Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.
Thursday, December 30, 2010
Jodie's wheels, like new!
The last straw was a couple weeks ago when Jodie stalled out in the rain a couple blocks from work. I had left early to drive Eric to school for open gym baseball practice. As I blogged a couple weeks ago we took the power chair into the shop. They had to order parts. We kept Jodie's chair at work, since her workspace is all set up for her power chair. We got a manual chair in the meantime to get Jodie to and from work.
The shop called yesterday to let us know the part for her power chair had come in. Eric and I took it in this morning, and returned to get the chair at noon.
They replaced both the left and right motors. They updated something...I don't remember what they said.
Eric drove the power chair to our van and he could not believe how smooth it drove...and twice as fast!
Jodie has not tried it yet, but I am anxious to see how she does. I can see her booking down the sidewalk, getting to work in half the time.
I know it sounds strange, but I kind of look forward to the day when I have my own power chair to book around in...using less energy for my disability so that I have more energy for my abilities.
;)
Wednesday, December 22, 2010
Messing with a big kid...
His regular doctor was not in, so he had a lady doctor attend him. She was tall and she seemed surprised to see a kid that matched her height.
She diagnosed it as a wart.
There are two ways to get rid of wart - the slow, no pain, medicine way, and the short, painful, freezing off way.
Dry ice, wart falling of - it was a n brainer to Eric.
The doctor came back with a cup of smoking dry ice. She had a smile on her face and a "I get to mess with a big kid!" look in her eye.
She dabbed Eric's wart with a swab of dry ice. It was painful...I could tell. Eric grimaced. The doctor said that little kids scream and push her away when she does that to them.
When she was done, she threw the dry ice at the wall...it was gone in a puff of smoke.
Her smile and spirit reminded me of my Aunt Barb who was a great nurse. Hi cousins Tiana and Travis...nice to have contact with you again. Your mom is smiling down on us.
Saturday, December 18, 2010
To whom does the power chair belong?
I unloaded Jodie from the van, we went into the "store front". The gal behind the counter was very nice. She called for a tech. He came out. Jodie transferred to a regular (non-wheel) seat in the waiting area.
The same tech came back out awhile later. They had the power chair up on the rack. From viewing the log from the onboard computer chip he could see that Jodie's chair had indeed been stalling out...a lot! The diagnosis was that the left motor on the chair needs to be replaced.
It will take five to eight business days to get the part. They offered Jodie a loaner chair, but with her experience with the loaner earlier this year, we figured dealing with Jodie's chair is a better option. I will take her to work and to her meetings for now...no busing it or long way ventures for Jodie for awhile.
Another tech brought Jodie's power chair out. The gal behind the counter was on break.
The look on the tech's face was priceless! Like - "OMG! They are both disabled! Whose chair is this?" A deer in the headlights look - totally!
He came towards me with the power chair. I do look like the more disabled one...no doubt.
Jodie said, "Umm, it's my chair."
"Dang!" - I could see it in the tech's eyes.
Jodie and I had a good laugh...
Tuesday, December 14, 2010
Bye Shadow
Make that four.
Shadow, one of Ma2's "Boys", was put down earlier today.
Shadow was a big, old, Lhaso Apso with attitude. A grumpy old man whose growl frightened Vinny, a lab mix four times Shadow's size.
As a pup, Shadow had a near death experience. A nylon stocking in his intestine was the culprit.
Shadow was a cudly dog, Ma2 says. Jodie called him "Teddy Bear". Shadow loved to play, he loved to tip over the small trash can we have by the computer table. We have a plastic container--our bill box--Shadow would take whatever paper he could get out of there and eat it. He even tried to eat the lid!
Jodie called Shadow the "Matriarch" ("patriarch" woman!) because he carried himself in such a kingly manner around all the other dogs in the house.
My favorite memory of Shadow is how he would sit at my feet while I sit at the kitchen table. He would get as close as he could to my feet and lay down. I could never resist reaching down to pet the Big Guy.
Yesterday the vet said that diabetes was getting the best of Shadow. Eleven years old. Pain. No guarantee that extreme measures would even help him.
Ma2 brought him home last night so we could say goodbye. I got choked up this morning as I pet Shadow and said my goodbye.
Shadow is curled up in a much better place now.
Bye Shadow.
Skeeter, Shadow, and me |
Thursday, November 25, 2010
Thanks!
Eric has been to my office, seen the cube where I spend my days...has no desire to see it again. He calls my job "the most boring job in the world!" Policy, data, paperwork...he really is not that far off! Yet, I have been doing the job for over a decade. I am proficient at it. And...I am employed!
I am thankful for that.
Jodie...Woman #1. She works her tail off as an office manager with little thanks or appreciation. This has been her first year in a wheelchair full time. As long as the wheelchair is functioning right for her, this transition has been a big blessing for her as it has reduced pain and strain on her body. Twenty years of marriage!
I am thankful for that.
My son. Eric is 15 and towers over me now. Great student. Awesome pitcher who helped lead his team to state. He has given two sermons at church this year. Jodie and I have always known that Eric was a gift from God to bless this world. Every day that is more apparent.
I am thankful for that.
Family. A job for stepdad John after a twenty month search. Jobs and college for my nieces and nephew. Everyone rallying around SisD with her battle with the Big C...the boys picked up a giant 80 bags of cans donation to support her yesterday. I had an awesome visit with my sister last month, and I have been seeing my mom and have been having great visits on Saturday mornings while Papa John teaches Eric to drive. Life - good stuff and hard stuff mixed together.
I am thankful for that.
Women #1 thru #99...you guys know who you are...keeping me sane or insane. Lunch dates, words of wisdom...keeping me together.
I am thankful for that.
My church family - Resurrection Lutheran. Interim Pastor Craig an Pastor Karl. Faithfully sharing with us words we need to here. Sisters and brothers at church with words of encouragement. News that Pastor Mike has accepted the call to come lead us.
I am thankful for that.
Happy Thanksgiving!
Thursday, November 18, 2010
This is YOUR problem
I use to do that kind of problem solving in my previous duties; not so much now.
I went to a coworker. I kindly told her, "This is YOUR problem to deal with", as I showed her the e-mail outlining the problem.
She shot back, not missing a beat, "That name at the top of that page is YOUR name," pointing to the e-mail. "This is YOUR problem to deal with!"
One of us was schooled.
;)
Wednesday, November 17, 2010
SisD update
She had a good day today. She spent a week in the hospital.
Sores inside her because of an allergic reaction to treatment made her unable to hold food down. She was sent home yesterday continuing to have that problem. She needs another week of treatment before period of rest and then surgery.
It's hard to share stuff when the silver lining is not apparent. The treatments seem to be working. God's strength is carrying SisD and the family through this.
Your continued prayers are coveted and appreciated.
Tuesday, November 16, 2010
Yes Virginia, the season is upon us...
It was a mom wanting to get her three children on the list to get toys from the "Toys for Tot's" program. Someone told her she had to go through DHS to get them on the list. Our office is the closest DHS office to where she lives.
I am the point person for Toys for Tot's in our branch. I basically pester the caseworkers by email to find out who will be responsible for getting the toys delivered to the kids after the toys are delivered to the branch.
Our office is a Child Welfare branch. The toys we get are for foster kids or for kids in families with whom we have involvement. This lady did not fit that criteria, but she did have a foodstamp case. We can't help her at our branch, but I didn't tell her that. I took her information.
I emailed the lady's information to the person who is coordinating Toys for Tots for the district. We're not sure this family meets the criteria that has been set up for the program, but we are finding a way to make it work.
The desperation in the lady's voice kinda got to me. Her kids, foster kids, all kids in need. I know that Christmas is about way more than gifts under the tree. To kids, though, Christmas is about gifts under the tree. Gifts under the tree shows that somebody cares for them.
It does take a village to raise our kids. Kids in need are all of our kids.
This holiday season, amid the hectic pace, amid the joy and celebration, amid the hopes, dreams and possible disappointments, find a way, ever be it so humble, to reach out to the village and help make a miracle happen.
;)
Thursday, November 11, 2010
Sprinter discrimination!
Thursday, November 04, 2010
SisD and the Big C
I hate calling it the "Big C". It seems to give cancer a respect that it does not deserve, when in fact it is a hideous, scary disease.
It has been barely a month since she found out that the sickness that she felt was not just food poisoning. Her whole life has changed.
Chemo, radiation...and upcoming surgery.
Denise is a hairdresser at Salon Ambiance in Gresham. Hairdressers are a tough breed. On their feet all day. Talking with people all day. Counselors who cut and do hair.
The chemo treatment has made it to where Denise cannot work at the moment. The ladies at Salon Ambiance, along with family and friends, are rallying to help Denise get through this tough time.
There is a bottle and can drive to raise funds to help Denise get through this tough time. Bring your bottles and cans:
Saturday, Nov. 6 10am-2pm
Salon Ambiance
192 NE 2nd
Gresham, OR
MAP
You can also donate money at any US Bank branch under "Denise Downey Cancer Fund"
Denise's husband, Ken, walked Jodie down the aisle to me at our wedding 20 years ago. He was a giant of a man. Not just his 6'7" basketball stature, but two weeks after our wedding we learned that Ken had a brain tumor. He fought it with grace for over four years. Their son, Vance, was two when his dad passed in December 1994.
Vance is now 18. Tough deal, real tough deal.
Doctors are optimistic that this battle will be won...but the battle is real and it must be fought.
Donate cans, bottles, or money if you feel you can.
Even more important though, I ask you to pray for Denise:
-release from pain
-remission from cancer
-financial needs met
-a place to stay that does not have stairs
-strength and grace for Denise and her son Vance
Thank you!
Sunday, October 17, 2010
Johnnie is "too disabled" to fly
Occasionally I find myself in a situation around people who don't know who I am or what I'm about. I get the looks - "why is he driving that bus...he can't hardly sign the receipt!" And, many people assume that since I have cerebral palsy that I must also have a mental disability as well.
We all judge each other...it is human nature. Usually these judgement are in the form of a stare, or a comment.
To get kicked off a plane because of these kind of judgments...
I hope Johnnie's career soars with all this publicity...and I hope the airline has a wonderful opportunity to learn an important lesson.
;)
Thursday, October 14, 2010
Temper @ Terrible Palsy
Master C then asked me why Moo has cerebral palsy? He told me that he gets asked all the time at school.
“They shouldn’t be asking you,” Moo said. “They should be asking me.”
Sometimes it astounds me how grown up that little boy is. I asked Moo what he would say if he was asked that question.
He thought about it for a couple of seconds before replying, “Because.”
No. No other reason that just because.
Wednesday, October 13, 2010
I can't say "Thank you" enough!
After work I went to load my scooter into our Sprinter van. I let the lift down, backed my scooter on, then I pressed the "up" button. Hydraulic fluid started spraying out...not a good sign!
The lift would not go up...the more I tried, the more I was sprayed with hydraulic fluid. Shannon was moving the state cars around for the parking lot re-striping. She went and got Russ. Brian, David and Vicky came out. Connie offered to drive me home.
David called Triple A. They don't provide towing for Sprinters...Jodie is going to call tomorrow. Why keep paying them if they can't tow us?
I tried to pump the lift up manually, but that requires there to be hydraulic fluid..something I did not know. We got the instructions for the lift out of the glove box. There wasn't any other way to get the lift up.
I was worried about how late I would be hanging out waiting for help. 122nd & Powell...not the safest area at night.
Jodie was able to call the after hours emergency number of Performance Mobility. A technician named Gene was only ten minutes away, cruising down 122nd. In less than ten minutes Gene was there on his black motorcycle.
To get the lift up, Gene needed a couple strong guys. Shannon went and got Russ and Ryan. She also grabbed a cooler. Gene carefully explained that they would need the lift the lift, slide the cooler under it to hold it off the ground a ways, get under the lift and lift it the rest of the way up. When the lift was all the way up, they would need to push it upright into the van and not let go...it could pop back out with great force. Gene closed the door.
I need to get the van into the shop ASAP. I'll be doing that after my dental appointment in the morning. Sounds like it could take a week to get the parts in. We might need to rent a van from them...not quite sure how all that is going to work out...
Thank you Vicky for wiping up the hydraulic fluid in the van...what a mess that was!
Incredible help from a incredible cast...Thank you!
Wednesday, September 15, 2010
122nd & Halsey
Tuesday, September 14, 2010
Back to work...
We took Eric to the Columbia Gorge Interpretive Center Museum. Only $7 to get in, lots of artifacts and historic photos. I loved the old logging truck - it still runs and is used in parades. We drove down to Hood River and watched the wind boarders...that was cool!
Jodie and I went down to Lincoln City for the night to celebrate our 20th anniversary. We had a nice, accessible room at Ashley Suites. We parked by the beach. The highlight was Chinook Winds. I was sitting by this one lady who kind of reminded me of Grandma D. She was coaching me on what do do on the penny slot...as if I don't know how to lose money myself! I got done to zero, and she put one of her bucks in. I quickly turned that into five!
For me, the magic of the casino is watching the people. All ages, all walks of life...all there to win big. We are all different in how we look and act...but we are all the same in what we want. We all want security, and we see a shot of financial security.
Jodie and I each won a small pot of security. I played mine down to zero...we had two ribeye dinners on Jodie's at the wonderful restaurant upstairs at Chinook Winds. Yes, I know who the smart one of this duo is...
During vacation, we took in the state fair. We have been going every year since getting our scooters nine years ago. Mom and John met us there this year. Jodie, I and Eric only had to pay for one this year...almost as good of deal as last year when a worker called us through the side gate. It happened to be on one of the few hot days we have had this summer. Great onion rings, cool 3-d art...fun watching the farm kids trying to keep their goats quiet while they were being judged. We found our favorite backpack vendor and got one for Eric for school.
I know...not hugely interesting. But two weeks off work...priceless!
Wednesday, September 08, 2010
Twenty years, Woman, twenty years...
Tuesday, September 07, 2010
Trying to get a disabled bus pass
We are on vacation this week. We took the lightrail downtown to the main Tri-Met office to turn in the application. It was not accepted. No photocopies, has to be original.. Jodie is in her power chair and has ID. No go.
She did not argue. Rules is rules. We are state workers; we understand.
But man!
Saturday, September 04, 2010
God not needed for creation?
“Because there is a law such as gravity, the Universe can and will create itself from nothing,” the excerpt says. “Spontaneous creation is the reason there is something rather than nothing, why the Universe exists, why we exist. It is not necessary to invoke God to ... set the Universe going.”
Friday, September 03, 2010
The lift...It still not working right!
On Wednesday I took our Sprinter into the shop. We have had the van for three years and have dealt with a hanging ceiling panel...a missing snap. Hard to explain...easier to show. One missing snap has turned into six...the ceiling is falling! My cousin Kevin is the shop manager...I showed him what was happening...he ordered some new snaps to fix it.
Jodie has had her power chair since December. We have had trouble with the lift stalling when we are lifting Jodie into the van. The lift was geared for us to back on to be lifted; Jodie has been coming front first to be loaded...and, duh, not working to well. Jodie, Eric and I were at the lift shop for a couple hours yesterday for a tuneup and to fix it so we could front load.
It worked at the shop...of course.
We made some stops on the way home...the lift stalled each time on us. We had to hand crank it.
We stopped at Cathedral Park on the way home...very beautiful place!
When we got home, we tried something. We pushed my scooter closer to the backseat, put my walker on my scooter, then had Jodie turn her chair around in the van. It was tight, but it seemed to work. Jodie transfers from her chair to the seat in the van.
Today we are going to see if Jodie can just back in and then walk around her chair.
Trial and error...always!
Friday, August 13, 2010
Lens of faith - God is real!
I've been a follower of Jesus for 30 years now. I pray...not nearly enough...but I try.
A concerning situation was facing people close to me yesterday. I can't get into it here. We prayed. Support arose from the woodwork, and a potentially bad situation was averted.
I have seen God act before, but, I confess, my faith grows stale and I forget the realness of God.
Once I was driving home to Oregon to visit family. I was working at World Christian magazine in Pasadena. I got a flat in Redding, CA. I had a "I need help" sign in the trunk. I held it for a minute. A guy stopped, took my tire into town, had it fixed. There was not time to worry. I was taken care of.
God is real.
Another time I was driving home from Spokane. My radiator blew in the gorge. Two truckers stopped. One hiked down to the river for water. They shored my radiator up enough for me to get home. Angels on the highway...I know they are.
God is real.
My thought turns to the calling of a new pastor at my church. The above situation has nothing to do with that. We have been without a permanent lead pastor since June of last year. We finally found a candidate - Pastor Hoyme. Yesterday we got word that the Spirit led him to not take the call.
Some might see it a a blow to the church I suppose. Over a year looking for a new pastor. I see it as a time to reflect on who we are as part of the body of Christ. We have been looking for someone to "lead the flock". We do need a person as pastor who has leadership skills to guide us as a flock, but we need to open our eyes of faith and realize the grace that is upon us.
We have a leader - Jesus. He has graced us with Interim Pastor Craig and Associate Pastor Karl. They have done a wonderful job co-shepherding us. The commitment of Craig to serve us, spending so much time away from his Redmond home...and his motorcycle. The energy of Karl, leading the youth, and, in this past year, filling in so many needs around the church. Have you seen the visitation scheduling board in his office?
Yes, we continue to look for a lead pastor, but let us do so with thoughts of humility. What do we as individuals, and as a corporate body, have to offer a new pastor, a new partner in the ministry?
Look at the prayer drop box we have in front of the church:
We have been praying as a congregation for the the requests that have been put into this box. Broken people with needs. Broken people, just like us, with needs.
For the new pastor we are looking for, let's realize they are broken people too. Let's welcome them to our side to serve and to be served.
Let's continue to pray. Let's continue to look up. Let's continue to serve. Let's expect great things.
Sunday, August 08, 2010
My old college digs
Varsity House - We were brothers...Sudbeck and Sandage...Sam and I still have lunch...Roland Johnson is around town somewhere...Mike Blok married Karen, the Griz's sister, and he teaches science at my old high school (Beaverton)...house mom, Maxine...I miss her and her homemade maple bars...and the Griz, my first roommate - I had the dish hose in my hand...he dared me to shoot him...I nailed him! Ten minutes later, I opened the door to our room...a bucket of water was on my head!
The Mansion - $85 per month, owned by dear old Mrs. Parks at First B....Jeff - I won't tell a sole about the green peaches that were in the fridge when I first got there...or the half gallon boxes of ice cream we use to chop in half and devour...I remember Dave on the drums, coming home one day and Dave and Troy (T2) playing 25 to 6 to 4...heard it clear down the street! I remember the great spaghetti we use to throw together...I remember Sunshine laughing hard at my cooking technique - exploding hot dogs in the microwave...I remember the three bats flying around the living room, my frantic call to Tom, and the hysterical laughter at the other end of the line. The three pained window, that was my room at the end of my college days. Best room in the house...large...wood floor...built-in dresser...walk-in closet. I lived as a king!
Jodie's return to orthopedist
This time the doctor's office had our referral, so they were able to take x-rays.
The good news is that nothing is broke in her foot or ankle.
The concern is that the top of Jodie's foot is very tender and painful to the touch, which is odd even more because of her limited feeling down there. The dr. is worried about possible nerve damage. I never realized the havoc that can cause, but I guess it can. She wanted Jodie to take a pill to reduce the pain. Jodie preferred to wait...not wanting to take another pill.
The dr. warned Jodie to let her know if the pain increases.
Yes Dr.
We go back in a couple weeks.
Monday, August 02, 2010
Congratulations Scott!
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!
Saturday, July 17, 2010
Thursday, July 15, 2010
Jodie's doc visit
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
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 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?
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
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!
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
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
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
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!"
Monday, May 31, 2010
Trusty GPS and Google maps?
Friday, May 21, 2010
We are as we Google
Google Trends: May 21, 2010
Friday, May 14, 2010
Goodbye 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.
Thursday, May 13, 2010
Tuesday, May 11, 2010
Sunday, May 09, 2010
"Temple Grandin"...Must see!
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.
Friday, May 07, 2010
Thursday, May 06, 2010
Country Starlet comes out
Sunday, May 02, 2010
Slake?
There are many places for spirit food on the web. Pastor Karl's evo's is one of my favs.
e-vos: e-vo for week of April 28
When we love we slake thirst and sate hunger and fill voids.
God use us as agents of your love in this troubled world. Amen.
Thursday, April 29, 2010
Tell TROUBLE...
When I was done, I told her to tell TROUBLE "hi" for me.
She wrote back something like "I think you are being tongue and cheek. She is a good friend of mine, but she can be a pain sometimes."
I wrote back "Total T&C! She is a dear."
Made me think of our human condition - the better the friend, the bigger the pain in the butt...at times.
...and, be careful with the T&C!
Tuesday, April 27, 2010
Too much commonsense
Why does such obvious commonsense elude us so much?
The world's problems would be solved if we all and just thought things through and talked.
"I'd always thought that if I am going to teach a class about a group of people that I should have a member of that group teaching it with me," she said. "It's really about having representation of a minority group that doesn't get heard or seen very much."
Man with cerebral palsy helps teach special-ed course - The Denver Post
Saturday, April 24, 2010
To my "Jan's Clan" family
Hey guys...
This is Troy...web wiz behind the the Jansclan website.
Jansclan is built on the "ning" social web platform. That's as technical as I am going to get...see...that was painless!
The company behind "ning" is not making enough $$ off the cheezzy ads on the side, so next month they want to begin charging a monthly fee. $4.95/month I think.
Not many of us are using the site any more.
My suggestion is that we let the ning site die, and that we start a Facebook group for jansclan. Most of us are on Facebook now...even the geezers among us.
The biggest loss I see are the 660 photos. Facebook has a 60 photo per album limit. I cannot seem to find if there is a limit on the number of albums.
Can we start over with a Facebook group page?
Friday, April 23, 2010
"Ah...the Petke boys!"
Tim Petke was a pitcher in the Angels organization. He is giving personal lessons now. His website is pitchwithtim.com.
Wednesday night I took Eric over to Portland Lutheran HS to meet Tim. Mike, Tim's brother, is a science teacher there.
I think Tim wasn't looking for a 6'1" kid to be the 14 year old he was going to meet. Mike thought Eric was a sophomore. He played catcher as Tim instructed Eric, and his hands were stinging from Eric's fastballs. Tim was impressed with what Eric knew, and his eagerness to learn.
As we were leaving, an older coach saw Tim and Mike..."Ah...the Petke boys!"
I imagined Tim and Mike way back when burning up the baseball fields, or raising heck at school.
Probably a little of both.
;)
Thursday, April 22, 2010
Watching Eric's game from afar...
Jodie and I have more accessibility challenges than last time we were there.
Jodie is in a power chair now...not quite full time, but close. I am using my scooter more. Needless to say, we did not crawl through the fence to get to the field this time. We were sitting outside the fence, kind of in someone's side yard. We would have moved if we were asked, or submitted to police if arrested. We were about 50 ft or more from the game.
Jodie was yelling her fool head off for all the kids on our team, as she always does. She was also testing the new leg lifting and reclining features that were added to her chair today.
We had to go over some uneven, soft ground to get to our viewing perch.
I headed for the van when the game was over. Jodie was stuck; she waited for Eric to help her.
Cars were parked in all different angles on this narrow road...getting to the van was a trick! I got to the van and there was a truck parked too close to the back; not enough room to let down the lift. A mom from the other team went to find out whose truck it was.
Turned out it was Byron's, Tucker's dad. Tucker is a classmate of Eric's. Byron came and backed the truck up, then he ran the lift and helped me get my scooter in the van.
Eric was having trouble pushing Jodie over the soft ground. Byron started to help push. It was a Rockwell moment: Byron got Jodie's chair going, Jodie's legs were bouncing up in the air. She went faster and faster, with Byron hanging on to the back of her chair, with his legs flying as they tried to keep up!
Jodie and I try not to make other people deal with our disability. It's our cross and we try to bear it with grace.
But more times than not, God laughs at our stubborn independence and makes us see that we are part of His cast of characters, an d not the other way around.
God does not make hard stuff go away. My cross is your cross, your cross is my cross.
We are God's cast of characters.
Wednesday, April 21, 2010
Tuesday, April 20, 2010
Monday, April 19, 2010
I could see myself using this technology someday
Microsoft's Skinput turns hands, arms into buttons - CNN.com
Saturday, April 17, 2010
Accessible golf
Jack Nicklaus helping veteran golfers with disabilities | Standard-Examiner – Ogden, Layton, Brigham, Weber, Davis, Top of Utah News
Friday, April 16, 2010
Christian singer outs herself
Jennifer has a new album coming out May 11, "Letting Go". I am not familiar with her music, but I just listened to her song "A Little More" on zune. I like her sound, and I look forward to her album.
I'd like to think that christian radio would pick her music up, but she does not think it will happen.
I admire her openness and candor.
She will be in Portland on April 27 at the Aladdin.
Is our Christian tent big enough for Jennifer? In my mind, it is.
Jennifer Knapp Comes Out | Music | Christianity Today: "So why come out of the closet, so to speak?
Knapp: I'm in no way capable of leading a charge for some kind of activist movement. I'm just a normal human being who's dealing with normal everyday life scenarios. As a Christian, I'm doing that as best as I can. The heartbreaking thing to me is that we're all hopelessly deceived if we don't think that there are people within our churches, within our communities, who want to hold on to the person they love, whatever sex that may be, and hold on to their faith. It's a hard notion. It will be a struggle for those who are in a spot that they have to choose between one or the other. The struggle I've been through—and I don't know if I will ever be fully out of it—is feeling like I have to justify my faith or the decisions that I've made to choose to love who I choose to love."
Amanda Knox...what do you think?
Are the prosecutors on an unbridled vendetta here?
I just don't know.
What do you think?
Amanda Knox Prosecutors Now Want Life Sentence - ABC News: "The Italian prosecutors who sent American college student Amanda Knox to prison for 26 years filed an appeal of the case today, asking the court for a tougher sentence."
Thursday, April 15, 2010
Accentuate the positive
I'm a huge fan of this site. It's too easy to think of the negatives...we forget the positives.
The Book of Awesome. I need to get that.
#526 When dreams come true « 1000 Awesome Things
Tuesday, April 13, 2010
Prayers for Poland...
Face Of The Day - The Daily Dish | By Andrew Sullivan
Monday, April 12, 2010
We want a number ten!
We found Jack in the Box on our Garmin and headed there.
We went through the drive through. I shut our diesel rig off to give the order taker a better chance to hear Jodie giving our order from the passenger side. We each picked a combo number to keep it simple.
The gal got Jodie's order easy enough, but she could not seem to get mine. "We want a number ten!" Jodie said over and over. The number ten we saw on the menu was a sourdough chicken combo. It sounded like the gal was repeating "number ten", but then listing a bunch of stuff that was different from the number ten I was seeing.
I finally told Jodie, "You know what? I will eat it...whatever it is, I will eat it."
Curly fries, double bacon cheeseburger, deep fried mozarilla sticks, jalipanos and two egg rolls...
Enough fat to bring down the Titanic!
Sunday, April 11, 2010
Date Night
We went in. Jodie was in her power chair, I had my walker, so we sat down front. Brad and Lori were not in there.. A guy came in and was looking around. I thought it was Brad.
"Hey Brad!" I said. It was Brad, but it was Eric's former band teacher. Weird moment!
I went out to the lobby. Brad was there looking for us. They were watching the same movie in the theater next to ours. I'm sure they were in the right one for the time we had set.
it was a good movie, but not as great as we had expected from the comedic duo of Fey and Carroll. The best comedy was subtle, when they weren't trying so hard. Good chemistry there.
We went to Old Chicago afterwards. It was a fun evening.
And no, we did not take someone else's reservation...;)
Friday, April 09, 2010
Monday, April 05, 2010
We can!
Yes, we can:
Seth's Blog: Accepting limits
And isn't it even worse to write off a person or an organization merely because of what they are instead of what they might become?
Sunday, April 04, 2010
Easter thoughts from Googlinggod...
Saturday, April 03, 2010
Journeys, goals and miracles
Sunday, March 28, 2010
Get your palm branches up!
Sunday, March 21, 2010
Cell phone shopping
He and I went shopping at T-Moble..
I wanted to stay away from the smart phones; our cell phone bill is high enough. Just to know, I asked the salesman how much the internet charge per month on the smart phone was. $25...too much.
Eric started looking at the non smart phones. Some of them seemed pretty inteternet ready. Eric found a T-Moble Tap. We asked the salesman if it did email and internet. Yes, for $10 per month. Why $10 and not $25? Well, the internet is lower quality, more text like.
I felt like they were trying to get me to buy a smart phone rather than the cheaper option.
Eric scored.
Now guess who wants what Eric has?
Saturday, March 20, 2010
Chess - more than just a game
Thursday, March 18, 2010
A staggering number..
Friday, March 12, 2010
Faith in no faith is faith...
Wednesday, March 10, 2010
World's richest dude...
Carlos Slim 'World's Richest' Person: Forbes Says Mexican Billionaire Is Richer Than Bill Gates: "Slim's conglomerate of retail, telecom, manufacturing and construction companies so dominate the Mexican commercial landscape it is often easy for Mexicans to find themselves talking over a Slim-operated cell phone at a Slim-owned shopping center waiting to pay a bill to a Slim-owned company at a Slim-owned bank. If the line is too long, they can catch a quick coffee at a Slim-owned restaurant."