Sunday, December 30, 2018

Final Post of 2018

This post is number 53 for the year and the last one for 2018. I don't get into new year resolutions, so I can't say I have any upcoming plans on changes.

In 2018, I was able to read through the entire Bible twice again and also read the New Testament an extra time. I'm debating on what to do for reading plans next year, but hope to increase my time of study of God's Word.

For the last month of advent season, I have heard sermons from various churches through different sources. Unfortunately, not all of them were based on Scripture and used video resources or songs as the message topic. I did come across a channel on YouTube that has material I could see using as future sermons of my own.

As I currently sit, I don't expect that 2019 will have much, if any, for trips happening. The two this year were a challenge and as time passes, they won't get easier.

I am praying that my nursing coverage will improve in the new year. I'm very grateful for all the hours I have covered and all that God has allowed me to do. This year had 35 shifts, day and night, that were not covered. I'm also very uncomfortable with one of my current providers, but she at least comes and allows my parents to sleep.

My primary night nurse is now starting college classes part-time and will be moving on to another career. That will mean four nights a week that will need to be covered when it's already a struggle.

Whatever comes in the next year, I can be assured that God is in control. This has been a year of ups and downs in this quad life and that will always continue. Thankfully, the infection I had last week seems to be clearing up and with only another day remaining for medication, everything has worked well.

Have a very blessed 2019 readers. Thank you for coming along with me in this journey and whatever comes next!

Sunday, December 23, 2018

Good News Infection

This has been one of the weeks of unexpected times. Some have been good and others not so much.

On Tuesday, my nursing agency's supervisor came for her regular 60-day re-certification check. Part of her routine is checking my skin and tracking progress of wounds. I was thankful to hear that all three are smaller than the last visit. It's nice to verify that all the flat time is beneficial.

For the last few weeks, I have been noticing a foul stench coming from my lungs (not my breath). I thought it was time to get checked out before Christmas and saw my doctor Wednesday. He put me on a general antibiotic until test results returned. The one he chose is one that I've reacted to in the past, but thankfully I haven't had any problems. If this blog goes silent for a few weeks, then I would guess trouble came later.

Results came back Friday with infection of MRSA around my trach button. He stopped the original med and started me on another for ten days. This is starting to remind me of the scenario from September. I'm praying that I'll skip the hospital stay this time and just finish everything as scheduled.

This wasn't the plan I had for the week leading to Christmas, but I'm thankful for the news of improvement and for help for problematic bodies. I'm most thankful though for the gift of the child in the manger.

Comparing this quad life to God's moral law, I know that I don't deserve the many blessings I have been given. Thankfully for me, and everyone who believes in Him, God sent His son as a child to earth. Through His sacrifice and conquering of death, we may have the free gift of salvation.

It is increasingly rare anymore to hear "Merry Christmas" and the true meaning of Christmas. We need to be careful this week to take time to remember Jesus' birth and that everyone needs to truly repent of sins and take the gift we've been given.

Merry Christmas!

Sunday, December 16, 2018

Looking Back

I like getting notes at Christmas with updates on what my friends and family have done throughout the year. Now that most people use social media to connect nearly every minute of the day, letters are pretty rare.

Around 2007, I started doing my own annual review and then send it out by email and make it available on Facebook. So I guess I do a hybrid of sending out letters and updating online. I spent a few days this past week getting this year's reflection complete and sent out.

Paying web development work has decreased again this year so that I'm now down to only two regular active clients. Half of them are volunteer, so I only end up officially working a little over an hour per month.

However, in 2018 I have preached eight times, spoke at five grade schools, six college classes, and the Iowa Lung Conference. Where one form of work is decreasing, another is increasing. I did not plan it that way, but I trust God's leading in every aspect.

Also this year, I was able to make two trips, one to camp and another to the Louisville, KY area. My pressure sore didn't do well with the increased activity, but at least I could go and enjoy these times. The sores are improving, so they at least weren't brought to the point of no return.

This year I also saw the passing of other quads, a camper graduate, and several in the hospital with serious problems. I'm thankful to have had only one hospital stay this calendar year and to have pretty good health (at least for a guy who isn't breathing).

It has been a year of blessings, along with a few frustrations. The last few weeks of the year can get pretty hectic with Christmas and New Year celebrations, but I'm looking forward to them and what may be ahead. I never quite know what to expect living the quad life, but it's rarely boring at least. With just over a week to Christmas, I look forward to final preparations ahead.

Sunday, December 9, 2018

Home Therapy

This week will mark one year since I started doing FES (Functional Electrical Stimulation) bike therapy at home. I did it for over two years in Des Moines before getting it here and am thankful for the access.

After I complete a bike session, it uploads to a database and records my activity. I get an email report every week as well saying what my stats were. Some activity doesn't get recorded due to internet errors, but most of them get recorded.

My very first time on the bike was July 13, 2015. Since then, I have done over 184 rides for more than 550 miles. In the last year, over 100 of those rides and at least 337 miles were done at home. Despite that much traveling, I can't say I've seen much different scenery.

The first ride I had was for 25 minutes going 1.26 miles. Now my average time is the same, but going around 3.58 miles.

When I was originally injured in 1985, technology like this wasn't even imagined. I'm thankful God has given us the ability to make such devices to help those of us in the quad life or other challenges. Looking at old pictures, I can tell how much my legs have grown in thickness with muscle and improved circulation. I can also see that my feet lay straighter in bed and are more flexible with the increase in use.

If I'm not traveling and sitting a lot, my pressure wounds also heal faster when I get to ride. My doctor attributes much of the improvement to more active muscle movement when cycling. With my first experience in 2015, it was a great feeling to have my legs moving again. I still stay on it a little longer sometimes just because it feels good.

For the next year ahead, I don't know what God has planned. I'm thankful for the time I've had and hope to be able to continue for many more miles to nowhere. This coming week will hopefully provide answers to a different issue, but that will be another post.

Sunday, December 2, 2018

Winter Weather Woes

The calendar says winter doesn't start for another three weeks, but you can't tell by looking outside. Last week Sunday, church was cancelled due to a winter storm, and this weekend isn't looking much better.

Just to my east, a few towns received 15-17 inches of snow in a few hours, We only got about 2-3, but it still ended with my night nurse not able to come and Monday's day nurse coming late. Now this weekend started with rain and wind most of Saturday with another inch or two of snow predicted today.

Weather has different affects on people. Some love the snow and say it's a reminder of God washing us clean and whiter than snow. I do agree that watching snow fall can be pretty, but it often results in my caregivers not being able to come. It also serves as a reminder of cold conditions outside and why I hibernate during winter.

When I visited the Ark Encounter in October, the first level had sounds like a raging storm outside. I have experienced strong storms that may last 30 minutes or more, but can't imagine what it would have been like for at least 40 days and nights.

I have read a few places about the climate changes from Noah's flood would have setup conditions for the ice age to follow. Blizzards like Iowa has received would have seemed very tranquil to what likely happened in this same area during that time period.

Summer storms or winter weather, each should remind us of God's creative power. I believe the world is still stabilizing since these events and should expect changes yet to come. I look forward to a time of little to no snow, but that's likely going to happen in this quad life.

Whatever is predicted and then actually happens this week, I will be thankful I live in a warm home and that I can choose to stay inside.

Sunday, November 25, 2018

Family Week

In late September, my maternal grandmother moved from her house to a retirement home closer to us. She decided to sell her house and my parents, uncles, aunts, and a few cousins have been working to get the property empty and ready for showing.

On Thanksgiving, we got together with mom's side of the family at grandma's new place. Part of the conversation was about working on the house and dividing up items to whoever wanted them. Some of my cousins put their names on various items, but also their children's names for some of the toys.

Dad looked at a few things that he said looked like unique antiques. However, since he wouldn't have grandchildren to pass them down to, he didn't feel right taking them. I've heard this comment more than once in the past few weeks.

Yesterday, my dad's side got together for our annual combined Thanksgiving and Christmas celebration, or thankmas as we say. I like seeing my family again, but part of the discussion from cousins of my age are about their kids and what their family has been doing.

It should be apparent from this blog that I love kids and enjoy working with them. In high school, I had the typical dream of wanting to get married and have children of my own. However, that is extremely rare when living the quad life and I have not escaped the trend.

I'm thankful for all the kids God has allowed me to speak to at schools and church, even though it's only about 30 minutes at a time. I had always prayed to have my own to teach, but that doesn't appear to be likely.

As we continue in this season of thanks and celebration, we need to remember it is not always a time of joy for everyone. I've learned to be thankful for the abundance of blessings God has given me and to not want more. Hopefully in 2019 I can continue to work with schools and get to be a parental influence if just for a short time.

Sunday, November 18, 2018

One Year Preaching

In September 2017, I received my license to exhort, or preach, in the Christian Reformed Church (CRC). My first sermon was a few months later on November 12, 2017. In the year since I first preached, it has been a unique experience.

Last week, I watched an evening church service online. It was a man who had recently been licensed and was preaching at the same service I started. Since then, I have preached at seven CRC services, once at camp, and two back-to-back services at a Methodist church. The total of ten times puts me nearly the same number of schools I have spoken at in a year.

So far, I have not preached more than twice at a single church. Therefore, I have only prepared two messages and have just reused them. Staying in one church, most pastors can't get away with this, but it has helped me get familiar with preaching and not simultaneously make a new sermon each time.

My goal for this winter is to write at least two more messages. I have ideas in my head, but so far they haven't come through my stick to get fully written. Every time I plan to start, something else comes up or I can't get my thoughts to focus on the task.

Every time I preach though, I'm thankful for the opportunity. I know I don't have a clear voice and can be a little hard to understand, but God continues to use me for His purpose. So far, I have only had to turn down one request due to a church sanctuary not being accessible.

I recently read an article that private schools and churches are exempt from the ADA and therefore don't always make an effort to allow access for all. However, two of the facilities I visited made ramps for me to get up on stage and one already had a ramp built-in. Maybe the preaching quad life will raise awareness that all areas of a church need to be accessible.

What may come in another year, I wouldn't try to guess. I pray that I can continue to preach more as well as continue volunteering at outreach events in my area. Only God knows the future and I'll continue going along His plan.

Sunday, November 11, 2018

Age Test

I received a message from my friend John this week saying I needed to edit my blog. In the about me section, I have written "In my short time..." He said that my time has not been short and that I'm now old. I was quick to remind him our age in years is currently the same, but I do have a little over nine months more.

On Facebook, I'm regularly seeing memes that show various items and say if you remember, or used, this item, you're old. I'm not familiar with every item and can very honestly say I have not physically used most of them. As I have said before, I do somewhat think age is relative.

In a few weeks, I will be celebrating my 37th birthday (if I make it that far). That means I have doubled my age since graduating high school. There are also events that are clear in my memory, such as Y2K and 9/11, that are now in history books and college freshman did not experience first-hand. Looking that way, yes my years are not short and have accumulated a good number.

Looking the other direction, I have only been in a career for half the time of my peers. Granted web development as a career option hasn't been around for 40 years, but I'm thinking in general. For speaking and preaching, I'm only beginning to scratch the surface of those that have been working for over four to five decades.

Just like when I look at groups younger than me, my parents and grandparents remember events that happened before I was born or very young. Looking at both sides of the coin, I would put myself about in the middle.

As far as quad life, 33 years post injury does place me in the old man category. In the past few weeks, a few minor issues have come up that do show I've had several decades in this life and have experience to help others.

By the time you read this, I will likely have changed the about section by removing one word. In any case, I'm thankful for the years God has given me and look forward to using my remaining time according to His will.

Sunday, November 4, 2018

Discerning Truth

When I was in college, I had a class on marketing. Part of the teaching was to consider the source, and funding, of information before fully relying on it. As example, a study funded by Dr. Scholls will likely not conclude that going barefoot is best for feet, but that everyone needs particular inserts or shoe type.

It is once again election season with final votes being cast in just two days. For the last few months, political advertising has been increasing on YouTube and social media. When I watch the evening news, almost all the commercials the past few days have been politically geared. These are times I especially remember to consider the source and look for what is not being told.

Main stream media tends to be very concentrated toward one political party. Therefore, I expect to see anything the other party does portrayed in a bad light even if it requires stretching the truth. With access to the internet available everywhere we go, it's very easy to check on what is being put forth as truth. Life experience can also be beneficial.

One commercial I have seen numerous times shows a C5 quadriplegic, Tucker, going through his morning routine while telling his story. In it, he says how his nursing agency dropped his care and forced him to move. This was a rough situation, as I perfectly understand, and then he goes on to say how bad the Iowa Medicaid system is.

The commercial implies he had to go to a facility, but I notice Tucker is rolling around in a house. Therefore, he is either at a very small place that uses homes or is back in his own home. Tucker also doesn't say why his agency dropped him. Was it due to lack of care providers (as I had once)? Did he no longer qualify for help? As a C5 injury, Tucker shows he has some arm control and breathes independently. I've known other quads with similar, or higher level injuries that don't qualify for much care due to not needing breathing assistance.

It is also possible Tucker was denied care for lack of funding. Whatever the case, the viewer is led to make assumptions and support a particular candidate. I do agree that Iowa's Medicaid system needs work. However, I've seen medical funding get messed up as a result of both party's actions. It's just another pawn that is used during campaigns.

I encourage everyone to vote, but also be well informed by researching candidates and their party. The choice can have major consequences for the quad life and every citizen.

Sunday, October 28, 2018

Grade Schools

Every fall for the past 14 years, I have visited with students at area Christian grade schools. Each year is unique with questions and observations, and I enjoy every part of it.

Thursday was my fourth school this year, and my last scheduled grade school for this season. With these schools, I met with six second grade classrooms and one combined 3rd/4th grade class totaling around 100 students.

One of the schools had to be rescheduled due to my hospital visit last month which meant I had one school a week for October. Having them back to back helps me keep my routine in my head, but since I also added a college and a church in the mix, it was a challenge keeping each one straight.

For the first time in my visits, a student asked me if I was ever mad at God. I wondered if she had some sort of family experience with a disability, but I didn't pursue it. It's a little challenging answering an eight-year-old that question, but I answered the truth that I've had times of struggle, but know I have been given much more than I deserve.

Also first inquiries for this year was the weight of my chair (501 lbs) and what the white things were on my arms (elbow pads). Before I come to class, I have the teachers show a couple videos of how I use my mouth stick for typing and other tasks as well as biking and zip lining. If a class is quiet, then I need to rely on the extra activities for further talking points, but most of them didn't need it this year.

Two of the schools only had a single classroom and each of them followed me outside like ducks in a row to watch me get in the van. I try to hide grins as I roll down the hall, but I love getting to work with the students and show them that some people have different abilities, but we're all made by God and need to serve Him.

Sadly, two of my regular schools no longer have me back. I have never been told a reason, but my emails don't receive response after a few years of trying. Thankfully, I'm still able to go to several and still pray that I can continue for years to come.

Sunday, October 21, 2018

Quad Travels

With the challenges of every day life, it isn't very common for high level quads like me to take vacations far from home. This year, with camp in June and Kentucky a few weeks ago, I was able to go out twice.

Excluding camp, this is the first time in three years that I have gone anywhere. Most people go on trips to see particular destinations or visit friends and family. For me, I want traveling to serve some purpose of helping others in some way. If that can coincide with meeting friends and seeing a destination, it's an added bonus.

I think that is partly why I also don't travel very often. Personally, just going somewhere and being a tourist doesn't sound very exciting. Going to Indianapolis every year to camp helps serve kids and the trip earlier this month was to preach and serve a church congregation. The last one just also worked out to also see friends I rarely talk with and visit the Ark Encounter.

Every year though, it gets harder to go anywhere no matter what purpose or destination. It takes several days worth of packing to get all my stuff and making sure I have enough supplies on hand. Then, finding the people that can help me and are willing to come along.

For the last several years, at least one if not both of my parents end up going with me along with my main day assistant. This means time away from family for my caregiver and time off work and taking vacation hours for my parents. All of it takes an increasing physical toll as everyone ages as well as mental stress that everything will go as planned.

After this year, I'm really questioning if attempting more vacations to camp, or anywhere, are still worth the effort. Each journey gets harder for me to recover as well as everyone that helps. I don't have anything further planned for this year at least. I don't have a guess for 2019, but the traveling quad life will likely become an even rarer occasion. I'm thankful for the opportunities I have had so far and the memories they inspire. I'll see what another week brings.

Monday, October 15, 2018

Ark Encounter

For the last three years, I have volunteered at the Ark Encounter booth at the Iowa State Fair. I have read a lot about it, watched videos, and talked with people who have been there. However, I hadn't ever visited myself. Since Dave's church is about 90 minutes away from the Ark, we took the Monday of our trip to finally see it in person.

My caregiver that came along to help at night also wanted to see the boat with us. Therefore, my parents took over in the morning while she tried to sleep for a few hours. Dave met us at the hotel along with another camp friend who wasn't able to come Sunday.

Our group left the hotel around 11:00 and started the commute east. I'm used to rural Iowa roads, but Kentucky has some very twisty, bumpy, and scenic back roads that make for an almost uncomfortable experience. Fortunately, we all arrived in one piece and navigated the expansive parking lot to the ticket booth.

Parking is at the bottom of a hill with all guests boarding buses to get up to the Ark. I wasn't sure both mom with her scooter and I could use the same bus, but it was an easy fit for everyone. I somewhat knew what to expect on the ride, but experiencing it in person was much more amazing. Seeing the full size of the massive ship was impressive and larger than I thought.

After a quick lunch, our group made it inside the vessel by 1:00, leaving about five hours for exploration. When I heard the attraction was built with wood floors, I was expecting a rough ride with lots of seams. However, getting off the elevator I found very smooth driving that was easy to navigate.

Going through each deck and seeing everything how Noah may have had arranged was educational and fun to think through everything. Ramps between floors made easy transition as we started during the storm that wiped out the earth and ended with Noah seeing a freshly plucked branch.

One blog post can't cover everything, but I was very glad to be able to see it in person. With time constraints, we didn't see everything, but did get most of the Ark covered. On our trip home Tuesday, it was again new scenery going through St. Louis and stopping to watch trains in Missouri.

I'm more aware each year how quickly time passes and it did again with this four-day trip. Traveling with the quad life has challenges, but I'm thankful that I was able to preach God's Word and see part of the Bible's history in person.

Sunday, October 14, 2018

Traveling Preacher

Through my years at camp, I have made many long lasting friendships. As a camper, one of the new counselors was Dave. He was a pastor at a Methodist church around Indianapolis and got invited to camp. Over two decades later, Dave and I still gladly serve together at camp and in ministry.

After I received my license to exhort last year, Dave invited me to preach at his church near Louisville, KY. It took quite a lot of looking at schedules and planning, but I was able to go this past weekend and preached at Dave's church last Sunday, October 7.

My church denomination is the Christian Reformed Church, or CRC. I'm used to the general routine of services, songs, and preaching style. I wasn't sure how well I would fit in at a different congregation, but knew I could serve God anywhere.

On Saturday, my parents, caregiver, and I drove through rain and wind arriving at the hotel about 11 hours after we left home. We went through Indianapolis, so much of the trip was very familiar, but the skyline of Louisville was unique as well as tree lined interstates.

Sunday morning consisted of two services, traditional at 9:00 and contemporary at 11:11. I preached my introductory message I give at most churches talking about God's inspired Word, the moral law, Christ's sacrifice, and spreading the good news of salvation. In doing this, we need to use everything God has given us to serve Him, including wheelchairs and diaphragm pacemakers.

At the conclusion of my message and prayer, the congregation gave me a standing ovation. I can't say I've ever had that in a CRC church, but was glad to see I made an impression. I gave the same message for the second service, but could tell my voice was tired from all the talking. Drinks help, but I'm still not accustomed to adding drink pauses in my messages.

After all the preaching, Dave's wife provided a great lunch for us at church. A couple more friends from camp came to hear me as well and joined us to eat. It has been very rare that I see any of my camp friends in person outside of our volunteer week. The time was nice and I'm glad it worked out.

The trip didn't only include preaching though. Monday included another excursion that I have wanted to do for a couple years. However, that will have to wait until the next entry.

Sunday, October 7, 2018


Through social media and general contact with people, I see an increase in the amount of anxiety some experience. Worry and anxious thoughts can be very difficult, but it doesn't have to be.

If you have been following this blog for a while, I have definitely had times of frustration and concern over what the future may bring. Some of the cause has been due to funding changes, health problems, and life in general. However, I have learned well that building up worry and becoming anxious about a situation doesn't do anything to help.

In 1 Peter 5:7 we read, "Cast all your anxiety on him because he cares for you." Also in Proverbs 12:25, "Anxiety weighs down the heart, but a kind word cheers it up." My favorite verse I go back to is Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Letting go of worry and anxious thoughts is difficult and can sometimes take practice and trusting in God's plan. I have had times that I thought looked hopeless for a future, but the result turned out better than I imagined. The transition from event to final outcome is the most difficult time, but is also when faith can grow.

As a Christian, I continue to learn to trust in what God has in His plan for the life I've been given. Yes, I would prefer a "normal" life of not dealing with the quad life. Through it though, I have been able to work with more people and relate to different circumstances than if I had been given another path.

At some point, I also know that life will change from what I currently know. It could be a change in health or funding that I have to change housing or can't be as active. When that time comes, I will continue to look for God's direction and see where He takes me.

This week will hopefully continue as normal. As always, I will wait and see what is to come.

Sunday, September 30, 2018

Less Than a Year

A couple weeks ago, I visited my ENT about an oddity with my trach button. He ran a few tests and the results came back with an infection. I can count on a few mouth sticks how often I've had a trach infection, so I started on an antibiotic September 18. The prescription was fairly hefty with two pills taken three times a day for ten days.

Last week Sunday night, I took the prescription along with the rest of my meds and got ready for bed. The nurse and I noticed my abdomen was sticking out a little further than usual, but I'm often portly late in the day. Memories from last November briefly ran through my head with being on a strong antibiotic and ending in the hospital with an ileus and major stomach pain.

Monday morning came with everything looking normal again. I continued with the antibiotic and my regular routine. Around 10:30, I was on flat time and turned on my side for further relief on pressure sores. With YouTube running on my computer behind me, I watched my list of entertainment in a mirror. I could also see my lower chest in the reflection and noticed my stomach growing.

I cut my side time short, but by noon the battle of the bulge looked near. I opted to skip lunch and quick tried to get some web updates complete along with a note to my ENT to adjust the prescription. Unfortunately, by 2:00 war was declared and the too familiar stomach pain had started. Over the next few hours, some relief was managed and I called in my main day assistant for help.

Around 8:00, discomfort was partially under control, but I still looked at least six months pregnant. I decided to try to make it through the night and we would head to the hospital in Des Moines in the morning. That time came quicker than expected with my night nurse waking up my parents at 4:00 Tuesday morning.

By 6:00, I was again in the ER with the same stomach trouble I had less than a year ago. This time, I didn't wait on the NG tube and it was shoved in for the fifth time in my life. Within an hour, a liter of fluid had been sucked out of me and my nose was the discomfort now with the tube instead of my stomach.

Just before attempting sleep Wednesday night at the hospital, the tube was again removed. For a first in my hospital visits, I was released in an evening and was back home by 8:00 Thursday night. By 10:30 Friday morning, I was again on my regular flat time watching something via computer. However, I stayed on my back as I dozed on and off after several days of little to no sleep.

I'm thankful God has surrounded me with a multitude of caregivers and parents that know me well and how to roll with the flow. Throughout my stay with sitters and medical staff, possibly a future post, I saw how He provides in every circumstance. Problems and frustrations were encountered, but it went well overall. Each of these instances comes with varying diet instructions that have yet to be consistent. Therefore, I'm carefully getting back to a regular diet again and attempting to follow instructions.

For this week, I'm praying it goes as expected and will not include unscheduled trips.

Sunday, September 23, 2018


It is now officially fall in the northern hemisphere. The outdoor temps are starting to chill and my least favorite time of year is approaching quickly.

Last week, my parents were able to get away on vacation. That meant I once again had the house to myself Sunday to Saturday, along with my nurses during the day and grandparents for evening. We still have flowers around to water, so I made sure to get my watering chores complete.

On Thursday, it was nearly 90° and watering everything on the deck felt quite warm. I had planned on an extended time with my legs in the sun, but it felt more like I was baking instead. However, one day later felt too cold to not to be out in direct sun light.

Iowa weather is always highly variable with today being a perfect afternoon while I lay flat in bed inside. At least now with the sun dipping south I get more rays in my window that provide a source of warmth.

Lately, I have been watching a series on Netflix called "Escape to the Continent." Generally retired couple from the U.K. look at buying a house and moving to continental Europe. Some areas, like Spain and Portugal, are warm enough all year to have regular fruit tree harvests throughout winter and hardly require any heat for the houses.

If I had the opportunity to relocate to another country, my guess would be northern New Zealand. They have mild weather all year, mainly speak English, but also have mountains to explore. However, it would be a long way from family and not much rail activity. Just for fun, I looked up recommendations for relocating to New Zealand, but I didn't find anything relating to the quad life.

In Genesis 1, God placed the stars to show change of time and seasons. As the seasons of the year and life come and go, I'll watch for His plans and whatever is to come next.

Sunday, September 16, 2018

Traveling in One Location

I like to travel and see different areas of the country, even though it doesn't always go well. If I wasn't living the quad life, I've wondered what I would have done as a career. The two options that keep coming to me are railroad engineer or truck driver. For the past few weeks, I've been experiencing one option.

During my flat time, I have been watching an excessive amount of YouTube. I came across a channel called Big Rig Travels that follows a truck driver, Steve, on his travels. It's simply a camera mounted on the truck's dash with live video as he drives and sometimes offers commentary. Through this, I've been through a few southern states over to South Carolina then through the mountains to the Midwest and Wisconsin.

Office with a view
A three-day trip ended in central Washington state and as of this writing, heading toward Salt Lake City. Instead of just laying for multiple hours, I've been able to see many miles of travel and a variety of scenery and terrain. However, it's also ten or more hours of Steve driving alone with just a GPS talking back.

As my nickname implies, I'm very into trains and the railroad. As an engineer, a person works in one route, or section, going from point A to B and back again. Depending on the route, it could be very scenic or rather plain, especially after 40 years or more.

Over-the-road trucking allows a driver to see multiple areas of the country, but you never know when you will be home. For me, I could see it being a hard decision and could do a few years of both. However, that is not what God had planned for the life He gave me.

I'm thankful I can see God's creation through technology He has given us. Serving in the life I have has challenges, but I'm thankful for all I've been enabled to do and see. I will see where this week brings me both in real life and following along with others.

Sunday, September 9, 2018

Adjusting Talk

September started with a slow holiday weekend, but it has felt like I don't have enough time for anything since. August web work was very slow, taking only half of a 45 minute sit time to send out billing. The time crunch has come from speaking.

Two weeks ago, I started this school year by talking with a class of nursing students. It was only an hour long presentation, but commute time added over three hours. I think that is about the longest distance I'll go for regular talks.

This week was spent contacting grade schools and looking at fall schedules. Most already got back to me with a date and time to come. However, one school could be a challenge. Most classes take a minimum of 30 minutes to cover my items and allow kids to ask questions. One school I visit has three separate 2nd grade classrooms.

Due to school schedules, I can only be with each group for 20 minutes at the most. I'm working with the teachers to try different timing, but also working in my head how cut a third of my time off. I like to give students time to quiz me, but it may get cut short.

Yesterday I also received a call from a church to preach in October. I have been there before and gladly accept the opportunity. When I preach, I use multiple Scripture passages to cover a subject. This congregation prefers the opposite of just using a single reference and getting deep into it.

I like the switch of doing less computer work and more speaking. I'm thankful God is using me this way and enjoy it. Now trying to adjust my style and work according to the requirements of the audience is a slightly new challenge.

There have been times in life I've become settled in a routine and God sees fit to change it to something new. He has given me all I need for every time, so these will stretch my experience further. At least it looks like this fall could be interesting before I hibernate for winter.

Sunday, September 2, 2018

Expired Discoveries

Every year, Medicaid requires me to fill out multiple pages of information to see if I still qualify. It's not like my condition will improve or I'll win the lottery, but I comply anyway.

My caregiver went to retrieve some paperwork from my closet and doing so caused a minor avalanche of stuff to fall off the shelf. I was laying on my side and had a perfect view as I attempted to stifle laughter while she retrieved my squirting flower amongst fallen items. My curiosity took hold and I asked, "What is some of that?" This started a distraction from our actual task that continued for over 30 minutes.

One of the binders on the shelf contained transcripts from college and final grade results. It confirmed why I did not continue with my degree in accounting and instead graduated with a degree in Information Technology. I hardly use it now, but it seemed like a better decision at the time. Further digging uncovered bags of school work.

Labels indicated they were from 2007 and earlier during my work on getting a B.A. in Computer Science. Since that quest never finished, the recycle pile was started. Continuing to navigate the shelf of historical finding, a few bags of granola bars and candy were found.

Finding a date, one of the bars said it was best eaten by December 2015. The discard pile continued as I halfway waited for a bug or two to crawl away. The bag of sweets contained a few Starburst pieces that I was tempted to try (not like I have stomach trouble). Tapping one on a table made for a good gavel, so I opted to skip it.

The final result ended up with a good discard pile and a cleaner shelf. We did finish the paperwork a few days later and get it sent. Hopefully this year will go smoother than last year when I got denied coverage. I'm thankful for the experiences God has given me in the quad life and it's fun to be reminded of them. I think I'll need to be more careful with old snacks though and wonder what will be found on more shelves.

Sunday, August 26, 2018

Barely Found

With the increase of online sales, physical store locations are disappearing. Ottumwa is a town that has experienced this and has seen closure of K-Mart, Target, Younkers, and more over the last decade. The most recent is a clothing retailer called Herberger's that had their final day open today.

Over a month ago, this retailer was having sales on everything in the store, including the shopping carts. My parents thought this could be handy for bringing groceries in the house, so they purchased one. However, they couldn't take it home until closer to closing date. The selected cart was labeled and we waited until the appropriate time.

That day was this past Wednesday. We took an evening ride to retrieve our cart and enjoy the late summer weather. Upon entering Herberger's, we were greeted with vary merchandise remaining and well used empty shelves and display racks with price tags to purchase. The hunt for our own half-size cart began with going all around the empty store. Dad checked every possible candidate, even discreetly looking at carts the few customers were using.

After nearly 30 minutes, and recruiting a cashier, our target was found stuck between empty shelves filled with display hooks. Dad and the cashier started removing the contents while I sat nearby. My parking spot was in a number of complete and partial mannequins, all stark white and naked.

A child sized figure was propped up to my left about my eye line facing me. I no longer had any curiosity on if mannequins were modeled to a particular gender as all was plain to see. In front of me were adult sized props, but only the bottom half. The back of all them were facing me while our prize was retrieved. While the front is generic, the rear is anatomically correct.

I sat for about five minutes getting mooned and flashed with a multitude of thoughts running through my head. Most ideas went around prank possibilities at camp or unique ways to hang my clothes. However, the price on the smaller figure was much more than I wanted to spend for entertainment.

Living the quad life, I never quite know where I may find myself during a day. I'm hoping this week won't include getting mooned, but I guess the possibility exists.

Sunday, August 19, 2018

Break Week

The last few weeks have somewhat felt like running a marathon, but while still sitting. I preached the last three weeks at three different churches and spent the last two Thursdays at the Iowa State Fair. Today is my first week off and it feels good and boring at the same time.

On July 29, I preached at a small church in Ames, IA. I hadn't ever seen the church before, but I did make sure it was accessible. Dad and I arrived about half an hour before the service started to get setup and unknown to me, they built a ramp so I could get on stage. It felt a little strange at first that I could easily be seen, but I got used to it pretty quickly.

August 5 was another congregation, but this time in town and a building I was familiar with. They also built a ramp so I could access the lower part of their platform. It was a little more comfortable since I preached on stage the previous week, but still felt odd. This was my first time preaching at both churches, so I used my somewhat introductory message of using the tools God has given us, such as wheelchairs and diaphragmatic pacemakers.

Two gospel booth volunteers
My final week on August 12 was at my home church. This was my second time to give the message to my congregation, so it required a new message. In addition to me preaching, dad also covered the service opening and congregational prayer. On top of that, I didn't have a nurse on August 10 or 11, so I preached after two nights of little sleep.

Just as I started, a wave of exhaustion hit me but thankfully a few sentences in I was given a boost of energy. I preached on how to respond to a world of suffering and received several notes thanking me for it, so tiredness must not have shown through.

Between preaching, I volunteered at the Ark Encounter booth at the fair August 9 and 16. The other volunteers can easily hand out gospel tracts, but I have to stop the person, direct them to my hands, then how to pull out a tract. This was my third year and I feel like I gave out more tracts and talked with more people than previous times.

It was a challenge preparing sermons and coordinating with multiple churches among everything else. I started to get in a routine though and it started to get easier. Today is a nice break, but I hope I'm able to do more before winter comes. I'll see what happens the next few weeks and follow God's plan for the preacher quad life.

Sunday, August 12, 2018

Human Please

A while back, two rare occurrences happened at once. First, I went inside a fast food restaurant. It takes a fair amount of time and effort to get in and out of the van, so I normally just stay in and use the drive-thru. The second rarity is that the restaurant was McDonald's. I may eat from McDonald's once a year, if even, making it a very odd event.

Upon entering, I was greeted by two large vertical touchscreens with the words "order here" stenciled on the front. This was my first encounter with such a device and I noted a problem. They require hand
control to use. Further inside and to the right, I saw a bored late teen woman partially leaning over a register. After all my party had used the restrooms, I drove over to the lady to order my chicken nuggets.

She took a fair amount of time to enter our information and seemed unfamiliar with the process, but did manage to get it correct. The only wheelchair accessible table was near the entrance directly beside one of the kiosks. As I ate my food-like substance, I had a good view of the order process. Families and individuals would line up, poke at the screen to make selections, look confused, poke some more, and complete the order.

Payment was done with a credit card in a slot or by tapping it out through a smart phone. The only human interaction was when picking up an order, and it was very brief. I was there for about 30 minutes and didn't see any other customers order through the person at the register.

As demand grows for high wages at entry level jobs, this is how corporations respond. I see the same with the increase of self checkout lanes at mass retailers like Walmart. Fewer employees are required, and therefore less payroll needed, and the consumer is made to do the work of staff.

I refuse to use these new systems and always use a checker or person at the counter. Even if I received the employee discount for the work, I wouldn't make the switch.

Living the quad life has constraints, especially when real world interactions are inaccessible. I'm thankful God has provided me with caregivers that act as my hands and feet, but I still like being as independent as possible. This interaction, and meal, confirmed why I don't visit McDonald's and let me see the changing world I hadn't experienced. I'll look for more human interaction this week and at other food options.

Sunday, August 5, 2018

Time Constraints

It has been over a month now with my new sitting routine. When in bed, I sit for 45 minutes and spend the next 3-4 hours flat. It's a routine that is helping, but doesn't allow time to get much done.

Along with the short sessions, I only sit for 3-4 times a day. At most, that gives me a total of three hours a day that I can easily get anything accomplished. It hasn't been much of an issue, but I'm starting to feel the restraints now with a more active month ahead.

Last week, I sent out a quote for redesigning one of my clients' web sites. They opted to wait on it until later in the year, and I was almost relieved to hear the response. Extra work is always good, but I don't know how I would be able to get such a project complete. Even a simple site that would take a couple days normally would be drawn out for months with my routine.

I'm in my three-week sprint of preaching in three different churches. It's a challenge to get planning complete for each week and everything sent to different people coordinating worship services. I'm trying to do more while flat, but I need to be careful.

In May, I noticed my jaw was popping on occasion when I ate. It was pretty rare, but still annoying. Unfortunately, it has drastically increased the past few weeks and now nearly every meal consists of my mouth grinding and popping. Thankfully, it doesn't happen when I'm just using my mouth stick, but I'm guessing the increased activity while flat is contributing to it.

This week, I had my regular check-up with my doctor for the pressure sores. He made a few changes in my meds for the main wound that will hopefully increase healing. I'm also scheduled to see my regular doctor about my mouth and maybe make progress with it.

Living the quad life has it's challenges, but I have seen God's hand in everything through the years. It may be time to look again at voice recognition options for some activities, but I'll wait to see. A busy week is ahead and I look forward to what the days may bring.

Sunday, July 29, 2018

Amish Visit

Southeast Iowa has a growing number of Amish living around several small towns. Near Albia, IA, there is a small store run by Amish selling a variety of goods. On the last Friday of the month, they have a supper open to the public to help raise funds for their school.

When I had regular Friday evening help, this supper was a regular stop my parents made. Help has been very rare for evenings this year and they haven't been able to get out very often. However, this last Friday was an Amish supper night and the weather was perfect for being out. The three of us decided to take a trip south and enjoy the evening.

It was a small crowd of about a few Amish families and "English" primarily around my parents' age. Whenever I go out in public, I'm used to curious looks from kids, and adults, with my equipment. However, I highly doubt Amish children have ever seen a man using an electric wheelchair controlled by my chin. As soon as I started getting out of the van, I could see the curious faces.

Children are generally curious, and I don't mind helping them learn about different abilities if the opportunity arises. I noticed all the kids were quiet without the usual squabbles from other kids I'm used to. After getting grilled chicken and real mashed potatoes from the food line, we sat at the end of a table where I could watch a game of volleyball.

As mom helped shovel my supper in, Amish kids kept slowly walking past while checking me out. At one point, two girls just stopped and studied me about five feet away. Between bites, I said hi and smiled and they responded with bigger grins. There bare feet slowly shuffled away while still keeping an eye on the visitor with wheels.

After a tour through the store and purchase of bulk spices, it was time to load up in the van and head home. As I backed onto the lift and started my ascent to the door, about a dozen kids watched with fascination across the small parking lot. Dad joked that with my regular lack of footwear, I should fit in well with the crowd.

Living the quad life, I expect to be a person of interest when out in public. I can't say I see very many people like me regularly out and about, so people tend to be curious. Friday was a little more interest than usual, but it serves as a reminder to try to always be polite and set a good example, even if I don't succeed.

If the weather is good for the next Amish supper, I can see going again. Maybe next time I should learn Pennsylvania Dutch though and see if the kids will speak more.

Sunday, July 22, 2018

Be Prepared

Every week when I make my entry here, I normally have an idea what to expect for the week ahead. That was the case last week, but another one of those unexpected events blew in on Thursday.

The day started early with my day caregiver calling off due to illness. Dad was busy with deadlines at work, but he would be able to come home a few times during the day to help with my cares. Around 3:00, I was on Facebook and saw a notification that a local news station was doing live coverage of storms in the area. I was on flat time and not doing much anyway, so I started watching it.

A small, but strong, storm cell was just east of Des Moines and had produced tornado damage in Bondurant. The cell was growing in size, but it was heading directly east and would be at least a county north of us. It was only mom and I at home anyway, so I wouldn't be able to get up in my chair. The report continued showing damage to houses as well as storm tracking and other cells in Iowa.

Dad came home about 3:30 to do my afternoon cares and he agreed with my estimate that we would be well south of any trouble. Over the next 20 minutes, we watched as it started to drop south and get closer to us. Just about 3:50, the tornado sirens went off in town, but it still was tracking to our north. However, by 4:00 the storm shifted slightly south again with a very prominent hook echo on the radar. Winds started picking up outside and the newscasters were saying anyone in my area of town needed to seek shelter immediately.

At this point, dad and I agreed as well and he picked me up, brought me downstairs, and laid me on a mattress on the floor. As is typical in Iowa, he went back upstairs to check the weather while mom and grandma stayed downstairs with me. The lights flickered a few times, but that was it. Dad came down and said the clouds looked odd, but he never saw anything of a tornado and the sun was coming out.

With some grunting, dad got me off the floor and back upstairs to my bed where the news was still going. They said damage was reported at Vermeer Mfg., a nearby farm equipment manufacturer, and it sounded extensive. I got in my chair a short while later to run errands and we noticed leaves from corn stalks all over the yard.

Friday's nurse was sick as well, so dad stayed home with me and we went to survey damage in the area. A short drive to the north, we found extensive tracts of corn fields flattened by an apparent tornado. The area was about half a mile from our house and explained the origin of the leaves. One of the plants at Vermeer also suffered severe damage from what was determined to be an EF-3 tornado. The facility is around a mile from my house with parking lot lights clearly visible at night.

Thankfully, there were only 13 minor injuries reported with no fatalities. If the storm had shifted another mile or less south, it likely would have been a different outcome. This week has taught me again to be thankful for God's blessings. It also shows that we always need to be prepared for any situation and not wait until the last minute. This week will hopefully be calmer, but I'll continue to go along the path planned for me.

Sunday, July 15, 2018

Numbering Up

July hasn't been a busy month and it has allowed for a lot of down time and healing. However, I'm not just laying around watching the clock.

This month marks three years since I started using the FES bike. My latest report lists 150 sessions and 439 miles biked. I know a few sessions also didn't get recorded, so actual numbers are even higher. For someone that hasn't walked in over 33 years, I think it's pretty good.

Regular readings
One of the parameters the bike records is how much power my leg muscles are putting into the work. Usually, it just reads 0.0, but it will go up to 2.0 for short stents when my legs are stiff. This past Friday, the reading stayed consistently around 2.7-2.8 for over a minute. That means my own muscles were responding to the stimulation and doing work instead of just going along for the ride.

With getting back to biking, laying flat, and my regular high protein intake, my pressure sores are also responding. Different caregivers give various responses to how they look, but this week both my day assistants said they looked good. The one that worsened last month still has a long way to go, but I'm thankful for any progress. I pray they continue the next few weeks as break time will soon be over.

A couple weeks ago, a church asked me to preach for them on August 5. Unfortunately, the facility is not accessible, so I had to decline. A few days later, I was asked for the same day at another, accessible, church and was able to accept. My own church asked me to preach in August as well and that was decided to be the 12th.

This week, another church in northern Iowa asked me to preach on July 29. It sounds like I can get in without trouble and accepted the invitation. That means I'm scheduled to preach three weeks in a row at three different churches. I plan to preach the same message at two of them, but coordinating everything is getting tricky. I'm also scheduled to work at the Ark Encounter booth twice in August during the Iowa State Fair and to speak to nursing students at the end of the month.

I am thankful to have these opportunities and the break before they begin. Hopefully healing will continue even with a busy quad life. I'll see if anyone else calls this week!

Sunday, July 8, 2018

Odd Quad Thoughts

This has been a busy week of laying around a lot. When I get extended amounts of time I don't do much, my mind tends to wonder.

Every day I have a nurse, I do skin checks usually twice a day. It's a simple process of holding a mirror so I can check from head to foot for any red areas, scratches, scrapes, etc. Most of the time, everything is normal, but other times I find clothing may have been too tight or something was poking me in my chair. As I glance everything over, I wonder what it's like to have a body that feels and moves to my command.

I can often see my legs laying in front of me and I wonder what it's like to walk. Walking is something millions of people do on a regular basis without any thought, but I don't remember it. Using my FES bike, I partially experience regular leg movement, but it's only for a short period.

For most of the year, I go barefoot. I am part of an advocacy group promoting the benefits of shedding footwear and a common discussion is feeling different surfaces. The descriptions somewhat make sense, but they are still only something I can guess at as I see my feet lay on my bed or wheelchair foot pedals.

The same thoughts occur with my arms and hands. What's it like to pick up something, get your hands dirty with work, and other common tasks? I likely will never experience any of these things in my life. However, just because I don't feel anything, that doesn't mean my body is incapable of experiencing touch.

All the nerve endings exist in my skin just like everyone else. When they are stimulated though, the signal doesn't go all through my spinal cord for me to register it. I was up in my chair a few times this week and I kept getting much stiffer than usual and more muscle spasms. I did get on my bike to help, but my legs shook and jerked so much that it was difficult to start.

My guess is that the larger pressure sore from camp is starting to heal and is painful when I sit. The best solution is staying off the area and allow it to heal. Unfortunately, that will likely take several months, so it becomes a tricky balancing act of being good for body maintenance and keeping active. This is the first entry I've typed while flat in a long time, but likely not the last.

I'm thankful for the abilities God has given me and continue to be amazed at His creative work in the human body. This week ahead will likely be similar to the last few, but I will see what God has planned.

Sunday, July 1, 2018


It has been over a week since I got back from Indiana and I am still recovering. I've been saying for a few years I'm getting to be an old quad and I'm wondering if it's actually true.

During counselor orientation, the camp founders usually talk a little about why they started CHAMP Camp and the first few years. In 1991, the pilot weekend started with just a few kids that were residents of a children's hospital in Indianapolis. Technology had allowed them to survive spinal cord injuries and other diagnoses and camp's purpose was to enable kids to enjoy life more.

Originally, an age limit or graduation age was not set as it was unheard of for kids with such complex medical needs to live past teen years. I've heard similar statistics before through the years and have seen God carry me beyond every statistic given.

Dave, a camp founder, used me as an example this year to demonstrate how greatly things have changed and how camp has gone further than they ever dreamed. One of the original campers also visits and we relive old camp memories. Both of us have seen the passing of many of our former bunk mates as well. While I have been given many opportunities, I am feeling changes come with the years.

At camp 2017, I was dealing with three pressure sores. Thankfully, they changed very little during the active week and it didn't seem to have a major impact. The same three remain this year, but one of them got nearly four times deeper after the week. As a result, I'm only staying upright 45-60 minutes three times a day. The hot temps and cold air conditioning also has resulted in a lot more suctioning (clearing out my lungs) since camp and just generally being tired.

I am very thankful I was able to do another year and get to work with the campers and some counselors I've known for most my life. I also got to deliver the message at Sunday morning's optional church service for counselors.

If God allows me to get to another year, I don't know about attending CHAMP Camp 2019. It would be great to get to 15 years as a counselor, but I'll see what God has planned. I could give thanks this week for my daytime funding being approved for another year. I'll see what happens in that year and follow God's plan.

Sunday, June 24, 2018

CHAMP Camp 2018

Last week was my annual volunteer time at CHAMP Camp. This year marks 25 years since I first started going, and I still adore every part of it.

I started going as a counselor in 2000 and this was my 14th year in this role. The cabin I was in had four boys, two the same as last year, another camp veteran, and one newcomer. They all were ambulatory for at least short distances and could primarily do their own care. This made for very easy care giving for the 12 other counselors and I.

Tipsy Counselor watches Campers
Every morning, we were ready for breakfast well before time as well as for most activities. This allowed for great opportunity for the boys to spend time together, and for pranks. Every year has a theme with this time being "back to nature." Plastic bugs were a staple in decoration and various leafy Christmas decorations re-purposed.

Another cabin had a large inflatable poop emoji as a lawn decoration. One evening, my bunk mate camper, along with two counselors, relocated it to our cabin. It made various visits to each camper for a picture, my wheelchair, and a few other locations before being taped to the cabin's chimney. This prank resulted in many more with a conclusion of one counselor's mattress, and clothing, floating in the pool after the closing ceremony.

Through the years, I love working with the kids and watching some of them grow from one camp to the next. Our new camper this year was unsure about fitting in, but he soon realized he wasn't the only kid with a trach and participated in all the activities. By Thursday, he was rating us close to his visits to 6 Flags and his love of roller coasters.

As much as I enjoy camp, I also see how much work it is for dad and the caregiver I take for nights. They do much more than I can ever give back and I wish I could do more to ease their tasks. All too soon, the week was over and we once again made the eight-hour journey home.

I don't know how long God will bless me with the ability to work at CHAMP Camp, but I cherish the memories from each year. I will see what is brought to the quad life in the next several months and follow the path I'm given.

Sunday, June 17, 2018

Father is His Name

About a month ago, we observed Mother's Day. Today is designated to acknowledge the other parenting half, Father's Day. However, who is your father?

For my male parent, I call him dad, pa, pop, old man, and a few other terms. However, I rarely use the term given this day and that most adults use. That is due to one verse Jesus said in Matthew 23:9, "And do not call anyone on earth 'father,' for you have one Father, and he is in heaven."

In this passage, Jesus is referring to a spiritual head. Just as today, some spiritual leaders wanted the term as a sign of them being head of a congregation or group of people. Jesus reminded them that He is their Father, not someone who dwells on earth.

As a result, I almost exclusively only say Father when I am praying or reading Scripture. It helps me to remember who I am speaking with, someone that has supreme respect and is my Father in heaven. The few times I've used the term for my dad or grandpas, it doesn't feel right to me and that I'm using incorrect terms. I know this isn't the case for everyone, but it is my reasoning for the terms I use, or don't use.

In my years, I'm thankful for everything God has done for me through my dad. With the injuries mom and I received, he has had to do a lot to help keep us healthy and in a comfortable home. I know the responsibilities get overwhelming at times, but I know I can always rely on him to help when needed.

For several years now, his day has always been while he is helping me at CHAMP Camp as a counselor. I hope he's able to take time on his own to relax and do what he enjoys, but it depends on God's plan for our lives.

For this day, and week, be sure to give thanks for parents and all they do. Especially remember to look to our Father in heaven and remember His sacrifice that He gave for all of us. I look forward to one day meeting Him face to face when this quad life is over.

Sunday, June 10, 2018

Waiting Approval

If you have actually been reading this blog for a few years, you may remember 2014 was a challenge. I lost my insurance plan due to the Affordable Care Act and the new plan I was on decided I didn't need caregivers. The following months consisted of multiple appeals, talking with doctors, politicians, and the Iowa Insurance Commission.

After much prayer and trial, insurance finally agreed to cover my night hours. Working with the Department of Human Services (DHS) and Iowa Medicaid, days were able to be covered through a program called CDAC (Consumer Directed Attendant Care). As I said in last week's post, it requires a lot of paperwork for my caregivers, but it works to get everything covered. However, it requires approval every 6-12 months.

My last approval period was for a full year, starting from July 1, 2017. That year is nearly complete and all the documentation was submitted in early May for authorization past June 30. As of today, nothing has been heard for a decision.

Since my insurance upheavals in 2014, Iowa Medicaid has also made major changes. Some politicians thought it would be cheaper to privatize the insurance and handed it over to three different companies from out of state. Two of these companies have now dropped all clients and it's down to one company handling everything. A multitude of stories have come forward of people not getting necessary coverage, medical companies like nursing homes not receiving payment, and several other problems. With 2018 being a governor election year for Iowa, it has been one of the campaign topics.

Everyone who used Iowa Medicaid had to select one of these private agencies to handle their needs, except if you have private insurance and another Medicaid program. Since that describes my situation, I'm one of the 1% of Iowans that got to stay on regular Medicaid. Since there are few of us, there are fewer staff handling paperwork and it can take longer. It is cheaper for Iowa to keep me on the current system than to deny it and send me to a care facility, but we're still uncertain on what will happen.

Just like four years ago, I will continue to trust in God's provision and go where He takes me. In many ways, it would be easier for my parents especially if I was in a facility. At the same time, I would lose my ability to be able to be active in the community. In less than three weeks, I will have an answer. Until then, I will try to use the time God has given me at home to serve Him.

Sunday, June 3, 2018

Paperwork Problems

Everything in the medical world uses paperwork. The majority of it is now in digital format, but records are kept of absolutely everything. I'm almost guessing there is a requirement somewhere to count how often someone blinks.

It's not only the patient that has extensive records, it's also the caregiver. All license information must be current, as well as a host of other requirements. For my daytime help, they also have to have paperwork with the state of Iowa. Last October, everyone went through an update and had approval for another few years. At least that's what we thought.

Working for the state, it's always an uncertainty of when the previous month's hours will receive compensation. My main day assistant noticed her time from April was taking much longer than usual to go through the system. Finally after some investigation, she was informed that her paperwork wasn't in order and was not registered as a care provider.

When her pack of nearly 30 pages was completed in October, one signature on one page was missed. That sheet was sent to be corrected and put in the mail, but it apparently was never received. My county DHS worker showed in her information that my caregiver was approved, but digging deeper in other records showed the opposite. Now she has had to register again with the state and wait for approval that could take several months.

I'm thankful that resources are available for the assistants I need in order to stay home. There are many people in the United States that don't receive as much and are forced to have family for help or live in a care facility. Other countries may not cover anything and someone with a disability like mine may not survive such conditions for very long.

It can be easy to worry about the future and what tomorrow will bring when times like this come. However, God regular reminds us in His word to not worry, He is in control. Life may not always go as we expect, but it also increases our trust in Him. I will see what this first full week of June brings in the quad life and use what time I have been given to serve.

Sunday, May 27, 2018

What swamp?

A couple years ago, I updated my service plan for phone and internet. It was one of those price for life plans that remains popular, saying the price won't change as long as you keep the plan. Unfortunately, that of course has not been the case.

Every month for the last six or seven, the bill keeps getting higher. I investigated the breakdown of each charge and saw one that was increasing was one labeled "Iowa communication fees." I assumed this is some sort of tax, but wanted to check. Like any good IT person, I went to my favorite search engine to investigate.

I typed in the start of my search, "what are..." and then stopped. The suggested search questions had me wondering what information is known about me, and anatomy education.

My area of Iowa has been rather dry lately and I definitely don't have a swamp in my backyard. In the winter, it may be nice to own some land in the south for a retreat, but I have never acted upon the thought. If I did, then a stray visitor might be something I would question.

For the other suggestions of bones, muscles, and lungs, I'm now curious how often these questions are asked. It is likely I could find new information on each of them, but I think I have the basics pretty well covered. I'm fairly confident lungs are what provide oxygen to the muscles so bones can move and hit unsuspecting caregivers.

After I continued my search, I didn't get much further on my investigation. If I have yet another increase in my bill next month, I'll likely contact my provider directly. I learn new things in the quad life almost daily, and sometimes from unexpected sources. Learning God's creation never ends, and tools made to help can provide good entertainment.

Sunday, May 20, 2018

It's Just Temporary

If my Bible reading schedule continues at it's current pace, I should soon be entering the book of Ecclesiastes. It was written by the Israelite king Solomon and starts with saying that everything is meaningless. Reading through it can be difficult, but also helpful when you look at it carefully.

The world we live in has times of joy and happiness as well as suffering and sadness. No matter what the circumstances are, we need to remember they are only temporary. The latest promotion at work, fun from vacation or a new child in the family; these can be times of excitement, but are only temporary. At some point, new job stresses or personal expenses will turn the pleasure to torment. Vacations quickly come to an end and children will cause grief and stress at some point as well. However, it doesn't end there.

When you're experiencing a cold or flu, it can make life miserable. Within a few days to a week, it will likely be gone and just be a memory. For those like me that are living with a lifelong disability, spinal cord injury, CP, MD, MS, etc., it's only temporary as well. Everything in this life will come to an end at some point, whether we're prepared or not.

This week, yet another school shooting occurred and has been going through the news. As with previous massacres, questions arise as how to stop such atrocities from happening again. We need to stop teaching that life is just an accident, that is isn't important, and that it's meaningless.

Yes, everything in this life is temporary and will come to an end, but not life after leaving this earth. Solomon concludes the book in Ecclesiastes 12:13-14, "Now all has been heard; here is the conclusion of the matter: Fear God and keep his commandments, for this is the duty of all mankind. For God will bring every deed into judgment, including every hidden thing, whether it is good or evil."

Life is a special gift from God to be used to serve Him. Trouble and persecution will come, but it should make us look forward to the life to come. All we need to do is truly repent of our sins and serve God completely. I encourage anyone reading this to read the book of John while time allows. We do not know what another week, or day, may bring.

Sunday, May 13, 2018


The day has come again specifically set aside to honor our mothers. I have been watching a series lately about the godly men who helped to form America, but how often do we look toward women, especially mothers.

In Genesis 2-3, we read about our first parents, how God formed them from dust, and commanded them to be fruitful and fill the earth. Adam named his wife Eve, because she would be the mother of all the living. So no matter who you are, as long as you're human, we have the same great great great ... grandmother, Eve.

Reading further to Genesis 21, Abraham's (Abram) first son was Ishmael, and it was his mother Hagar that found his wife. How great a responsibility this was to not only raise your child, but then find the person he would have for the rest of his life. Today, we leave it up to our own choosing to find someone to date and marry. I wonder if the practice still happened today if marriages would be better, or worse.

The entire book of Ruth tells about a woman who came to God and served Him in a foreign land with her mother-in-law. Following God's leading, she eventually re-married after her first husband's death and became the great-grandmother of King David. He was called a man of God, and I wonder how much influence his mothers had in his upbringing.

Throughout Scripture numerous examples of godly women are given. Proverbs 31:30 says, "Charm is deceitful, and beauty is vain, but a woman who fears the Lord is to be praised." I'm very thankful for my mother who has brought me in training of the Lord and has done so much for me over the years.

If you still have the opportunity to speak with your mother, or grandmothers, be sure to thank them for the role they played in your life. Mother is not an easy job title or one that necessarily ends at a certain age. This quad life has been very blessed by the numerous women, mostly all mothers, God has surrounded me with and I pray He does for you as well.

Sunday, May 6, 2018

Tulip Reach

In my sermon last week, I encouraged the congregation to pay attention to the tools God has given us and use them to serve Him. I gave out million dollar bill gospel tracts to everyone with the challenge to give one to someone by today.

Over the last three days, Tulip Time, a Dutch heritage celebration, has been held in Pella. On average, 150,000 people from all over Iowa and other states attend during the festival. A few months ago, another man from the area worked to organize an evangelism training time each morning of the event and then send out everyone to talk with tourists and hand out gospel tracts.

Friday's Group
I helped with it last year and worked to get the training and gathering location based at my church. On Thursday, there were about ten of us and each day increased to Saturday's total of around 30. We started the day at 9:00 and then by 10:30 spread out to the community.

My assistant got in some good walking exercise as we strolled around town. Most conversations I had were short, but productive. Friday, as we worked through a busy sidewalk, a man who I hadn't seen before noticed my t-shirt talked about creation. He excitedly came up and began talking with my assistant, another group member that was with us, and me. The 20 minute conversation covered a variety of topics and we learned he was a student at MIT and spoke six languages, English not being his first. He offered to buy us lunch and continue talking, but ended up unable to join us.

Before church, I had 400 tracts ready to give out. Now with the week complete, I'm down to less than 100 left. Days like these are in a way rejuvenating for me. Getting out and actively working, especially for Christ, makes me want to do more and remain busy.

Only God truly knows what my calendar will contain. Living the quad life, I can sometimes quickly lose momentum and energy. I pray that the work we were able to do will lead to eternal benefits and I will continue to serve and remain active in the coming months until winter returns.

Sunday, April 29, 2018

Slow Down

Since late March, I have averaged at least one speaking engagement every week. Today was my last scheduled time for a few weeks and I'm somewhat looking forward to a break.

I gave the sermon at my home church today for a congregation of around 200. It was a repeat of a message I gave earlier this month at a different church, but maybe a little more refined. Looking back on it, I missed a few points I wanted to include, but primarily got everything I intended to cover.

For the past few years, I have wanted to get into speaking more regularly and could see myself doing it as a career. I believe this past month has been a good test of what that type of life would resemble and everything involved.

One area I would need to develop further is use of notes. I'm learning to research and prepare information to present, but I tend to basically memorize what I will say and then repeat it. On days like today I do have a single sheet with some notes, but I rarely look at it. If I was doing more of a variety of topics, notes to help jog my memory would be more important.

Flipping from one page to the next isn't an option though, so I limit myself to only one page. I somewhat get around this by using PowerPoint along with my information. It not only helps visual learners in the audience, but doubles as a way to keep me on track. However, it also adds to my preparation time, remembering slide order, and coordinating with the person running the slideshow.

The quad life has unique challenges, but I have learned how to work with the abilities I have been given. Today was my third sermon I preached, but I felt extra pressure with it being my own church. I know the difficulties going on in various areas and wanted to help address them, but not go into it too much either.

This coming week will have more times of getting out of my comfort zone. I look forward to them and seeing God's plan unfold.

Sunday, April 22, 2018

I have a Stick

In 2006, a family in my church, the Hoetfields, needed help with watching their children. At that time, it was their two-year-old daughter, Rae, and infant son James. James' twin sister Elaine was born with a number of medical challenges and had to spend time in the hospital. Unfortunately, Elaine went home to the Lord after a few short months with us. During that time, my family grew close to the Hoetfields and their kids.

My parents call Rae and James their adoptive grand kids and they are regular visitors. Rae is now 13 and James 11. Several weeks ago, Rae had an evening concert that her parents attended, but James decided to stay with us. Mom was also gone that evening, so it was just dad, James, and I.

Joel and kids in 2008
About an hour before James' parents were due to pick him up, I offered to watch a show he wanted to see on Netflix. As I laid flat in bed watching the animated entertainment, he sat beside the bed and updated me on the various characters.

As the show progressed, I noticed James kept poking at one of his feet. After about the fifth time, I said, "Yes, that's your foot." He then told me about a splinter he had gotten in his heel at home and was uncomfortable and was hoping to get it out.

Of course I have no personal experience in such things as splinters. However, dad has had several instances of them and during my lifetime has readily told many times how he lets them work to the surface and then digs them out.

My parenting skills need more development. I retold the routine to James who was fine until I said dig it out. With his eyes as big as saucers, I quickly backed up and said if he left it alone, the splinter would work itself out. Just to keep barefoot and not drive it further in. This answer satisfied him and we went back to the show.

Maybe a minute later, he was back to poking at his heel again. Trying to practice parenting, I indicated with my mouth stick and said to move over so I could take a look at it. The saucers returned for eyes and James said, "No, don't dig it out!"

Me while waving my mouth stick I replied, "I have a stick, what am I going to do?"

James, "Oh, good point."

He repositioned on the stool he sat on, and I could see the tiniest of spots on the bottom of his foot. It didn't have any red areas or infection that I could see and looked fine. I poked around it for good measure and reassured him it wasn't bad and everything would be okay. Not long after this, it came out and all was right in the world again.

Looking back on this exchange, it made me realize something I hadn't noticed at the time. James didn't see a mouth stick or Joel the quad laying in bed. I was a normal guy with my version of hands just hanging out and helping with a problem.

Living the quad life, I'm very used to getting stares when in public and generally being ignored. I often wonder if I had been blessed with children, if they would just see me as James and his sister do. I look forward to continuing to watching these two grow and improve my rare parenting opportunities.

Sunday, April 15, 2018

Tech No Week

It has been a busy week in the quad life, and not without interesting times. Last week Sunday was my first sermon of 2018, my parents left for a week-long vacation Tuesday, and I spoke at the Iowa Lung Association Tuesday. Each event has had it's own individual circumstances.

When I agreed to preach last week, it was early February and I thought by April 8 warm weather would be upon us. The day of the sermon bare got to mid 30's and had snow showers. I can tell I need to practice on single, one-time talks. The message I gave went okay, but I ended up missing a few points I had planned to cover. In every other presentation I give, I basically give the same talk year after year and adjust the first few times. Sermons aren't generally done that way, so more practice is needed.

The service was held in a school gym after a potluck lunch. It was equipped with a microphone system, but ended up being full of echos. I'm not used to hearing my own voice and partly ended early due to sounding dry and scratchy. My grandmother was unable to hear with her hearing aides, but I did get good responses from the rest of the crowd.

Before leaving, dad went around checking light bulbs and anything he could think may need work while they were away. Tuesday came and went without trouble and they got to start a much needed break from regular life.

Thursday's conference is one I have been preparing for and looking forward to since last fall. The organizers very nicely had a ramp to the stage so I could actually be seen. It was a little tight with my chair, and groaned under my chair's weight, but it worked. My PowerPoint worked okay, until it got to my videos. They stuttered and started and unfortunately wouldn't work for anything. I used a lapel mic and it picked up my voice, but I sounded like a metallic robot of sorts.

A few people told me to make sure to give time for questions, so I decreased a few of my talking points and had about 15 minutes to spare. Unfortunately, only one person asked for further information and I ended up ending my time short. One of my long-time RT's met me afterword and said the previous night's party may have resulted in a few hung over participants in the crows with fewer questions.

My assistant and I finally got home after the talk, hit my room's light switch, and no response. The light that dad had checked was now dead. It's a fixture that also has a very unique type of plug on the bulb that's making it difficult to find a replacement. Dad said last week that when the bulb died, it would likely require a new fixture. So I sit in a partially lit room with a lamp borrowed from another part of the house.

I'm very thankful that I had these opportunities to present and that my parents could get away. If everything went as planned, it would be boring. Hopefully this week is calmer, but I will look for God's guidance in good times as well as slightly frusting ones.