swallow Jodie and Eric, a handicapped access door trapping me - but we make it through.



Wednesday, June 09, 2010

At the dentist

Jodie had a dental appointment this morning, the first since getting her power chair in December.

I parked at the opposite end of the building from where I usually park...easier place to park our rig. I decided to come in with her...glad that I did. The doors are all so heavy!

the elevator was at the other end of the building. It is so dark!

It would be dreamy to not have to deal with disabled stuff. I sometimes think people should see us in action.

Thursday, June 03, 2010

"Um...I'm stuck!"

Jodie has had her power chair since Christmas. It began stalling on her repeatedly, so two weeks ago we took it into the shop. They found a loose contact in the throttle, so they fixed it.

This week the chair started stalling again. Jodie called and made an appointment for us to drop the chair off at the shop this morning. Yesterday the chair did not stall at all, so this morning Jodie called and cancelled the appointment.

Just after Jodie got off the phone from cancelling the appointment, she went into the breakroom at her office to fill her water bottle at the sink. As she approached the sink, her throttle stuck. She rammed into the sink and got stuck.

Another worker came into the breakroom. She greeted Jodie. They were chit chatting, then Jodie said "Um...I'm stuck!" The worker was not able to free Jodie, so Jodie asked her to get the security guard.

When Jodie returned to her office, she had to call the shop back and tell them what happened. After lunch, I went and picked Jodie up and we took the chair to the shop.

I was proud of myself! I backed Jodie's chair onto the lift without flying off the lift. I have had nightmares of that. With the headrest on her chair it is hard to see backing up. I have trouble controlling the joystick throttle. And then, when you are turning the chair as you are backing up, the wheels swivel in funny directions making it hard to back up straight in such a short distance.

After we dropped the chair off we went to pick Eric up from school. We had an hour and a half until Eric's baseball game. We went to the store and sent Eric in to get us a snack.

The shop called. They needed to keep the chair overnight. We drove to the baseball field. It started to rain; within a half hour we got the call Eric's game was cancelled. Third rained out game this week.

Jodie will be staying home from work tomorrow since she does not have her chair. Hopefully I can go pick it up tomorrow, or the shop will have a loaner for me to pick up.

Another day.


Monday, May 31, 2010

Trusty GPS and Google maps?

This lady is suing Google over walking directions that led her on too dangerous of a path:

Woman, hit by car, sues Google for faulty directions | Technically Incorrect - CNET News

We were in Bend over the weekend. Trying to find our motel, our Garmin gps led us off the highway, around a few blocks, and back onto the highway.

That instant when you realize the gps has led you astray and you have to use your brain to figure out the needed correction is really frustrating.

We were trying to find a place for breakfast yesterday. We found out the Denny's on the Garmin is no longer a Denny's. Some of the baseball venues we needed to find were not even on the Garmin. Three teammates were late to a game because of that.

I wouldn't sue Google over a faulty map, or Garmin over wrong directions, but I do understand the frustration.

Yes, we should carry maps and not over trust technology...but then we need to learn to read the blasted things again!

Friday, May 14, 2010

Bad to the bone!

Goodbye Deborah

There was nothing fancy about her, except for her name. Deborah. Never "Deb" or "Debbie", but "Deborah".

Well, she did have a fancy car...a PT Cruiser when they first came out. She was so proud of that car.

She began working for the state of Oregon Child Welfare, East Multnomah Branch, shortly after I transferred there in 1995. I sat by her for a little while. Her first job was inputting in-home services...a simple job. She did it with vigor..."These people need to get paid," I remember her saying.

I knew she could run the place. She had the smarts and the energy. Deborah intimidated some people because penchant for perfection and not being shy to share what she knew. I was not intimidated; she inspired me to work harder at being good. She moved on to Midtown Branch as a IV-E eligibility worker. I am a IV-E eligibility worker as well. Most people do not want our jobs. We piece together financial information, court orders, case narrative, notes and policy. No one sees our work except the occasional auditor. I changed jobs for a couple years in 2002. When I returned to IV-E, I met with Deborah and the meticulous desk manual she had put together for the job. Deborah went on to become a lead worker at Midtown, to being an office manager in Beaverton.

I did not know too much about Deborah's personal life. I know her mom lives down in Lakeview, Oregon. She lived in an older mobile home and was handy at fixing things. She did not have a family of her own, but, being a cat person, active with her neighbors and involved in her church --- she had family.

Late last year she retired. I asked Jeff, a recent coworker of mine who was working for Deborah, to let me know of any retirement party. Jeff said she did not want one. She had some kind of tumor and was very sick.

I received and IM from Jeff on Wednesday letting me know Deborah had passed. We knew it was coming, but it hit me kind of hard. I started to cry. I ran out to the van and gave Jodie a call.

The graveside service at Carus Cemetery, a small country cemetery a mile of the main highway outside of Oregon City yesterday. The service was at 2. I got there at 2 and the service was already happening.

I parked the van and got my walker out. The walker made too much noise on the gravel, so I hustled across to the grass where the moms with babies were. I was really moved. There were a crowd of people saying goodbye to Deborah.

I heard a couple bluegrass hymns and the service was over. By 2:08 the funeral was over. Everyone headed for their cars. I waited for the cars to clear before I started the van. I slowly drove down the road closest to the casket. It was a beautiful white casket with white roses on top.

The sky was blue, the sun was warm, and the country setting was gorgeous. I joined the long line of cars heading down the country road to the highway. As I drove by the Christmas tree farm and watched the guy who was out there mowing brush, my mind wandered...

Coworkers are like family. You work together, break and have lunch together, you talk, you watch the clock together, and sometimes you annoy the
heck out of each other. Bonds form. You don't realize how strong the bonds were until you get the phone call, the email, or the instant message telling you the bad news.

Another thought is to remember how important today is. Tomorrow may never come. Some of us drag ourselves through our daily jobs looking forward to a happy retirement tomorrow. It's not bad to look forward to tomorrow, but take care of today in case tomorrow does not get here.

The crowd around Deborah's casket, the mamas with the babies back from the crowd, the long line of cars...all in tribute to Deborah.

Goodbye Deborah.

Tuesday, May 11, 2010

Sunday, May 09, 2010

"Temple Grandin"...Must see!

You need to see the HBO biography titled "Temple Grandin".

The other night I watched this movie by myself. I watched it again with Eric and Jodie yesterday. I will probably watch it again and again.

Autism is something we all know something about. This movie allows you to actually experience autism through the eyes of Temple Grandin, a very high functioning autistic woman.

Movies about the disabled follow a pretty standard mold. Begin with the hopeless diagnosis of whatever disability, show the trials and the efforts to overcome...more hopelessness. In the end, meaning is found, hope is realized.

For some of us disabled persons who are less accomplished, these “perspirational” movies can be a downer sometimes. We know the hopelessness, the trials to overcome, but we have not all found the meaning and realized the hope.

This movie mostly fits this model, but the greatness of this story is the blurriness in the line between Temple's greatest hopelessness and hope. The women whose great image-driven mind designed a more humane way to handle cattle (over half the slaughterhouses in the country use Temple's design) is the same women who freezes at the sight of automatic doors at the grocery store, and who cannot deal with human touch.

Eric commented that Temple's greatest ability came from her disability. That is what struck me as well.

I don't want to give away much of the movie to you because I want you to see it.

I feel that Temple Grandin and this wonderful movie about her shows how our biggest disability, our most glaring foible, our deepest hopelessness might be the doorway to realizing our greatest achievement.

If we can realize this about ourselves, and if we can, with the help of God, begin to realize the potential of other people around us, maybe this world will be a better place.

Perhaps this is part of what Jesus was getting at when He said to love our neighbors as we love ourselves.