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

Thursday, January 26, 2012

Thank you bud!

We were up at the hospital today.  We feared that a "funny feeling" Ma2 had could have been a bad thing.  Everything turned out fine.  We all went to her house afterward to rejoice.  We shared the birthday cake that she made yesterday.  Life's little scares have a way of redirecting our attention to the important stuff.

I didn't know if I was going to be able to leave the hospital.   I got myself stuck.

When Jodie and I got to the hospital, I dropped Jodie off by the front door.  I went to look for a disabled parking spot.  There was none available in that lot.  I  saw a car pull out of a regular parking spot, so I pulled our oversized van into that spot.  The thought crossed my mind that pulling out was not going to be fun.

When it came to leave, I climbed the hill with my walker.  I got some funny looks.  It was a pretty steep hill.  I put my walker in the van.

I backed out, then pulled up over to the left.  I needed room on the right to swing out.  I have a backup camera, but I have trouble telling how close the back corner of the van is to the cars in back when I am trying to turn out.

This guy was waiting for my spot.  I kept pulling forward and back to try to give myself enough room to swing out.  The guy waiting for my spot gave up and drove on.  He came back around and figured  out what I was doing.  I looked at him and he started to give me hand motions to show me how far I could back up.

Now, I know the guy helped me because  he wanted my parking spot, but he really saved my bacon.

Thank you bud!

Wednesday, January 25, 2012

Lawsuit challenges sheltered workshops for Oregon's disabled | Reuters

I heard this story at lunchtime on the radio and I was intrigued:

Lawsuit challenges sheltered workshops for Oregon's disabled | Reuters

After my college days at Oregon State University, where I worked on the student paper as a columnist (Witticisms...imagine that!) and a copy editor, I worked six months as an assistant editor for World Christian magazine, I had to move back home to look for a real that paid.

For a year I sent out resumes. Zero response. I want to a job seekers class through the Hillsboro Chamber of commerce. I had a vocational rehabilitation counselor named Art. He was an awesome guy. He tried lots of stuff to help get my foot in the door. Truth was. I was hard to market.

Truth is, I am hard to market. My cerebral palsy affects the way I walk and the way I talk. Getting a job depends heavily on your book cover appeal.

It was not until I met a couple visionaries who looked past my disability to give me a shot at proving my ability. Don Bougher ran the state volunteer program in Hillsboro. He had an Apple computer sitting on the floor in his office. He did not know what to do with it. He asked if I could write a spreadsheet in Lotus 1-2-3 to track volunteer hours. I volunteered and created the spreadsheet. Don was a visionary; he saw something in me and gave me a shot to prove my ability.

When I was going to move to California to pursue what looked like better job training possibilities, Don spoke with Gary, the child welfare branch manager. He told Gary the only reason I was moving to California was to look for a job. The next day Gary offered me a temp clerical job. Gary was a visionary. That was over 22 years ago. I work as an eligibility specialist now.

I think about the sheltered workshops. I never worked in one, but it seems like I easily could have ended up in one. I was intrigued by the example at the end of the article, 23 year old Eleanor who got a job at a grocery story after a "strong advocate" helped her get out of a sheltered workshop.

It takes visionaries - disabled who have the vision to believe in themselves when few people do, employers who can see past disabilities to see abilities, and advocates who can help both sides to vision the possibility - to make a successful job match happen.

Whether a lawsuit can make all this happen, it will be interesting to see.

Tuesday, January 24, 2012

A birthday card and a givers heart

We usually fail to honor people when we ought.  We wait until they are gone and kind words are the order of the day.

Tonight we were honoring the 20th birthday of our dear niece Manda Jo.  I remember seeing sis-in-law Pam over at Portland Adventist hospital as if it was yesterday...but I digress.

We were gathered around the table at Old Spaghetti Factory.  Pam and Logan were lighting the 20 candles and trying not to set the place on fire.

My mother-in-law (Ma2) started to hand us each a card.  She was watching me as I opened mine.  A piece of paper, nice cat and dog stationary, was secured inside.  It read:

"My seventy-seventh birthday card to you -
I thank God every day for giving me you as my son-in-law.  I am very proud of you and honored that God chose me to be your favorite mother-in-law.  Love ya lots, Pat."

As I contemplate her kind words, I realize that her own words reflect the kind of person she is, always giving and preferring not to be recognized.  Who hands out birthday cards on her own birthday?  My dear mother-in-law does.

Her goodness has made and continues to make this world a better place for so many  people.  Her words reveal the kindness of  her heart.

Tomorrow is her birthday.  I won't say how old she'll be...just wouldn't be appropriate.

Happy birthday Ma2...much love from your favorite son-in-law.


Monday, January 16, 2012

The Wonderful World of a Former Hoochie Mama

Awesome title for a blog:

The Wonderful World of a Former Hoochie Mama

For some of us life is one idyllic episode after another. Perfect spouse, perfect kids, perfect job...

For other's of us, life is not quite so perfect. We need to open our eyes and, with God's grace, search for the perfection in our life. For people like Former Hoochie Mama (Mel) and myself, we need to write about our life to bring the perfections in our life to light.
I am a born again Christian, and I struggle daily to be a decent person. Many people think you have to be perfect to call yourself a Christian - fact is there was only ONE decent and worthy person of being a Christian and His name is Jesus. The rest of us need only to try to be Christ like with his love, mercy and grace.

I am FAR from a perfect Christian, but I am a perfect example of His love, mercy and grace. I will NOT preach to you or at you - I will simply try to display HIS love through my actions and life as much as I can. I will also fail at this at times and I ask for your forgiveness before hand. :)
Please add to your list of must reads!

Sunday, January 15, 2012

A "No" to transplant because of cognitive disability?

Yesterday I blogged about the ridiculousness of questioning whether a person with a cognitive disability has the ability to understand and accept God's love.

Today I came across an article about young Mia, who needs a kidney transplant to live.  The problem is that the doctor would not recommend Mia for a transplant because of her cognitive disability.

Mia's mom, Chrissy, writes:
"I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.
A bit of hope. I sit up and get excited.
“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”
“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing."
Please read her post by clicking here.

Takes me back to sixth grade values that what we called it?  You know, 12 people need to be saved and the rubber raft holds six.  I always figured I would not be one of the six who would saved.  I never understood the value of this exercise except to make me feel like junk.

Little Mia...a life not worth saving?  Doctors playing God?

It makes me feel uneasy..

Saturday, January 14, 2012

Does God's love depend on cognitive ability?

This is an interesting yet ridiculous debate:

Is the Gospel 'Closed' to the Mentally Disabled?, Christian News

The notion that God's love is only available to people who can hear and cognitively process God's love in a prescribed way really bothers me.

Who of us has perfect enough thinking to fully understand God's love? Jesus welcomed the children to Himself and said that we too should

If God's love depended on cognitve ability, space cadets like me would not stand a chance!

If we are going to say that God's love is only for those with perfect understanding, then we are serving a god who is in our mind. No need for God the Father who is in heaven, Jesus His son, and His Spirit within and among us.

Troy...step away from the soap box!


Friday, January 13, 2012

You know you are getting old when...

I have had issues with dry, itchy skin for awhile, but lately it has gotten out of control.

Yesterday I visited a dermatologist for the first time. I smiled when I saw a basket of mini candy bars at the reception window. "A way to encourage repeat business," I wondered.

I was thoroughly visit was long overdue.

"You know," the doc said, "you will have to deal with this for the rest of your life."

My mortality flashed before me. "The rest of your life." Yes, I will turn 48 soon, and yes, I am not as flexible and pain free as I use to be, but to hear the doctor say that drilled it home to me: I am getting old!

Tuesday, January 10, 2012

Holladay Center alumn

Part way down on the left side of this blog I have a section called "Calling all Holladay Center alum".

Response has be quite underwhelming. It has been up for three years and I have gotten three responses. Now that there is a Holladay Center page on Facebook, my attempt to gather the names of alumn is pretty much useless. Even so, when an alum fills out my Google form and I get the notification by email, it is a bit like Christmas to read their story.

The other day was Christmas. Jerry Pattee went to Holladay Center from 1958-1964. When I responded to Jerry I could not help but note "1964...that is the year I was born!"

Jerry had the same doctor I had, Dr. Cottrell. He has been a volunteer with United Cerebral Palsy for 26 years. He had a 30 year career with Quest Communications. I am impressed because I would guess Jerry has 10 years or more on me. My road to getting employment was not easy. His must of been challenging as well.

Jerry said in an email to me that it is always good to know an older person with cerebral palsy. Our disability does not worsen, but as we age, the way our changing (aging?) bodies respond to our cp changes. Jodie and I are dealing with some of this right now.

We plan to meet with Jerry sometime in the near future. Jodie and I push so hard during the work week that on the weekends we relish our veg time. Jodie and I want to try to put ourselves out there to make valuable connections.


Thursday, January 05, 2012

...You need to share it

Yesterday at work a caseworker/friend of mine came over to where I sit doing my nerdy eligibility stuff.  I told him about my new baby, and the desire Jodie and I have to share our story with others.  As I explained our message of overcoming barriers and never giving up, he seemed a little off guard by what I said.

I chalked it off to my uncanny ability of talking too much and annoying people.

Imagine my surprise when that same worker came over, sat on my walker, and told me "You do have a message and you need to share it."

Turns out he had a sister who had very severe cerebral palsy, who was hospitalized at age three and passed away at age six.  After all these years he still had some raw emotion over this.

I hurt for his pain.  I was thankful he shared this part of his life with me.

It also made me thankful for the life Jodie and I have.  The smallest change of circumstances could have made the life we have together impossible.  Without the love and support of family and friends, we would not be where we are.

We all have abilities; we all have disabilities.  It's about focusing on what we can do rather than what we can't.

Yes, we have a message to share.

Wednesday, January 04, 2012

Observations of the day

A resolution I have for this year is to blog more.  I feel I dropped the ball last year by not blogging much.

It's easy to blog when life is moving fast and a lot is happening.  When life is mundane, not much happening, blogging is difficult.  There did not seem to be much that  happened last year, so I did not blog much.

This is a bad excuse for me.  As a writer, I am a life observer who should be able to take the most boring of days and turn it into fine art with the right words.

Today was Jodie's first day back to work after two and a half weeks off.  I went back to work today after five days off.  This morning, Jodie and I were getting ready to leave for work, and Eric was getting ready to leave for school.  Before we left, Eric gave Jodie a hug and then gave me a hug.  With a 6''5" teen, that does not happen everyday.  A wave of joy came over me considering what a great kid we have.

The news of the day is that Romney won the Iowa caucus by eight votes.  It makes me laugh  to hear the big deal people are making over that.  I like to follow politics. I am a moderate...a moderate what I am less and less sure.   I really am  not sure which party contains the majority of my ideas anymore.  Both sides seem more interested in self promotion rather than getting the right things done for the people.

Jodie sent me a message toward the end of the workday that she wanted to go to the midweek church service tonight.  Eric was going because the youth we having a white elephant exchange with the youth afterward  I was surprised  to see the Christmas decor still up in the sanctuary.  Pastor reminded us that Epiphany is Friday, and intern Ray shared more with us about what Christmas means to us.   Jodie and I are hoping to make the midweek service a habit.

I will try to be more observant this year, and will put more effort in making this blog more interesting for you.

Tuesday, January 03, 2012

Making the world a better place

Jodie is a speaker and I am the writer.  Jodie and I have known that from the beginning.  You can tell that from the video we just posted here on this blog.

Video blogging is kind of weird.  Staring into my netbook's eye and talking.  No contact with the audience, no questions to answer - so one dimensional.

When I was in junior high, I was asked to speak to my sister's first grade class.  I can't begin to tell you how empowering that was to me.  These little guys, who perhaps would of laughed at me had they first seen me outside the classroom, we listening to my story and beginning to understand me.

Four or five years later I saw a young boy as I was riding my big yellow trike through the elementary school grounds.  He said, "Hi, remember me?  You spoke to my first grade class."  I was use to kids teasing me.  I would do what I could to avoid  kids because of this.

This little guy empowered me by showing me respect.  I was even more struck by the thought that my speaking to a first grade class years ago produced a boy who probably not be so quick to judge people because of the way they looked.  Seeds of what I said helped make this world a better place.

Making the world a better place - that is why Jodie and I want to do public speaking.

Please look at our new website,,  How many people do you know who have their last name as a domain name?  Kind of geeky I would say...

Read our story.  Maybe you are in a group at church, at work, or in an organization who could benefit from our message.  Maybe your child has a class that needs to hear our message - that people who are different are okay.

Making this world a better place...

Jodie and Troy video - public speaking