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

Thursday, October 27, 2011

Laying back with shades on...

Like an old friend, I stop in to see her every six months...and we chat.

Today she sat me down in the chair, leaned me back. She offered me a pair of shades to wear; I accepted.

She saw Eric last week. She was happy to hear how well he is doing in school and in sports, how tall he is and that he is driving. I tell her about the new computer system at work and how it is making Jodie and I go nuts.

She shared with me that she had just returned from a trip from LA. She had been there for two weeks with her daughter, who had to have a double mastectomy and was fighting an aggressive form of cancer.

I did not really know what to say. I really could sense her pain. I started to pray for her daughter. I babbled on so as to not let the conversation drop. I then told her "One day at a time." It is really the best we can ever do, but sometimes we fool ourselves into thinking that we have a semblance of control over life.

As she cleaned my teeth, yes, the dear lady is my hygienist, I noticed my lower jaw was doing the cerebral palsy shake thing. I wondered how often it does that without me knowing it. I realized that I am likely this hygienist's toughest patient that she sees in a year. My inward complaining "Man! This always takes so long!" turned to "Man! She she really treats me with patience and grace."

I got back to work. I had several IM's going in no time...all work related, of course, I had a "dear John" email for a job rotation I was really hoping for. I told Justin I didn't want to open it...but I did.

Made me realize that things happen for a reason, or don't happen for a reason.

We are just called to be there in the moment...even if it is laying back with shades on.

Saturday, October 15, 2011

Off the bus!

A local uproar is being made about a local lady who was kicked of the bus for failing to quiet her crying baby.  The driver has been disciplined, though Tri-Met cannot disclose what the discipline was.  It is probably a letter in the driver''s personnel file that stands to be removed upon appeal if the driver cares to do so.

Many passengers got off the bus with the lady and the baby - a sign of solidarity against the bus driver's unreasonable demands.  I think it is wonderful the support of the other passengers, all the media coverage and the public outcry.

At the same time, I am bothered at all the attention this story is getting.

Twenty one years ago...Jodie and I were newlyweds.  We were living in those old brick apartments behind Carr Chevrolet in Beaverton.   I was working for the child welfare office in Hillsboro; Jodie was working for for the Center for Hearing and Speech up on the hill..  I would race home from work in my '70 Nova (they can go fast...I've been told)  and I would wait for Jodie to come home on the bus.

Jodie would take the bus from up on the hill, to downtown Portland, and transfer to the Beaverton bus.

One day I was home waiting for Jodie.  The phone rang.  Jodie was calling from downtown on a pay phone. She was crying.  "The driver won't let me on his bus.  You need to come and get me."  I hopped in the Nova and drove downtown.  Jodie was waiting on the corner, shaking with anger and tears.

Jodie was walking with crutches at the time.  To get on the bus, she would hand the driver one of her crutches so she had a free hand for the railing.  Most drivers easily complied with this, but this one driver refused.

We called  Tri-Met to complain.  They wanted to witness the driver not letting Jodie on the bus.  They stationed a supervisor where the drive could not see him.  The driver refused to let Jodie on the bus.  They tried this again, and the driver refused again.  The third time, with a supervisor visible, the drive still would not allow Jodie on the bus...he was not going to be told what to do.  The fourth time, with a supervisor stationed where Jodie got on the bus and another stationed where Jodie got off the bus, the driver complied, shutting off the bus and making as big of show as he could.

Jodie and I went to a meeting with a special disabled committee with Tri-Met.  Jodie shared what happened...and they did not really care.  We were laughed at.

I was not blogging at the time.  Facebook and Twitter was not around.  I may have written a letter to the paper.  There was not a way to get the story out...and all the avenues we took to get the story out were met with apathy.  The only real comfort we had were other drivers who knew who this driver was did not have good things to say about him.  He was a bad egg.

The story about the lady with a  crying baby getting kicked off the bus is getting the viral social media treatment.  She is getting the attention that Jodie never got.   In the end, however, the driver gets a slap on the hand.

Similar stories, much different public attention.

In the end, the outcome is the same.  The status quo is met.

Saturday, October 08, 2011

Another milestone - a newly licensed driver in the family

For 16 years I have been driving the little guy to daycare at grandma's, or to school. A year ago Eric got his driving permit, so we switched seats in front.

Yesterday morning he took his driving test here in Gresham....8 o'clock...first thing in the morning. His driving tester was named Mary. When he got back, all the other workers in the DMV wanted to know how Eric did. They were surprised..."You got a 95% from Mary?" They said that Mary was the toughest tester in the office.

Eric drove us to McD's for some breakfast, then he dropped me off at work and drove our Sprinter to a friend's house. There can't be too many 16 year-old's out there who drive Sprinters. We are still trying to figure out the vehicle situation. He wants a truck...something about boys and trucks.

Last night I had Eric pick Jodie up at work, then come get me at my office, then we drove and picked up his friend, yes, the girl type, and I drove them to the bowling alley.

Today Eric drove us to the Beaverton Olive Garden for a birthday celebration with my side of the family. On the way home, Jodie wanted to stop to buy Eric some new duds for the homecoming banquet next Saturday. It was nice to be able to tell Eric to drop me off at home and just have him and Jodie go.

Our "Little Guy" is now 6'4". I still can't believe it!

Saturday, October 01, 2011

Telling our story

At back to school night a couple weeks ago, Jodie told Eric's health teacher that she and I would be willing to come and speak to her class about our experiences as people with cerebral palsy, Ann, Eric's health teacher (also basketball coach when he was very young), said that she was doing a unit on brain injury and that a presentation from us would fit in well.

Yesterday, Jodie and I took the day off work to go and speak to Ann's three health classes, including Eric's.

My prior experience doing this kind of thing was when I was in junior high I was asked to speak to my sister's first grade class. I was such a hit that the teacher asked me back for a couple years. Young innocent and honest with their questions...I was able to tell the kids how much like them that I was, how I became disabled, and that I could do most of the things they could do, only differently.

Jodie use to travel for a non-profit group called "Breakthrough" speaking to church groups throughout the U.S. to promote disability awareness. Jodie has a lot of speaking experience and has thought for a long time that she and I could travel and share our story with groups. She is a speaker and I am a of these days it will come together.

Ann wanted us to talk about our cerebral palsy...what it is and what caused it. We know the cause - Jodie was under 2 pounds at birth, and I had the umbilical cord wrapped around my neck, choking oxygen to my brain. It was funny, Jodie and I don't know much about the technical aspects of cerebral palsy, so we were surfing the internet trying to learn more about cerebral palsy.

Jodie talked about her birth, how the doctor was not sure how she would survive her first night. and her early life. I talked about how my grandma, a nurse, could tell that I was not holding my head up right when I was 8 months old, and that shortly after that I was diagnosed as having cerebral palsy.

Jodie shared about the early school days we spent at Holladay Center in Portland, the intense therapy we went through, and the special kind of baseball we use to play.

It was hard to tell what the kids were most interested in hearing about. One boy wanted to know how I could drive.

After the first class, Ann encouraged us to share more about God in our life. Jodie shared about going to her room as a child and praying for God to heal her. Years later she told her pastor. The pastor explained to Jodie the many ways that God had healed her and brought her through life.

I shared about how people have prayed with me for healing, and how I have felt bad for them when I have not been healed by their faith. I shared about how Paul prayed for God to remove his thorn from his flesh, thought to be weak eyesight, but God chose not to. "...for my power is made perfect in weakness."

Anyway, Jodie and I are open to sharing our stories to other groups, kids or adults. You can find more information about us at We are willing to answer any question and we want to do whatever we can to promote disability awareness.