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 seems. 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.