That Sinking Feeling

I've heard stories about people dreaming they're falling into a bottomless pit and then wake up and fall out of bed. This week didn't have any strange dreams, but did have a sinking feeling in the middle of the night.

Central Iowa started September with a heat wave. All week was under a heat advisory with highs in low to mid 90's and night-time lows staying in the 70's. About 1:20 Wednesday morning, I was actually fully asleep for once. At that time, the electricity went off and instantly stopped everything using electricity.

My night nurse noticed as the lamp beside him turned off and my room went silent from various devices that are always running. Something also alerted my parents sleeping on the other end of the house. I was blissfully unaware of any change until my dad and caregiver were chatting a few feet away from me and woke me up.

Using my diaphragm pacemaker, I can breathe fine without needing electricity. However, the air mattress I sleep on does require power to stay inflated. As the two men talked and I figured out what was going on, dad would poke my bed to check on its status. With one eye buried in a pillow, I peered through my other eye to watch the action.

Dad or my caregiver had the emergency light sitting on my dresser and I noticed the side of the mattress was slowly getting higher in relation to my viewpoint. As the bed slowly consumed me, I heard dad say they would wait 5-10 minutes to see if the power turned back on and then see what to do. I had yet to say anything or acknowledge I was awake, but started counting. I receive 15 breathes per minute, or 75 breathes in five minutes. Starting at 75, I counted down and waited to get to zero.

Thankfully, with underground power lines, the electricity in my house has been very stable for at least 20-25 years. We had theorized plans on what to do if the power went out, but never tested them. Soon enough, my breath count reached zero and I chimed in on the ongoing conversation that we should work on getting my mattress hooked up to power. It was continuing to ingest me at a slow rate, but I definitely was going down. 

Dad and caregiver set off on our theory of connecting an electrical inverter to my van and then plugging in my mattress via an extension cord. Apparently the first attempt of using the cigarette lighter didn't work, but the two then connected the device directly to the battery. After figuring out cord configuration, my bed soon hummed back to life and slowly returned me from the depths to which I had fallen. One device was now functioning, but that was all.

Without air conditioning, my room stayed around 77°-78° in the warm night. Staying without a sheet, or anything else, on me allowed my temp not to clime too high. Thankfully, power returned around 5:00 and the van battery lasted long enough to keep me aired up. I never heard what caused the outage, but was thankful the plan worked. I also reviewed in my head how to tell my caregivers to setup the power source if my parents aren't around.

The quad life indeed has unexpected times and events. It is a reminder to be prepared, but also trust in God at all times. 

Supply Hunt and Overload

In late high school, I took over ordering my medical supplies I use every month. I have a few times that certain items are hard to get, but a little research and brand change has resolved the problem. Since the start of 2026, I have had trouble getting one item, sterile gloves. In nearly 30 years of ordering supplies, this has been the hardest challenge, and I'm not sure about the solution.

When I came home from the hospital in 1985, I was one of the first home vent patients in central Iowa. The small company that serviced my vents also supplied my equipment. They have changed names and size over the decades, but I have stayed with them. There was a long period of time when I just said "Hello" and the person taking calls knew all my information and made ordering easy. It isn't quite that friendly any more, but close.

Several studies have tried to say there are no differences in using a "clean" glove vs. a sterile one for the procedures I use them for. However, these same researchers also believe multiple infections per year is normal. I tend to decrease that number quite a bit and therefore will always recommend, and use, sterile gloves.

My supply agency said they were trying to find a way to get gloves, and have insurance cover them. However, all of January and most of February produced no results. Therefore, I started calling at least once a week to "check on progress." I learned years ago that you sometimes need to be more annoying to get anything accomplished.

This routine produced results in that the agency found they could get kits that contained gloves. Depending on the procedure intended, these kits also include many superfluous items I don't need. However, this was the only solution they could found. One of the procedures I do that uses sterile gloves is performed four times a day, or an average of 120 times a month. The supplier would send that many per month as well as 30 more for other needs.

On Tuesday, my day caregiver was sick, so dad and I took off in the afternoon to visit his mother. When we returned, we were greeted with six large boxes on the driveway. They were moved into the garage, but this was one shipment of new kits. Not only are they a lot of bulk to ship, finding storage in my supply closet is another issue.

Looking online, I easily found the gloves I need in a convenient box of 100 through multiple retailers. I ordered one, but insurance only pays through designated suppliers. Therefore, a few solutions have been found, but it's a question of which is worse. Do I pay out-of-pocket for convenience, or have a multitude of boxes every month?

Living the quad life does indeed make for interesting challenges. I can only imagine a "normal" life of a 44-year-old bachelor would be much less exciting. Whatever the case or form, I'm thankful for God's blessings and the ability to even have such issues. 

Priorities

Every four years, Americans get the opportunity to vote for the next president, and other political leaders. For the last 2-3 elections, it seems each one has been the most pivotal moment for our country. They also have a way of making friends and neighbors become bitterly divided against each other.

Depending on your views and life circumstances, most people have different priorities. For some, it can be healthcare, others may see the economy, military, environment, or anything number of issues as important. Ever since I registered to vote, I have been registered as an independent. Therefore, I don't stand with a particular party, but evaluate each candidate on their priorities.

As a Christian, I base my thinking and decisions on the Bible and what God has said. Therefore, one top priority is protecting life at all stages, starting from conception. Unfortunately, the Democratic party has become very strong on supporting, and expanding, the murder of children through abortion. That alone cuts out votes for that party's candidates, but the Republican party is also becoming soft on this issue. This makes the line on one priority slightly blurred, but it's still pretty defined, for this year at least.

Most of my caregivers and I talk very little, if at all, about politics. It's not a subject I give a lot of attention and prefer it that way. Unfortunately, one caregiver, and especially her husband, are heavily into advocating for one party and the topic frequently comes up on her shift. It gets very uncomfortable to have someone be adamant for a candidate that goes against everything Christianity cherishes, while denying plain facts. In these days, I pray for peace, guidance, and clear thought to articulate views and back them up with information.

After Tuesday, America should know who has been chosen for president for the next four years. Whatever the result, we need to remember that God is King of kings and Lord of lords and all nations and leaders are subject to Him. Living the quad life allows me to interact with a variety of people and I pray that my influence, on any topic, points to Christ first.

Recovery Week

Another week has gone and I'm finally feeling back to normal, primarily anyway.

As I wrote in the final entry for my hospital stay, I was starting to improve. The first four days home felt like a struggle to do anything for more than 15 minutes without feeling completely exhausted. In the last ten days, I think I've taken more purposeful naps than I have in the last ten years. What bothered me most, was knowing I had work to do.

Most of the web work I do doesn't have a big impact on business and waiting an extra week, or more, for an update won't be a major problem. Yes, it means people won't get to preview their church bulletins early or review the latest sermon as quickly, but they will come eventually. Of course this round of hospital stays couldn't have been worse for one client.

A few weeks prior to my medical hiatus, I had been working with a long-term client and a web designer to get their new site online. We had communication trouble at first, as well as some challenges in getting logistics figured out, but the client's site finally got moved for the world to see. The next day was when I had my first ER visit.

My friend John has access to my email and business information and was monitoring everything for me. Unfortunately, a problem came up that potential customers couldn't contact my client due to a form not working. In my head, I knew exactly what needed to be done, but it has been several years since John helped with any "hands on" web development. Trying to explain the necessary steps with little voice didn't go well. It was the first thing I forced myself to do when I got home, but one of the steps didn't work as usual. The issue was finally resolved Wednesday, but I feel bad it was delayed over a week because of my health.

Part of hospital stays also include getting blood tests and an I.V. However, I'm a very hard stick and my right arm looked like I had lost a fight when I got home due to all the bruising. Thankfully, it has also returned to normal and doesn't look like any permanent damage. 

Now, I need to find a way for my parents to get time to recover. They had hoped to have a day on their own Friday, but my day caregiver was only able to do half her shift. Such is the story of the quad life family, but I pray this new week will be back to normal routine.

Vacation Week

I have said before, I am primarily a home body. I am perfectly content to stay around the house or go to attractions and events nearby that don't require much travel. I do enjoy seeing new areas, but hotels are hard for me to use and managing caregivers while away is challenging. Therefore, I haven't been anywhere overnight since my last year at CHAMP Camp in 2019. My parents, however, do like going out on excursions.

This past week was spring break for many schools in the area. My college intern caregiver, Brenda, wasn't planning to do anything during break and volunteered to stay with me in the evenings if my parents wanted to get out. It may have taken 2-3 seconds for them to happily say yes, so my parents went out during spring break.

They left early Tuesday morning, before I got up, and returned Saturday afternoon less than 30 minutes before Brenda was scheduled to leave. That meant Brenda worked four evenings in a row as well as the regular ten-hour shift. This allowed me to have 24-hour care without my parents for over four-and-a-half days.

It has been a busy time for me in various projects, which means I didn't do much out of the ordinary. However, it did allow me to bike five days in a row and be on "my own" again. Mom and I planned meals before she left so that Brenda and I mainly just needed to thaw frozen meat a few times and put together whatever was planned. Just the two of us didn't eat much, which made for plenty of leftover choices for Saturday night.

Brenda will be graduating soon and plans to return to her home in Arizona to continue her education. Therefore, these extended times of freedom will soon be gone again. I'm thankful for the time we do get and the relaxation it gives to everyone.

It looks like another busy week ahead which started by preaching this morning. The quad life continues through every day and I'm thankful for the blessings God has given.

Relaxing Busy Week?

The first full week of July is now complete and it was a good start to the month. As with every turn of the calendar, I prepared new virtual paperwork, calculated my hours worked, and reported my income. June was blessed with about 10 hours of work over the 30 days and July may be around the same. It also helped that I didn't have any scheduled outings and could stay home, bike, and take care of other needs more easily. This coming week does not look the same though.

After a few months' of planning, my parents actually get to go on a trip. All my hours are covered with caregivers and they can do their own thing. It's rather evident the break is needed as well. On Saturday, dad finished some of my personal cares and, as usual, went to clean everything up. However, he forgot to return and set me up with the computer and replace my protective pillow between my arm and DPS port. When I heard him start vacuuming as I laid waiting in bed, I was able to get mom's attention while she could hear me.

With my parents away, I was looking forward to a calm week with the house to myself. However, I looked at the calendar more carefully. I realized I have two days with doctor's appointments and two more that are full with virtual meetings. Therefore, my free week will actually be just one day that doesn't have scheduled activities. At least with an evening caregiver, I'll be able to get in my chair and bike more often.

On Facebook, I'm friends with other quadriplegics and their families. One is a mother and her 23-year-old son who has the same care needs as me, plus further challenges. For the first time in 17 years, they recently started receiving nursing care for four hours a day a couple days a week. This isn't an uncommon situation unfortunately and in this case, mom is also having extreme pain and can't get relief for herself.

I'm very thankful God has blessed my family and I with so much help. I pray that all those living the quad life can get more help, and that caregivers can get relief. As I go through another active week, I will also give thanks for everything God has allowed me to do.

Finding Supplies

I have posted a few times about monthly supplies. Every day, I use various items in order to keep my lungs clear, restroom needs, and more. While it usually goes well, this past week and month have been an extra challenge.

After ordering a new trach in December, it finally came on April 13. When I finally had time to look at it, something didn't appear right. I waited until one of my more mechanical minded caregivers came, and we saw that the new device didn't have the ability to use a blocker to seal off the trach (so I breathe my nose) or anything else. It was the right size, but that's all that was correct and is otherwise useless to me. Therefore, it's back to the doctor for corrected orders and try again. Hopefully it won't take until August or September to get another one.

On Wednesday, I asked my caregiver to check supplies to see what I needed to order. When she finished, everything was about what I expected, except one item. She only found ten suction catheters remaining. I knew I had ordered a box of 50 in March and had used several since then, but not that much. My caregiver, and the next two, searched everywhere, but couldn't find more. The paperwork from March said it was ordered and shipped, but not we couldn't see evidence of it. Friday night, the caregiver came who had unpacked the boxes last month. She did not remember ever seeing a box of suction catheters come, even though they had been charged to my insurance.

With this result, I'll make sure to have everyone use the system of marking off what is received and if done at night to also tell me. I ordered supplies Wednesday and everything was received Friday, except suction catheters. One of my first calls on Monday will be to check on their status and see where they are and expected time of arrival. I will also hope I don't need suctioned a lot until I can get more, or I'll need to try to see if I can get any from hospitals.

Such is the quad life sometimes. I also had trouble with getting medication refills this week, but that has now been resolved. Hopefully everything this week will get resolved without an issue. I am thankful such supplies are available though and they help to maintain health.

Far Reach Preaching

It is mid-April and Iowa's weather can't decide what season we're in. Last week had several days with temps in the upper 70's and low 80's. It felt great to get outside in the sun and feel the warmth on my face again. Today, it seems like summer has past with winter returned. It was predicted to be a mix of rain and snow with temps ranging from 34°-42°. Of course, today is the day I also went out to preach.

Several congregations in my area are without pastors and are utilizing pulpit supply, like me. However, so far at least, I have only been asked for two nearby churches this year. Today, I traveled to eastern Iowa near the town of Iowa City. It's a new community for me to visit and the congregation is also new, a Chinese church.

I received my license to exhort, or substitute preach, in late 2017. Since then, I have had the opportunity to serve with a number of different congregations. The farthest I have traveled to preach was in October 2018 when I went to a pastor friend's church near Louisville, KY. That venture took several months to plan and also included a visit to the Ark Encounter. Today's activities didn't take that long to decide, but did take thought.

Whenever I agree to help a congregation, I consult with my parents first. Since they need to do the extra work of getting me dressed up more than usual and driving to an unfamiliar location, I want them to have opportunity to say yes or no. In today's scenario, it meant driving over 90 miles one way before getting to the facility to setup what I need. Thankfully, the English version of service didn't start until late morning and allowed us travel time.

I'm very thankful for opportunities to get to serve different congregations and preach God's Word. I am also thankful for willing parents to help me with these ventures, but I still wish I didn't need to make their Sunday busier than regular. It is part of the quad life that is sometimes hard, but it is a blessing when everything works.

Less Noise or More?

In 1993, my parents built the house where we now live. Our first home had steps to every floor and laundry in the basement. When they planned our new house, it would have all level entrances with the laundry room next to mine for easy access. That means, the washer and dryer are just an insulated wall away from me.

After over 25 years of hearing laundry almost six-days a week, I've become very familiar with the sounds and cycles of the machines. Sometime around the late '90's, mom got a new matching pair washer and dryer. Unfortunately, the machines made by Maytag were very problematic and quietly were replaced by the company. We must have missed that notification, because ours are still running. A very large part of that is due to dad working on them and replacing parts.

For about a year, the washing machine has been getting much noisier than usual. After ordering some gears, dad determined to work on the washer and try to get it to last longer and be a nice neighbor. Yesterday, he was able to start on his project and see what was going on inside. Before starting though, mom did a couple quick laundry loads just in case.

In the room next door, I could easily hear a lot of loud banging and clanging as dad worked to get old, rusty gears off and new ones on. The pounding echoed off the laundry room's tile floor and started making my ears hurt. I imagined the sound would be worse for dad and wondered if some ear protection might be good for working in a confined space. I guess I was too late as the suggestion went in one ear and out the other and he said it was fine. Unfortunately, the laundry revitalization project didn't always go quite as planned and required frequent consultation from YouTube.

I'm thankful God has blessed me with parents that have the skills for helping me live the quad life. Dad's mechanical abilities have prolonged my equipment much longer than expected and enabled me to be active and serving God in various roles. I'm not sure if the hammer noise will result in less laundry sounds, but that will be determined in the week ahead! Have a great start to February and getting closer to spring.

Construction Day

The street in front of my house has been slowly deteriorating the last few years and had become rough to drive on. Two weeks ago, equipment started appearing outside tearing up the concrete. A day after work started, a notice was put on the front door advising on street repair beginning in a few days.

Judging by other road work around town, I imagined it would take all summer for the project to be finished. However, watching out the front windows on my bike trips, I have watched concrete get broken up and loaded into dump trucks. The last few days, new cement was laid, cut, and now looks complete. I'm guessing within a day or maybe two, it will be open again.

Watching the work literally outside my front door has been interesting. However, an excavator swinging cement chunks over our yard left a few deposits. Cutting new cement also bathed the yard and sidewalk with a layer of dust. Dad has been diligently cleaning everything so mom and I don't get dirty wheels and he doesn't hit rocks with the lawn mower.

This is the second year in a row dad and I have been home for Father's Day and not out at CHAMP Camp. I would like to be able to give him a day off, but it's not really possible. With no day help on weekends, he is the only one that can do my cares and the day feels pretty similar to any other.

Through all the years, I am thankful for all the blessings God has given me through dad. We have one Father, in heaven, who uses people He has placed in our lives just for the right purpose. Many of the campers, and now adults, with severe medical needs like mine have only one parent that stays around, if any do stay. Most often, it is the dad that leaves and mom gets the full responsibility of caregiver and provider.

On this day designated for dads, I'm thankful for the example mine has given. I know I can depend on him as a one-person mechanic for the van, bed, wheelchair, and pretty well everything I use. However, he also looks to God first and lets me drag him along to different churches I'm asked to preach at and hears some of my recycled sermons I use for first-time visits. I don't know what the week ahead will bring, but I can be sure dad will come home after 10-12 hours at work and continue to be someone mom and I can depend on.

Finally a Week Alone

With the world shut down last year, very few vacations were made by anyone. It has been getting increasingly difficult for my parents to get away anyway, and they weren't able to go on any of their regular trips. The year is half complete, but they were able to leave last week Sunday afternoon and returned yesterday evening.

The challenge for my parents is finding enough coverage for me when they normally are responsible. Five hours every evening and weekend days are hard to fill for several days in a row. However, for this week, one caregiver agreed to do three nights, my aunt and uncle two nights, grandmother and aunt one night, and another occasional helper Saturday evening. It's a precarious house of cards, but the plan allowed them to be free of the house.

Sunday and Monday evenings were my aunt and uncle for three hours, and one of my older, retired, helpers was going to cover the remaining two hours. Unfortunately, she was sick, and unable to come, but my relatives were okay with staying longer and my day helper Sara covered one of the two-hour slots.

It was a great weather week in Iowa. Part of my household chores was watering flowers and tomato plants in various locations. I made sure they had good drinks and monitored the plants on the deck for at least 30 minutes a day. It meant sitting in the sun and enjoying the outdoors, but I was willing to make the effort.

Living as a bachelor, I tried a few new, and old, recipes for supper and found another option I think my parents would also like. Saturday evening came, and the scheduled caregiver didn't come at her expected time. Calling her, I discovered she wasn't aware she had been scheduled and was already busy with something else. Sara had already been with me for ten hours, but my helper that was feeling ill early in the week was well enough to come and sit with me until my parents returned.

In the quad life, some days get challenging and I have to quickly adapt and come up with solutions. I'm thankful my parents could get away again as they enjoy. The caregiver that helped three evenings is scheduled for surgery in a few days and won't be available again for a few months. Therefore, if they didn't go this past week, my parents may not have been able to go at all.

Now that everything has returned to normal, it's time to get back to other projects. However, those will be saved for future entries.

School to Staying Home

Tuesday morning was my final grade school visit for the year. The students were four days away from being done for the year. As usual, I arrived during recess to an empty room and had time to look around a bit. The day's schedule had me in the morning and a class party in the afternoon. Exploring my

surroundings further, I spotted a large bag of M&Ms propped against a bag of microwave popcorn. I started to wonder if I could prolong my segment of the day so I could join in the festivities.

Ten minutes after I came, the combined 3rd and 4th grade class got off from break and I met the new, to me, instructor. The total class size consisted of eight kids, four per grade. With the small class size and basically as much time as I wanted, I tried adding a new lesson. In addition to having the kids write by mouth, like me, I also had them try writing by foot. It helped demonstrate other disabilities, such as not having arms, and was fun for everyone. The students concluded mouth writing was easier than feet, which was opposite my prediction.

When my caregiver and I got home, we were greeted with a note on the door into the house. While away, my parents got tested for Covid, with mom coming back positive and dad negative. She has suspected something was wrong a few days earlier and as a precaution, had stayed away from me. Since the positive test, mom has been in quarantine in the basement until ten days have passed.

Therefore, it has been dad running the house and helping mom and I on his own. Mom has been directing supper items from her post in the basement and giving directions on how to make the dish. It has looked like dad running around like a masked headless chicken. During the day, I have tried to have my caregivers help where they can to decrease the work load.

Thankfully, I have felt fine and not shown any symptoms of having caught it. For precaution, I will be starting to take a couple extra supplements, zinc and vitamin D, that are supposed to help boost the immune system.

I'm thankful for the blessings of health God has given me in the quad life. I look forward to when mom can be released from her quarantine, but am thankful she doesn't appear to have a severe case. This week will primarily be spent at home, but I hope the sun will come out and allow for time on the deck.

Ballot or Bust

The first year I was eligible to vote was 2000. I had just started college and had heard about absentee voting. It would allow me to cast my ballot without having to drive an hour home. I have voted with this method every other year since then, but a change might be coming.

With absentee voting, I can simply fill out my choices in the comfort of my own home. If a choice comes up I didn't except, then I look up the needed information to make an informed vote. In school, I always told someone what to write for my test answers. It was much faster than trying to write myself in the allotted time. I can imagine voting in person would be the same, and doesn't exactly sound very private.

This year, most people have likely heard about the different voting options. In order to decrease crowds at voting booths, an option of mail-in ballots are being offered, as well as absentee voting. However, an increasing number of reports are saying that many mail-in ballots are being discarded, especially if they are for a certain candidate.

As usual, I requested my absentee ballot and mailed my completed form with the needed information. A few weeks later, an envelope arrived saying it was ballot information, but about 25% of it had been torn up. It was in a bag from the post office saying they care about our mail.

Throughout my life, I have received a fair amount of mail; insurance information, birthday cards, bills, junk mail, and everything else have arrived safely. Of all the letters to get eaten by a mail sorting machine, why was it this one? Looking closer, I could see it was a generic address that could go to any resident at my house. The chewed up envelope was for the problematic mail-in ballot request and not my absentee ballot, I think.

I filled out another request form, but I'll wait and see what I get. As I wrote two weeks ago, this is another critical election that may have major consequences. In order to make sure my vote is taken, and accurately recorded, I may venture into in-person voting this year. That in itself could be an adventure, but so is much of the quad life.

Lately, I have concluded many of these entries with relying on God and His control. This is another occasion of the same, as is every part of life.

Printing a Button

For 30 years, I used a tracheostomy (trach) to connect to my ventilator and help access my lungs to clear them out. However, I had to use a special size that required some work when I ordered new ones. Eventually though, it always worked out and I got what I needed. In 2015, I switched to a trach button and looked forward to easier replacement parts. Unfortunately, that didn't last very long.

Just like my trach, the button has two pieces. An outer sleeve that always stays in my throat and a button, or vent adapter, that slips into it. The button completely seals off the hole in my throat so I breathe through my nose and mouth. It can get dirty at times, so I change the button once a week. I had a set of three, so I could have one in use and two for cleaning and backup.

Somehow, one of the three went missing at some point. I'm guessing it was during one of my camp trips that it may have been left behind, but it was never found. I wasn't comfortable with having just one extra, and went to order another one. In that process, my equipment company learned the button I use was no longer available, and hadn't been for about a year. That was over a year ago, and I have been searching for a solution ever since.

The button is nothing other than a block of plastic molded in the proper shape. I wondered if a 3D printer could be a solution, but wasn't sure where to look. I brought up the problem with my ENT last month and he knew someone that had made printed solutions for him before. Over the next few days, I released my one spare plug to a nurse I had barely met for her college age sons to measure and print. It was quickly returned to me, and I waited for the results.

After several email exchanges, the final product was in my position. Three new blue plugs to test with my external sleeve. This week, my nurse and I tried the new buttons in my spare outer sleeves. Two of them fit well, but one didn't. The printer couldn't quite get them smooth, but they look like they should work. As of this writing though, I haven't tried them in my neck. That may come as a future update when I feel adventurous.

I'm thankful for God's provisions throughout the life He has given me. Living the quad life has its challenges, but at least it means few days are boring.

Father's Day 2020

In May, we observed Mother's Day while being quarantined at home. Restrictions have mostly been lifted since then, at least in Iowa, but we will still be staying at the house for this holiday.

Most years, I am at camp on Father's Day and it goes by with little notice. At camp, and weekend days, dad is responsible for doing most of my daily cares. This year, we are at least in the state, but I can't really give him much of a break unfortunately.

For all my life, and especially since starting the quad life, I have been very dependent on dad for help. Through his employer, he has given insurance that allows me to stay home as well as provide financial support for my family. When a nurse calls off sick or due to weather, he is the one that does whatever physical care I need and gets little sleep, along with mom. The last few months have added extra tasks to him as well.

Normally, I track my own needs for basic supplies such as toothpaste, paper towels, etc. When I'm getting low, or run out of something, my caregiver and I go to the store and purchase what I need. However, I haven't been shopping since at least February, if not earlier. Mom also regularly gets groceries and similar items on her own, although dad does sometimes help with this. Now, with the pandemic, dad has been the one to brave the stores for all of us. I give my list along with my parents and he goes out, with a mask, attempting to avoid close contact with other people. It has become part of the routine now, and one I don't see changing soon unfortunately.

Jesus said in Matthew 23:9 to not call anyone on earth father, for we have one Father who is in heaven. A full explanation could take another post, but that is why I generally just use the term dad. No matter the name, I easily see an example of our heavenly Father in my dad. Just as God provides for us all our needs, dad does all he can to provide for mom and I. It hasn't always been easy, especially the last few months, but dad keeps working as he can.

This week, be sure to thank our earthly parents for all they have done, either passed or present. Also remember look to our Father in heaven who has provided us a way to be reconciled to Him through His son, Jesus.

Short Soggy Hair

After 12 weeks of waiting, I finally was able to get my hair cut this week. It felt good to finally get it cut, but the outing ended up being more of a challenge than expected.

The last few weeks have been wet in central Iowa with storms and rain a nearly daily event. I was concerned it would require me to reschedule, but Thursday morning looked okay. Therefore, my caregiver Sara and I arrived at my barber a few minutes before my scheduled time. We observed all the requirements of mask wearing and everything else and got the job finished.

When we were done, it wasn't raining and although overcast, the sky didn't look very threatening. Directly across the street from where I get me hair done is a small bakery that has treats my mother enjoys. Since she has been extra busy helping me these last few months, I thought I would stop in and get some for her, and me as well.

Sara and I were the only customers in the store, so it was easy to social distance. As we headed to the door with fresh bakery items, we saw it had started raining. The umbrella was across the street in the van though and the rain was too much for me to try to drive through. Sara went to go get the rain protector and return to get me.

She was maybe gone for a minute, but in that time the steady rain increased to a heavy torrent with strong wind. Sara returned holding the umbrella sideways and wearing a very damp shirt. Even though signs said we weren't allowed to use the bakery's seating, we sat and waited for the rain to decrease.

Several minutes later, it looked like we had a break and the downpour relented enough to allow me to get in the van. As we left, strolled 20 feet, and crossed the street, the small monsoon returned and we abandoned the idea of trying to get loaded and took shelter under a small overhang eight feet away from our destination.

More time passed, and Sara managed to get me in the van during a small decrease in the torrent. However, I was now fairly wet and Sara looked like she took a shower fully dressed. Driving the mile toward home, the rain completely stopped about halfway in the trip. Looking at the streets, we could see little evidence of the tropical storm we had just left.

Sometimes, living the quad life leads to interesting experiences that most people hardly notice. Sara spent quite a bit of time drying out the van, my wheelchair, me, and finally changing herself into dry clothes. This has been a year of unforgettable experiences, but I hope my next hair appointment is more subdued.

Mother's Day at Home

Every year, we set aside a special day to celebrate mothers. These are the special people God used to form our bodies, then help train us how to get along in this fallen world. Looking back at previous years, most family traditions are similar. Dad takes responsibility for meals, hopefully, and mom gets to have time to enjoy her favorite activities. This year, it looks a little different.

With the threat of coronavirus, most people have been staying at home. That means no going out to get mom flowers, candy, or a card to help commemorate the day. I have seen a few commercials recently advertising jewelry for Mother's Day, but I'm guessing it won't be a popular gift with many people off from work. Since many moms have been stuck at home with their children all day for two months, some may just want to get away from their offspring.

For my mother, I had to resort to sending a virtual card to her email. She and dad have been braving the stores to get supplies I usually acquire on my own. Somehow, having them pick out and purchase a card for me to just sign didn't quite sound right.

Again this year, I am reminded how blessed I am to have my mother. She normally works two days a week doing book work at dad's family's grain elevator. However, it is a common communal spot for farmers to sit around drinking coffee, solving (and possibly aiding) the world's problems. In order to help stay away from people and virus exposure, mom has voluntarily stayed home since March.

With grocery runs, and supplies, limited mom has also managed very well to keep the three of us well fed with healthy meals. She also continues to keep track of my caregivers' hours every week along with running the house.

Mother's Day 2020 will not include pictures of going out or getting together with grandmothers. Many families are liking meeting with their mothers virtually this year, but it still counts as celebrating. Thank you mom for everything you do and rolling with the ever-changing flow. Hopefully next year will allow for an increase in festivities for this special day.

Modeling Bug

A few weeks ago, I made a video about how I do model railroading with my mouth stick. Unfortunately, it somewhat started an itch that I can't scratch.

I have enjoyed trains as long as I can remember and part of the fun is doing model trains. It's to get out by the tracks and go railfanning (watching trains), but weather doesn't always allow it. Therefore, working with small versions of them is the next best thing.

In junior high, my English teacher was also a rail enthusiast. He and I went out to watch trains several times in the summer, but he also formed a train club. A few other boys in my class were in it and we would spend time after school on Fridays putting together model trains that we could beg from our parents.

Mr. Muether was an excellent teacher and he did a great job of making it so I could interact with my classmates more and get to be an early teen. Some of the club's field trips, and rail camping, are fresh in my mind nearly 25 years after they happened.

Dad and I eventually built a train layout in our basement, just below my bedroom. He got the table top made, foam laid down, and tracks arranged with hills and curves. I don't remember how long that took, but the layout hasn't really progressed beyond that now for well over ten years.

Unfortunately, life can get in the way of things you enjoy and would like to do. With dad's busy work schedule and my very limited time up, we have extremely little time to give to our hobby. This current quarantine situation hasn't helped either. I could be in my chair likely by the layout right now instead of writing this. However, with churches doing online services, I have had a busy week helping organize and needed my sitting time to get work done.

Since making the video, I have been watching more model train videos and "window" shopping for items I like online. It's part of living a busy quad life and being sure to help others first. This week, and the next, look like they will still be at home. Maybe I'll get to scratch the modeling itch yet, but time will tell. I'm thankful to be safe at home and healthy and able to stay busy.

Trusting in 2020

Living the quad life, I have to have a lot of trust in those that help me with my every day activities. That's especially true when it comes to doing anything with my breathing.

My diaphragm pacemaker has a port on the right side of my chest. A small plastic bracket sits securely in a dressing that's near my ribs. Unfortunately, it gets bumped on occasion and everything pops out of place. For my regular caregivers, most can get it back in place within a few seconds. However, my new night assistant has accidentally pulled it out three times this month already.

In order to get the plastic bracket in place, the wire for my pacemaker needs to be unplugged. Therefore, I don't get stimulated to breathe during this process. There is a bit of a trick to getting it back in place, and he is learning quickly, but it does still take a couple minutes. I am able to somewhat breathe on my own, but winter congestion makes it a challenge and during these learning experiences, I need to trust God's hand through my caregiver.

On Thursday, I needed to pick a few things from Wal-Mart and got out on the record setting high day to run errands. When I returned to the parking lot, I waited to get in the van while my assistant loaded my purchases in the vehicle. Wondering around the van, I saw a minivan parked near us that had a wheelchair ramp.

The ramp was down, with the van's doors open, packages on the back seat, and nobody around. We thought this way an odd situation, but further investigating confirmed no one was in the vehicle. My assistant and I got in my van, but didn't feel right just leaving the other vehicle, that also had a purse in it. After sitting for another 20 minutes, the minivan's owner finally rolled up and into her van. She didn't act surprised it was still open, but I guess just trusted nothing would be touched. As we sat waiting, few people noticed it, but two other nearby occupied cars seemed to be doing the same thing we were.

Some people are concerned what will happen in 2020 in the political arena as well as world relations. They are appropriate concerns, but we need to remember God is in control of all things. I will be watching as events unfold this year, but trusting in God's plan will be my main thought, even if everything seems to be going wrong. I pray that my readers here will as well and see what another week will bring.

What Day is It?

Living the quad life can get challenging at times. Weeks such as this last one emphasize it even further and add complications for those around me.

Last week, I posted about my grandfather getting into an accident and he was at the end of his life in hospice. It is a situation that many families have, or will, experienced. However, added challenge comes with my parents also taking care of me.

The morning after the accident, grandpa was in the hospital in Des Moines when my aunt called that dad and his siblings needed to to the hospital quickly. That same day, my day nurse called off sick and left me with only my parents for the day. While mom tried calling anyone that could possibly stay with me, dad got ready for an emergency trip to the city. My other day assistant agreed to come, but would have to finish what she was doing and drive half-an-hour to come. Therefore, dad had to leave on his own and mom find another way to get there. Since it was uncertain how long my parents would be gone, we also had to find help when the day person left.

Over the weekend, the scenario was similar with dad and mom coming and going, helping me, and all of us trying to spend some time with grandpa. On Monday, his condition worsened and both parents, with dad's siblings, went to be around grandpa. That is, until my day caregiver left and mom had to return home again. Wednesday included funeral planning and work at grandma's house with dad's entire family. Once again though, my parents had to leave the rest of the family early and also stay up with me overnight due to no night nurse. With lack of sleep and schedule changes, dad has frequently been wondering what do it was and what was happening when.

It's hard watching my parents try to help other family members in times of need, but unable to do as much as they would like in order to care for me. Also just laying in bed, unable to help my family, doesn't feel right either.

Friday evening was funeral visitation. My grandparents own a small grain elevator and know a lot of people. For over three hours straight, people I didn't know came up to offer their condolences. However, the majority weren't familiar with me living the quad life. A hand would be thrust in my direction expecting to be grasped for a shake or hug. The hand's owner would then usually notice my arms are strapped down and the awkwardness of how to shake, or pat, hands follows. My voice also got drowned out easily amidst everyone else talking in the crowded room.

At yesterday's funeral, I was thankful to be able to deliver part of the message and speak briefly about grandpa. Several people expressed appreciation afterwords that they enjoyed what I said and how it was presented.

Weeks like these show more awareness about people with significant disabilities is needed. Despite the challenges, I'm thankful for what my parents and I were able to do. Now with both of my grandfathers gone, funerals are becoming more familiar. It is part of living in a fallen world and will occur more until my own time comes.