Sunday, June 30, 2019

Rapid Change

In life, you can be traveling along the path you're given and everything can be going well. A sudden unexpected bump can change your course and take you down unexpected paths.

Last week, I wrote about my challenges at camp this year, but I wasn't the only one. Bradford Woods is heavily wooded with trees completely covering most trails. With all the rain, we saw where one large tree had been uprooted, dirt and all, and had damaged part of the trail. In a different area, another cabin was returning from the zip line.

Along the path, one boy was being pushed in his wheelchair by one counselor and another walking beside him. Without notice, a large branch fell and hit him in the head, cracking his skull. The two counselors directly with him were uninjured. The camper was taken to the hospital for surgery and a few hours later was acting as normal and sad that he wouldn't be released in time to return from camp. Through no fault of his own, or others, plans quickly changed.

Two days after returning from camp, I was starting to recover from the week and glad to have my regular routine. My main night nurse was partway through my routine when she told she had resigned and will be leaving in late August. She plans to return to school full-time to pursue a different career. This nurse has done the nine-hour shift four nights a week nearly every week for over five years and I have been very thankful for her care.

The head of the nursing department called to confirm what I already knew. Finding nurses is very hard, even harder for nights. They will be advertising in my area, but can't guarantee when or if anyone will be found. He suggested to also try social media as some clients have had success with finding help.

With this news, I went to the dentist Monday to have my tooth removed and get the implant. After an hour of pain and discomfort, my lower, front right tooth was pounded out. However, the implant could not be put in and I have to wait until December to get the tooth. In the mean time, I have a large gap in my mouth.

I'm right-handed, which in the quad life means I mainly use the right side of my mouth. Using my mouth stick is a challenge and I can't use it at all when I'm flat. In addition to waiting until December, Iowa is changing dental plans for Medicaid users on July 1. That means the approval I currently have for the implant will need to be redone. That process took over a year the first time.

If a nurse can't be found, it's very likely I'll need to go to a care facility. A new group home has begun construction in my hometown, but after several emails the facilitators of the home said they will not have people with my care needs. That would mean I have to look at the four nursing homes in Iowa that take vents, none of which are close to home. Moving may also readjust my December tooth appointment. In retrospect, having my tooth removed at this time is probably one of the worst decisions I've made. However, it's not one I can undo.

God has given me 34 years of care as a quadriplegic and I know He doesn't stop. Similar nursing situations have come up in the past, but they worked out. I pray someone is found, but am ready to serve from a nursing home if needed as well. It has taken me three times longer to write this blog than usual with some pain, but I can still get it done. I pray this week goes better, but have learned to roll with changes and follow God's lead.

Sunday, June 23, 2019

Cold Difficult Week

For my 15th year, I spent the last week volunteering as a counselor at CHAMP Camp. It was nearly the most difficult time I've had and not one I want to repeat again.

As has been usual, dad, my day assistant, and I left for Indiana on Friday morning, June 14. I've had trouble with the ten-hour drive before, but have learned to take extra breaks and drink plenty. The trip went well and our group of three got to camp late in the evening.

Rare sun near the pool
Indiana's weather has been similar to Iowa lately with cool temps and plenty of rain. The forecast for the week called for daily rain and thunderstorms and high more reminiscent of early spring. Saturday's counselor training sessions were moved indoors to avoid weather, but we still had to seek shelter in the cabin bathrooms when the tornado sirens went off.

Usually by Tuesday to Wednesday night of camp, I feel completely wiped out, ill, and not sure how I'll finish. With only a day or less remaining, it isn't too hard to struggle through to the end. This year, that feeling of pure exhaustion was deeply rooted in by Saturday night and only left me for a few hours at a time for the remainder of the week.

With lack of movement and other factors, those living the quad life often struggle with temperature regulation, especially cold. I fare better with cold than many others, but prolonged exposure affects me and I have a hard time recovering. With outside temperatures mainly in the upper 60's to low 70's and cabin air conditioning varying from 68° to low 60's, I started most nights cocooned in two blankets and pillows. Several evenings, and afternoons, I was afraid I would need to leave early. I didn't feel like I helped very much with the three boys in my cabin, but was able to some.

Two of our three campers
I didn't bring much warm clothing, but had a few times with a sweatshirt and shorts. Thankfully, with much prayer, I was able to stay the entire week and returned home late Thursday, June 20. It has now been a few days since returning and I'm still tiring out quickly and not feeling quite back to normal. Another former camper turned counselor has volunteered for several years as well. He struggled this year also and plans to take a year off. I was unsure before going this year, but now feel confirmed that it's time for me to retire. I am not as young as when I started volunteering in 2000 and age is gaining an upper hand.

With all the trouble, I was thankful to hear my three pressure sores did well. One stayed the same, one improved, and the third only grew by a very small amount. Hopefully that will allow me to stay more active this summer and fall.

Tomorrow, I'm finally scheduled for my front tooth extraction. I'm hoping it goes well, but this week will require relearning how I use my mouth stick and may delay future updates. I will see what adventures await another week.

Sunday, June 16, 2019


For most people, getting from one location to another doesn't take much thought. In the house, walking around is an easy task and longer distances can be traversed by any car, bus, train, or some combination. Living the quad life, it isn't as simple.

Just getting out of bed takes a lot of work with me either getting picked up by hand or with a lift. Finding a wheelchair that works well for me takes years of planning followed by continued maintenance. Just to go from bed to the opposite end of the house takes 15-20 minutes. Then the challenge gets increased with leaving the house.

I can't simply hop in any vehicle, it has to have a lift for my wheelchair and be big enough for me to fit. Getting in and secured with straps to the van takes about 4-5 minutes. It's fine on nice days, but cold, wind, and rain can make it seem like an eternity.

To my standards, I have a new wheelchair with it being less than four-years-old. The van I use is about 25 years old, but works pretty well. I am very thankful that I have been blessed with these devices that allow me the freedom to get out and be active. I know this is not the case for everyone.

After giving thanks to God for these gifts, I also thank my dad for all he does. Over the years, he has become an expert at working on my wheelchairs. Some maintenance has required working with micro-switches in my chin control so I can keep moving. When I cracked the frame of my chair, he completely took everything apart so the frame could be brought to a weld shop. In less than two days, he had disassembled it, welded, and reassembled so I didn't miss a day of class.

God has also given dad skill in vehicle mechanics. Maintaining the van's motor, chair lift, and everything else to keep it working. He has also helped with my physical needs ever since birth and continues to work to earn an income for our family and provide medical insurance.

On this Father's Day, I give thanks to my Father in heaven and for the multitude of blessings He has given me through family. I pray that you can do the same this, and every, day.

Sunday, June 9, 2019


This week, I have been seeing a lot of rainbow decorations in the news and on social media. They serve as a good reminder of the past and the future.

Genesis 9:13 says, "I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth." God had destroyed the entire earth, all land-dwelling, air-breathing animals, and mankind in a worldwide flood. He saved one family, Noah, and representative animal kinds aboard the ark. The rainbow promise was that God would never send such a flood again.

I've seen some people claim that Noah's flood was only a local event and didn't encompass the entire planet. However, if that's the case, then God's promise to never send such a flood again has been broken many times. Just in my lifetime in central Iowa I have seen devastating local floods, including this year. Catastrophic local floods have happened many times in history throughout the world. One in more recent times was caused by Mount St. Helens and carved out a canyon 25% the size of the grand canyon. God promised to never again send a global flood, not local.

In Noah's flood, everyone who was saved had to go through the door of the ark. Jesus compared Himself as a door that if we enter by Him, we will be saved (John 10:9). Peter also said that as the world was once destroyed by the flood, it will again be destroyed, but by fire. It will also be a global judgment, not just a local event.

The rainbows I have seen recently were meant to promote a particular lifestyle choice. However, that was not the rainbow's original sign, and that meaning still holds very true today. No matter what life choices someone has made, they are not beyond God's saving grace. Whether they are lies, theft, adultery, or even murder, they can all be forgiven. Just as their was a judgment during the flood, it will come again for everyone.

I pray that whenever the rainbow is seen, in any context, that it will serve as a reminder of what is to come.

Sunday, June 2, 2019

Legacy or Lunacy

A couple weeks ago, my parents got away for a week of vacation. Since they usually cover the evenings, that means finding people to help watch me. Thankfully, I still have grandparents and relatives that are able to help.

For two evenings, dad's parents came to stay between my day nurse and night nurse nurse. Grandma usually comes first with grandpa arriving just in time for supper. Unfortunately, they are not able to move me around in bed. Therefore, wherever the nurse has me positioned when she leaves at 5:00 is where I stay. Thankfully, my grandparents are quite capable of putting the bed down and propping my head with pillows so I can do something.

The first evening they stayed, I wasn't laying very well and couldn't do much. Grandpa did enjoy watching me play Farming Simulator 19. He watched, and snored, while I worked in my virtual fields with virtual equipment.

On their second evening, I was left much better positioned. After I had been flat for over 3.5 hours, I had grandpa and grandma sit me up in bed again. They managed well and has become my usual routine, I started working on writing my book. Grandma inquired to my activity and I told her about this project I've been doing for nearly 18 months. She responded that she hopes to get to read it someday. A week later, when mom was at work, grandpa told her he hopes to get to read my book before he dies. It was a surprise revelation to her, and me.

In this past year-and-a-half, I have sometimes wondered why I am taking on this writing task. In some ways, I feel it to be my way of leaving a memory or legacy. I don't have kids and hardly anything to show for work that would leave an impression on anyone. I talk to a lot of students, both grade school and college, but I'm quite certain most forget about me within a week at the most. I know it's doubtful that anything will ever get published, let alone be something anyone other than relatives would buy. Knowing how life usually goes, it would most likely get looked at by outsiders as something to joke about.

I am now about to start 2007, so I am at least catching up to modern times. If anything ever comes from it or not, I'm thankful for the quad life God has given me.