Talking full Circle

Several years ago, a family in my church needed help with child care. My parents and I love kids and volunteered to help watch 2.5 yer-old Ray and baby James. As the years passed, these two became my parents' adoptive grand kids and I was sort of the odd uncle.

Children have a tendency to grow too quickly and the two youngsters soon turned into teens with less frequent visits. Ray is now a college senior with plans to graduate this spring with her degree in nursing. For some reason, she likes working with neurological disorders, especially spinal cord injuries. Therefore, we have had discussions on hospitals specializing in SCI.

Ever since Ray started college, I have been emailing various professors that work in the nursing department. I thought this would be a great opportunity to speak with nursing students and help Ray and her classmates. Since the campus is five hours away, my offer was to visit virtually at no cost.

As is typical, I didn't get any responses. In three years of emailing, I only heard back from one professor who said she wasn't the right person to ask. I asked who would be, but didn't get a reply. I didn't try this year as I figured it wouldn't work anyway. However, there are multiple ways to visit with students.

Ray contacted me shortly after starting school this fall and wondered if I would be willing to speak to the nursing student club she helps lead. She knew of my attempts to try to speak with a class, so this would be a great compromise. Friday was the day I virtually visited with the students and staff who were available.

My computer is setup for me to use most easily from bed. However, I wanted to be in my chair to look a little more professional and maybe answer wheelchair inquires. My caregiver moved my bed so I could get aligned better with my computer's camera. I'm usually a little short as well, but my chair's elevating seat feature came in handy to improve my positioning.

Unfortunately, the crowd was much smaller than anticipated with only three students (one of who was Ray) and one late joining professor. Nevertheless, I squeezed my 60-minute presentation into 45 and covered the basics and special nuances of persons living the quad life. Whether by many or by few, I'm always glad when I get to teach upcoming generations. The girl that I helped play Chutes & Ladders has now become a young woman helping me to fulfill both our passions.

One item I covered in my presentation was funding issues. On Thursday, I received a response about the appeal I submitted to restore my day-time funding. The type of decision I received cannot be appealed and therefore will not be heard. One option still remains, but I will see where God leads. This week looks to be busy again and with fair weather, so it should be a good time to finally get out of the house.

Chair Repair

It has been over two months since I got my new chair. In that time, and after three miles of driving, I have noticed areas that need work. This week, two technicians came from my chair provider to address some of the issues.

First, my caregiver and I noticed my legs were not sitting straight and my feet wouldn't lay flat. As long as I can remember, my legs have flopped out to the sides, like frog's legs. It's fine in bed, but it doesn't work when trying to sit. Therefore, I have had knee supports that keeps my legs from going out too far.

After some fairly significant adjusting of the supports, my legs were straight once again. Next, moving my foot rests up about an inch allowed my entire foot to lay flat and be supported. My caregiver and I were very pleased to see the improvement and my lower body aligned properly.

Another concern that my parents noticed was this chair's lack of a strap for chest restraint. I liked not needed another device to stay straight. However, I researched through my local law enforcement and we both discovered a chest restaurant is required for wheelchair users in vehicles. The solution is now a strap that can go over my front when needed, but easily left off as well. Unfortunately, not everything else could be adjusted.

When traveling, my mom and I noticed the chair wants to tip over when making right-hand turns. I explained the situation to the techs, but they had never heard of such an issue before. Looking at my van's straps for the chair, they thought it could be due to where I sit and that I can't be restrained from the side. The only suggestion was to only tilt fully when highway driving, and sit upright when in town. A visit to someone who does wheelchair restraints could also offer solutions, but that was all.

As time has passed, I've also noticed I'm not sitting as well as at first. My right arm seems to be elevated and just not sitting right at a good angle. Again, the techs were at a loss for further arm rest movement. Dad tried moving it Saturday, but I have yet to sit in the chair and try his change.

I had hoped to have all concerns fixed at this point and enjoy my new wheels. Unfortunately, it still has some challenges and is starting to get uncomfortable to sit in. I was looking forward to my first time preaching this spring and be able to get elevated for the crowd. Now, I'm beginning to wonder if my previous chair may be better suited. So far, nothing is scheduled, so I have time to adjust and consider. Such is the quad life.

Tomorrow, I'm also waiting to hear if my funding for nurses can be approved for February. I filed an appeal, but it will take time to decide on when to be heard. Until then, I continue to rely on God's timing and grace for my needs.

Cold Week

Weather in the Midwest can change dramatically from one day to the next, and even within a day. January started out with mild temps and then had a number of days in the 50's and even up to 60! Unfortunately, the saying goes that if you don't like the weather, it will change. Even if you do like it, change will come.

This week has been quite cold with lows below zero. Friday morning, my Amazon Echo reported a wind chill of -34. These are days when I'm thankful that I can stay in my warm home, under blankets, and not have to battle the cold. It has been a few weeks since I left the house, but I can still join in various activities virtually.

I'm not the only one living the quad life who hibernates for winter. Earlier this week, I was messaging with Beth, a friend in Ohio whose son Alex has similar needs to mine. He hasn't even been out of bed in several weeks, but he has an even harder time with temperature change than me.

Their family also has trouble with funding and caregivers, but much worse than me. Other than a few hours a week, they don't have any help. With just Beth and Alex, they do what they must to keep going. At night, Beth sleeps near to her son and has always woke up to any needs, until this week.

When using a ventilator, it really dries out your airway. To counteract this, different humidification systems exist to put moisture in the vent tubes. It works, but water eventually builds up in the circuits and needs emptied out. If left, it can block air from being received or dump water directly in your lungs requiring immediate suctioning. I had both situations happen a number of times in my regular vent years and know the feeling well.

A few nights ago, Alex had the situation where water needed emptied from his vent tubing. He did his regular routine to wake his mom, but she stayed asleep through several attempts. Alex enacted his emergency protocols by having his Amazon Echo call designated people that can help, but Beth woke up before further action was needed, but it served as an alarm to current problems.

I have a similar setup to Alex, but have thankfully never had to use it. Living at home is still generally safer than a care facility, but the shortage in nurses is not just a local problem. During these cold periods, I also think of elderly who stay in their homes. It can be days before they get checked on, and it can result in major health problems if they fall, or similar, and can't get help. 

Spring is about six weeks away and the hopeful warming trend with it. Getting out in the community helps to lighten spirits and remind the world we're still here.

Time Quickly Disappeared

The eighth commandment is "Do not steal." Most of us think about robbing an individual, a business, or something similar. These are correct thoughts, and the value of what is taken doesn't matter, it still breaks the command. Therefore, a pen or penny is theft just the same as taking a diamond ring or millions of dollars. However, there is something even more precious that we have been given and regular waste.

Time is a gift from God, but one that vanishes quickly. I have preached a few times on the importance of not stealing time by using it to sin or waste it in too much entertainment. For about the past month, I have been acting as a hypocrite.

In part, the fourth command says that six days you shall labor and rest one. That has changed in the new covenant, but it is more than I will cover in today's update. We are allowed time to rest, and it is necessary, but we need to be careful not to overdue it. 

At most, I only have about five hours a day that I'm upright and can be active. Therefore, I try to be diligent to only play games or upright leisure activities Sunday afternoons. However, since probably mid-December, I haven't had a lot of web work and make excuses to spend an hour 2-3 nights a week in entertainment. This may not seem like a lot of time, but it is a significant part of my day compared to total upright time. Early Monday evening, we received a call that brought time management to high importance.

Last October, my DHS case manager submitted my annual review to have funding for my day-time caregivers. I use a waiver, or exception, to go beyond the regular allotted amount in order to get a full day covered. Monday's phone call let us know that it was denied. Starting February 1, I'll lose a large chunk of what covers my day help.

Therefore, this week was partially spent in research and filing an appeal to the decision. It costs nearly three times the amount to have me in a care facility vs. living at home. Beyond that, without private insurance, my doctors, medications, monthly supplies, and so on would also be charged to the state. I'm looking at the financial strain as well as quality of life. The Olmstead decision by the Supreme Court in 1999 said that all accommodations must be made to live in the least restrictive environment.

It's possible I will have to speak before a judge at some point and plead my case for more funds. My parents can't regularly do more than they already are, but my breathing system is also incompatible with alarm systems in care facilities.

Living the quad life indeed has its challenges. This week's lesson is to make careful use of time as we may quickly lose it. As with everything, I trust in God's care and will look to His plan. This has been a difficult year so far and it looks like the trend will continue. 

Reading List

As long as we live, we continue to learn. A few days ago, we learned about another lose wire on my chair that wasn't plugged in properly. Once it was, everything worked well again. Thankfully, nobody had to come and make an unnecessary repair.

Books and reading in general are another great source of entertainment and education. In early 2025, I decided to record what books I read for the year. It ended up being a longer list than I expected.

• 52 Churches -February 17
• Mishandled -February 26
• A Call to Prayer -March 3
• There is Blessing in the Battle -March 12
• Christ-Centered Biblical Counseling -June 30
• God Said and it Was So -July 30
• Christ Triumphs Over Sin and Death -August 13
• Truth About Heaven -August 20
• Dinosaurs, Dragons, and the Bible -October 20
• Traced -November 24

In addition to these ten books, I also read a few magazines, booklets, and I'm about halfway through a book on counseling by Dr. John MacArthur. This list is also just of physical books. I have slowly been reading an electronic version of Foxes Book of Martyrs. Reading about how Christians were tortured and killed by the Catholic church isn't a very pleasant topic. I also find I get more easily distracted with e-books. I may doze off, but when I have a physical book in-front of me, I can't wonder off to anything else.

My schedule also makes it so that I typically can only read for a maximum of about two hours twice a week. Even that often gets interrupted by other commitments or knowing all I will do is doze off and stay on one page for 30 minutes.

The most important reading I do though is every morning, night, and afternoon. As I have for over 25 years, I continue to read the Bible daily. In the morning, I read an annual plan that goes through the full Bible in a year. Before bed, I alternate between two study Bibles and progress as time and text allows. Finally, I also read and study two chapters in the New Testament every day for a month.

Ecclesiastes 12:12 says, "But in addition to this, my son, be warned: the making of many books is endless, and much devotion to books is wearying to the flesh." Solomon concludes with verse 13, "The end of the matter, all that has been heard: fear God and keep His commandments, because this is the end of the matter for all mankind." 

Books are not short in supply, but we need to be sure whatever we read, it honors God and His creation. I don't know what my list will be for this year, but I look forward to continuing to learn and study the world God has made. 

Rocky Start to 2026

The year is now four days old and it has been an interesting start. After about a year of work, my new funding source for day-time hours started on January 1.

Unfortunately, mom and I still aren't certain how to document everything or even what is required. The majority of my daily cares weren't included in the list of needs, making us wonder how to record what my caregiver's do. Paperwork isn't regular reviewed by anyone, but needs to be easily available if or when my caregivers are audited. 

Illness has been going around central Iowa as well. My day help came Tuesday, but needed to have a slow day. I was fine with staying in bed to get work done, and she did pretty well. The slow day wasn't enough though and she called off Thursday and Friday. Therefore, I have yet to have day help this year that can use the non-existent charting. Thankfully, nights have been covered so that everyone can get sleep.

Since we didn't have help, I went along with my parents Friday to run errands around town. One of our stops was Walmart with a list of items in different areas of the store. Since getting my chair in late November, I have only been in my house and church. This was my first time in a more open area with space to roam.

My last two chairs, I selected what speed setting I wanted and it wouldn't change until I wanted to. I could adjust my speed by moving my chin control further in any direction. With this chair, I have to select one of four speed modes each time I stop and start. I can vary how much of that setting I use, but it's more of a challenge to quickly adjust between slow and higher speeds.

For the first time, I was able to select the fastest setting. The medium and faster medium had trouble keeping up with dad sometimes, so I gave it a try. With it being my first experience, I was very jerky in trying not to run over anyone and still keep caught up. The new joystick is much smaller than what I've had for the last 29 years and I need to learn very tiny adjustments. I have driven less than three miles so far, but I'm wondering if I have steady enough control of my chin to manage the small stick. The constant start and stop in the store used about 10% of my battery, which makes me uncertain about longer outdoor activities in the summer.

This morning, dad got me ready for church and went to get me up. He hit the button to move the control bar away, and nothing happened. Dad looked over the various wires and plugs, but couldn't find an obvious problem. I can't get in, or out, with the controls in place so I stayed home. I wonder if I'll be switching back to my previous chair this week. 

Whatever may come this year, I need to remember to look at God's plan for everything. Funding, caregivers, and my wheels may have their issues, but they aren't anything new in the quad life. Time will tell what comes with each aspect. Until then, I'm thankful to celebrate the beginning of another year and look forward to writing each week what happens.

Surprises for Christmas Week

Most Sunday evenings are a time for my family to relax. Dad usually finishes my afternoon cares around 4:30 and I sit upright in bed until 6:00. A week ago today, about 5:30, the three of us were in our own corners of the house doing our own entertainment options. Dad was near the front-door and thought he heard some noise outside and then the doorbell rang.

He opened the door to see a multitude of people from church that came for caroling. I vaguely heard dad talking to someone, but caught the phrase "go to Joel's room." I wasn't sure who was coming, but I closed the game I was playing and waited. Dad quickly came and promptly stuffed loose pillows in my closet and explained what was happening. We weren't sure if our attire was good for guests, but we didn't have time to change. As he directed people to my room, dad also scurried downstairs to tell mom so she could come up.

I first saw two young kids hesitantly walk down the hall and they were soon joined by a total of 35 people in my room and down the hall. My computer was still in-front of me blocking some view, so I explained to the people closest to me how to move everything. One teen told his mom he thought I had a cool setup.

For the next few minutes, the group sang a number of Christmas songs as I grinned and dad squeezed beside my bed. With the driveway full of cars, mom had a hard time getting upstairs, but she was eventually able to join us. Looking around at everyone, I recognized most of the faces, but had a few that I wasn't sure of their identity.

A few months ago, I posted how it felt like we had been forgotten by much of our church as only a small few checked in on us while we were gone for several weeks. This visit was a welcome change and one that my family won't forget for a while.

On Christmas Day, we attended church, came home for lunch, and had our own Christmas. Dad and I got a few model railroad items for each other. In order to setup a new controller, I can hear a steam engine running on the layout beneath my room as I write. I also received a much anticipated new video camera. The camera I had been using for YouTube updates died in late November, so I look forward to using it soon.

Finally, we were able to visit with grandma that afternoon. Thankfully, she is doing pretty well, but it's still hard to be living in a care facility. Dad's sister came the same time we were there, so we had an impromptu small family Christmas gathering.

It has been quite the year and I'm thankful God has brought through another change of calendars. I don't know what 2026 will bring in the quad life, but I know I can trust God's plan that will work for His glory.