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.

Merry Christmas in 2025

Many of us have memories of Christmas as children. They may be of certain gifts, trips, or time with family. I remember getting bounced down the steps to the basement of my mom's parent's house. Each of the grandkids had a stocking with an ever-expanding board with hooks.

I always wanted to play Santa and deliver presents from the tree. However, I could only use my manual chair to get to the basement. That meant one of my cousins pushed me around to deliver gifts to waiting laps. Eventually, a ramp was built and I could use my power chair as Christmas celebrations stayed upstairs.

On the other side of the family, everybody would squeeze into my grandparent's house in the country. As my cousins grew in size and number, we kept our same location. Adding on a front room helped, but I just had one area I could sit, turn around, and move about five feet. Before moving, I had to check for anyone crawling or toddling so I didn't crush anything.

Some years meant going to both sides of the family in one day. Other years, we may miss one side's celebration, or they would be spread out a few days. Driving between destinations in the snowy countryside, comments would frequently come about how busy late December was. Trying to get everywhere, get our own family celebration, and my care needs done, made for very busy days. However, mom would often be the voice of reason to enjoy the opportunity while we had it.

As years passed, changes started coming in location of the celebration and how many families could come. Instead of separate celebrations for Thanksgiving and Christmas, they were eventually combined into one Thankmas party. Then, as my grandparents departed to heavenly celebrations, more changes came to family gatherings.

I don't remember when our last full family gathering was on mom's side of the family. Since grandma's funeral in August of 2024, I haven't seen the majority of my cousins in person and don't expect to until the next funeral.

This year, my dad's family decided to delay our winter celebration until grandma's birthday in March. Therefore, for the first time in my life, my parents and I don't have any full family gatherings to attend for Christmas. We may visit with grandma, but that would be it for Christmas.

As mom said many years ago, a time would come when we would miss going to various gatherings. Having a calm Christmas is nice, but it does feel odd not to have an annual get together and see how my extended family has changed.

No matter what you have going on this year, remember the reason we celebrate Christmas. Give thanks to God for the gift of His Son and the gift of eternal life. Have a Merry Christmas and enjoy the family you still have around. 

Watching Time Pass

This week has been a lesson in how time passes. In some situations, it can go quickly, but I also watch the clock to see if it can move any faster.

On Monday afternoon, I received a call from the hospital to go over everything for surgery. It was the usual routine of going over my meds and medical history. However, the nurse on the phone became quickly confused. She asked if I would need help to pivot to transfer out of my chair and to bring the remote for my pacemaker. I helped clarify that I can't control anything below my shoulders and would need a lift or multiple people to help lift. My explanation made sense and that was all.

As requested, I arrived at the hospital at noon Thursday for a 2:00 surgery time. That was also the time snow and ice were predicted to arrive in Des Moines, so dad kindly went with my caregiver Sara and I. With him, I no longer needed a lift, but I did explain my DPS multiple times to various nurses and a few doctors.

I saw my regular ENT briefly as he said I would be his second procedure of the day, but the first had already been delayed due to OR availability. After watching 2:00 come and go, I finally saw him again a little after 4:00. I was thankful Sara and I could play games on our phones and watch dad's computer, but time still passed slowly.

Since it was a minor procedure, I was only lightly sedated for most of the process. As my ENT cleared out excess tissue from my trach area, he wondered how I had been breathing. Placing the trach button and further work went beyond local numbing and with a nod, my eyes closed in the OR and reopened in a recovery room. Thankfully, everything went well and was relatively simple. I'm very thankful to have a clear airway again suctioning is now easier. Snow and wind on the way home wasn't too bad, but we were thankful for dad's help and a little slower commute that usual. 

My neck feels pretty good, but it was sore if I did too much Friday. Therefore, I spaced out my regular web updates and watched familiar voices play games online. The place I watch them is called Twitch and it came up with a recap of my year. One screen showed how many hours I have spent watching people play. My top person was over 120 hours, with the next over 100. I would not have guessed these figures, but it demonstrated the difference in perception of time passage.

Whether you're living the quad life or not, be sure to always take time to spend in God's Word and come to Him. At some point, our time in this life will end and then go to eternity in either heaven or hell. The gift of eternal life with Christ is what we celebrate this Christmas, take ample time to reflect and spend with Him. 

Learning More and Preparing

It is the first weekend of December, and it's feeling like a repeat from last week. We received more snow yesterday and the night nurse wasn't able to come. I pray this doesn't become a trend until spring. Thankfully, this week was fairly calm and provided time for work and learning my chair.

When my chair was dropped off a few weeks ago, my caregiver and I checked if my feet would reach my bike petals. They did, and we left it at that. This week was my first time actually biking while sitting in my chair, and it took some trial and error.

I started using the FES bike in July 2015 with my Action Arrow. In August that year, I received my TDX SP and used it for every bike session since. Therefore, we expected to have a learning curve in using the new wheels.

First time biking

Thursday took nearly a full hour of adjusting electrode placement, testing wire reach, and seeing how to access connections. Getting the four electrodes on my glutes was the biggest challenge. We quickly discovered that the placement we used for the last decade won't work, but further on my hips did. Eventually, after some popping knuckles and wrists, my caregiver and I figured it out. Friday went more smoothly, but we still have a few areas to adjust.

Since early November, I have been putting drops in my trach button to try to open the plug at the end of it. They have helped some, but the month of use hasn't completely cleared it. In some positions, it's just as blocked as it always was. It is also making suctioning very difficult. The catheter can get through, but any junk it picks up gets scraped off by the flap at the end of the button. Friday night, my caregiver tried clearing my lungs twice, but wasn't successful. I was eventually able to clear it on my own, but that isn't always the case.

This coming Thursday, I am scheduled to have surgery to open up the trach stoma again. The last time I had surgery on my trach area was around third grade. I'm thankful it has been over 30 years since I needed more serious work on it, but it is still frustrating to need intervention. Since I have full feeling of my trach area, it will also be one of the very few procedures I've had that I will fill the aftermath. I don't expect it to be anything major, but still a different experience.

Even after 40 years of living the quad life, I learn new things. Heading out to Des Moines in December is also something I haven't done in many years. Whatever may come, I know God is in control and I look forward to my neck being fully open again as it should.

Snowy Weekend

The warm days we had earlier this month are gone and winter has arrived. Thanksgiving day was cool, but pretty good for late in November.

It was a rare occasion in that I actually went to someone else's house. My aunt and uncle invited us over for Thanksgiving, so we headed west after church. Their house does not have a level entrance, but a couple wooden boards and a metal plate allowed me in the front door. Since my steering isn't very smooth on my new chair, I opted to use my older seat with better control. I'm never real comfortable in someone else's home, I am afraid I'll hit something or not fit their tables. Thankfully, everything went well and we had our Thanksgiving meal with family.

Late Friday evening, snow started falling and went through most of the day Saturday. My Thursday night nurse was talking about coming early Friday to avoid the weather, but she ended up not coming either Friday or Saturday.

I have heard this winter is supposed to be cold and snowy. With more snow predicted tomorrow, it's starting to look like the predictions may be true. We never want my caregivers to put themself in danger by driving on bad roads, so we understand when they can't come. Even though we somewhat expect it when the weather turns bad, it still is a challenge to cover.

Since last week's entry, I have spent more time in my new wheels. I'm somewhat getting used to the differences, but we uncovered a potentially dangerous scenario I need to be careful to avoid.

When I travel, I normally tilt my chair back about as far as I can. Even for short trips, it's a good opportunity to shift my weight and seems safer if we got into an accident. With my new seating system, the entire seat raises up a few inches as I tilt, making my head close to the ceiling.

On my first trip outside the house, I did the same routine I always do. However, as the vehicle turned corners, my chair seemed to move and not feel very stable. Right-hand turns felt especially uncomfortable and I wondered about the seat's connections. On our final right turn, I asked mom to watch my wheels to confirm my suspensions. She said the right wheels came off the van floor about two inches. Therefore, it gets top heavy easily and has good potential to fall over. For my subsequent excursions, I hardly tilted and didn't notice any further trouble. I'm not sure if the problem can be fixed, which isn't ideal for trips more than a few minutes. 

Such are the challenges of the Quad Life. This was not an issue I thought about before this week, but one that is now at the top of my mind. This week looks cold and I plan to stay home, so that will allow more learning time at least. 

Giving Thanks for Progress

Once again, we have reached late November and will soon celebrate the official day to give thanks. Personally, I find the easiest thing to do in prayer is give God thanks for all He has provided. Without Him, we would have nothing, not even the air we breathe, heart beat, or life.

This year, I was thankful to be able to take a trip east to see friends at CHAMP Camp and visit the Creation Museum and Ark Encounter again. The mold in the hotel air conditioner wasn't fun, but it was a reminder to give thanks for times of good health and easy breathing.

A big item of progress happened Friday. I ordered my new wheelchair in May and first sat in it in late October. The chair company completed all the adjustments and brought it to my home. The first order of business was to do a pressure map of the new seat cushion.

Map from 2019 showing issues

Pressure mapping involves sitting on a thin pad full of sensors. It is then displayed on a computer or tablet and shows pressure areas. Light to medium blue is ideal with yellows and reds indicating problem areas, somewhat similar to a weather radar. It normally takes doctor's orders, scheduling an appointment, and traveling somewhere to get it done. This time, it was part of the chair setup and done right in my bedroom. If I had thought about it, I should have tested my bed mattress, but I didn't until well after the technician left. I was thankful it could be done and the new seat tested very well without any changes required.

Some button changes had been made since I last saw the chair, but they were soon adjusted and I had my first opportunity to drive. As I expected, the tiny joystick is much more sensitive than I'm used to and has very little range of movement. Therefore, the slightest change translates into a larger or jerkier movement than desired. As I navigated through my room and down the halls, I kept it in a low speed setting and managed not to hit anything, or anyone. Learning the different seat functions will also take time, but I'm thankful for the technology God has given us to accommodate fallen bodies in this world.

Friday was also fully covered by caregivers and allowed my parents to get away for a full day. Shortly after getting home, dad discovered my new chair is three inches longer than the one I've been using. This could make for a tight, if not impossible, fit for the tie downs in my van. Thankfully, alternate restraining systems do exist, but it would have to be researched and installed. As of this writing, I have yet to test getting in the van.

While more challenges come, the areas of thankfulness can outweigh them. I'm thankful for all the years I have been given and experience God's blessings. May you have a Happy Thanksgiving and see what God has done. 

Fall Illness has Begun

I am very blessed in that I rarely get sick. As temps get colder, illness usually increases and we head into cold and flu season. This week, I felt fine as I usually do. However, I can't say the same for my caregivers.

Last week Sunday, mom received a message from my night nurse that he was sick and would not be able to come. We hoped my other night nurse could cover, but we never heard from my agency. Therefore, it was another long night with short sleep for everyone. Monday night was covered, but Tuesday and Wednesday nights also went without help.

In addition to nights, days also had trouble with missing help. My caregiver for Thursday and Friday was also ill and unable to come. Therefore, Sunday through Friday had five shifts open out of a total of nine. Thankfully, my night nurse who was on extended medical leave is back and doing well.

Since we didn't have help Wednesday night, that meant mom and I would have slept in Thursday morning. However, dad was also very busy at work and had something that needed to get finished. Therefore, I got up a little earlier than usual, did a hurried morning routine, and I went to work with him. In our rush to get out the door, we even skipped my usual protein shake for breakfast. By the time we got to lunch, I was getting hungry.

I've been with dad at work a few times. As a commercial printing facility, it's interesting watching folded papers get stacked, stapled, and trimmed to form an information booklet. I try to watch, but stay out of the way as well. For several minutes, I parked by the one nearby window and let the sun warm my face. It felt good, but I was also next to a machine's noisy blower. I battled for a while, good feeling sun vs. noise, but eventually my ringing ears won and I relocated.

Friday and Saturday were very nice days for mid-November in Iowa. Mostly sunny with highs near, and above, 70 was a treat. The two days were spent juggling witch parent stayed with me while the three of us tried to complete our various tasks. Unfortunately, the yard work dad did Friday was hardly noticeable Saturday as leaves kept dropping from trees.

These weeks are the more challenging times in the quad life. We all missed items we had hoped to do, but also made accomplishments. My trach button still feels very plugged at the end as well. The schedule meant my medicine was applied at odd times, but I doubt that would make much difference. I'm looking forward to this new week and hope it will be back to a more regular schedule.