Sleepy Mother's Day

The second Sunday in May has been dedicated to celebrate mother's. This year, I am thankful for all my mom does, while trying to stay awake.

Monday afternoon, I received a message that my primary night nurse was sick. He ended up being gone all week, but will hopefully be back tonight. My other caregiver covered a few nights, but I haven't had anyone for night coverage since Tuesday. Therefore, the last four nights have been mom and I staying up until 1:30 in the morning. After about 4-5 hours of sleep, dad gets up to take over.

We knew Friday and Saturday would not be covered, and that was going to be a challenge already. Now with it doubled, the three of us feel like zombies during the day. I also had two days of helping with an outreach group (upcoming blog) that started with an hour of training. The speakers were interesting and ones I looked forward to hearing, but I kept yawning while they spoke.

Nights like the last four are times I'm even more thankful for the mom God has given me. She has had more responsibilities lately in helping other family members and continues to deal with her own health needs. Every week, mom continues to work with my caregiver's paperwork and keep everything straight so I can live at home. Whatever is happening, she continues to help in every way possible.

I'm most thankful for the instructions mom gave me when growing up. She taught me to read the Bible and trust God's word in everything. Mom also worked to make me as independent as possible and to help me get through school. Some days my independent nature doesn't agree with hers, but we have learned to compromise as needed.

Every day should be one where parents are recognized for what they do. Thank you mom for another year with many unexpected circumstances, but adapting as needed for all of us.

Stuck in the System

When I received my spinal cord injury in 1985, most of my medical expenses were covered by private insurance through my dad's employer. In 2014, due to the Affordable Care Act, I nearly lost that coverage. After a long trial, I ended up with private insurance covering nights and a program through Iowa Medicaid covering my day hours. This is what I have been using since that time, and it appears with no alternative.

In the last few months, my parents have celebrated their birthdays; with both either at or near retirement age. When most people reach this milestone, they look forward to decreasing their hours at work and doing other activities they enjoy. However, that apparently isn't something my parents are allowed to do.

Mom discovered that if my parents go off of private insurance and start taking retirement funds, it would disqualify me for the Medicaid program I use, as well as other consequences. Iowa uses what's called MCOs, or Managed Care Organizations, for all but a few recipients in the state. I'm one of the few that doesn't use an MCO, and it's a good thing. Many stories of problems with Iowa's system have been documented, including receiving less coverage. We can't find anyone to tell us for certain what I could get covered if I switched, and it very likely would be much less than I use. Also, since my private insurance is through dad's employer, he needs to continue working full-time to receive medical benefits.

This has been an upcoming issue my family has known was coming for about a year. We have looked for solutions, but it appears the only guaranteed answer would require an act of congress. I don't have any plans on running for an elected position, so it's very unlikely that anything would change in the next decade, or three.

Seeing all my parents have done for me, it has been hard not feeling responsible for keeping them from enjoying what they have worked decades to achieve. While attempting to sleep, thoughts of going to a care facility to ease their work load have filled many nights. However, I know that moving to a facility would also end everything I do outside of home.

The only comfort in this, and all, situation is diving deeply into God's Word. Just as He cares for the birds of the air, He knows our needs as well. I have had many times in life that looked uncertain, but God has carried me through. The time before a solution comes is hardest, but it does come in God's time. I have no idea what that could be in this situation, but I will continue to pray, wait, and do His will until change comes.

Names in Chronicles

It has been a few weeks since I posted on Bible reading, but I continue with it every morning. The two books of Kings finished Thursday and Chronicles started Friday morning. Some parts of the Bible are easier to read than others, but this is the area I find most challenging.

First and Second Chronicles primarily repeat the information given in First and Second Kings. Chronicles was written about the time Israel returned from captivity in Babylon to their home land. One difference between the books is that 1 Chronicles starts off with names, a lot of names.

The first chapter begins with genealogies from Adam, through Israel, and the kings of Israel. After several chapters of reading who had what sons, the book lists various positions held in the kingdom and who had them. Reading lists of names that sound very unfamiliar for several days gets challenging to stay awake, but they have a purpose.

God saw it as important to record each of these individuals, who lived in history, in a way that they would be remembered for thousands of years after they died. Very few people in the last 1,000 years get to have that recognition, let alone a large number of people as recorded in Chronicles. The genealogies also serve to record the ancestry from Adam, the first man, to Jesus. While I read each name recorded in this book of the Bible, it reminds me of more books that God has told us about.

In Revelation, and elsewhere, we read about judgement at the end of time. Books will be opened that have recorded our activities while we lived. Anyone whose name is not found listed in the book of life will be thrown into the lake of fire, where there will be everlasting torment, weeping, and gnashing of teeth.

While it may be difficult to sit and read through so many names, it should remind us that our name has been written down as well. Just as the people recorded in Chronicles have been written for all generations, so have our names been recorded for all of history. Every person needs to repent of sin and trust in Jesus alone for salvation and be written in the book of life. It is one record that will have eternal benefit, and always be remembered.

School Visits 2021

In 2004, I rebuilt the website for my local Christian grade school and saw that the second-grade class did a course on disability awareness. Talking with the guidance counselor, I learned the course was watching a 30-minute video by Joni Erickson Tada. I volunteered to be a live version of the video and my school visits have continued every year since.

I currently have six grade schools I normally visit, with two of them having two grades combined. Therefore, I go to them alternating years and end up seeing five schools every year. For the last three weeks, I have spoken at four schools to seven different classrooms. One class was a third grade with the others all second grade.

With some of the COVID restrictions still in place, I wasn't sure how this year would work. When I scheduled visit dates in January, the teachers weren't certain about restrictions either, but school administers allowed me to come. My first visit was in a regular size classroom, but two classes of students all crowded into the room to hear me speak. I estimated about 40 kids were present with most of them sitting on the floor. I was frequently looking down toward my feet to make sure I didn't get too close to anyone as I moved around. A week later, I met with a class of 13 students in the school's gymnasium to allow further distancing.

Every school I have visited, I demonstrate writing with my mouth and then have the kids try the same. Hearing about mask requirements, I planned an alternate demonstration this year. One of the videos I have the teachers play is about a boy, and his mom, who was born without arms. He therefore does everything with his feet, including writing in school. I thought I could have the students try this instead of mouth writing, but it wasn't needed. I saw over 100 kids the last few weeks and maybe 5-6 of them were wearing masks. I was thankful I didn't need to learn to adapt and could see the children's faces to get feedback as I spoke.

Most of the questions asked were the same as other years, but not entirely. Two students at different schools both wondered how I deal with challenging times or if anything scares me. I might be speaking to seven- and eight-year-olds, but it seems apparent this era of lockdowns is scary to them as well. Presenting at Christian schools, I'm thankful I could point them to looking to God's Word for assurance and trusting Him in whatever may come.

After these school talks, I've felt a new sense of energy again. One school remains, but I don't visit until late May. I'm thankful God has allowed me to share the quad life I've been given and teach the next generation to use any abilities we have, even if a little different from others, to serve Him.

Crossroads

Most days, my home phone gets junk phone calls. The caller ID will come up as spam, name unavailable, or various other oddities. While biking Tuesday morning, a call came with an odd name on the ID. I expected a robot voice or someone that could barely speak English and had some scheme to get my personal information. To my surprise, it was an actual local person that wanted to speak to me.

It was someone from one of the golf courses in town offering an advertising spot for the year. He said it would be in front of business owners for a full year, many who don't know how to do websites, and potential customers. The rate I was offered wasn't as bad as I expected, but still nearly four months' worth of regular expenses. I thought briefly about taking the offer, but declined it.

This isn't the first year I have let the same advertising opportunity pass. Marketing my web development work sounds good, but it hasn't ever helped before. For the last several months, I have only had between 2.5-4 hours of paying work per month. More work would be great, but it's a catch-22.

My funding for nurses and medical care is partly through government assistance. I can only have very little income and my caregivers can't show helping me with anything job related. Therefore, I would like to earn more of my own income instead of just getting government assistance, but I can't without jeopardizing what I do receive.

Friday was my second school visit out of four this month, two more are later this week. It feels like I'm at a crossroads of staying with web development and trying to keep up with the industry, or going more into speaking and writing. I'm much more inclined to try the latter and see if I can stay busy with it. If this summer stays open to meetings, it may give the opportunity to test the waters.

Whatever comes, I can always strive to keep busy in the quad life and do what God allows. I have been asked some interesting questions at schools so far this month. Next week, I will see if I can decide which was the most unique.

Banging my Head to Beat my Chest

Not having the ability to breathe independently presents a few challenges in life. Thankfully, God has provided tools to help take care of problems living in a fallen world. The item I talk about the most is my diaphragm pacemaker (DPS), but that's not the only item I use to keep my lungs in good shape.

Since I can't control my diaphragm, I can't cough on my own. I have learned how to manipulate my breathing to somewhat mimic a cough, but I still need help moving junk around in my lungs. Since the time of my injury, I have used a chest percussion treatment (CPT) twice, or more, every night. I have nicknamed the procedure my nightly thumping, or beating, and my nurses are happy to say it's time to beat Joel.

The CPT is simply a hand-held wand that vibrates and gets moved up and down my chest and back. Combined with turning from side-to-side, it helps keep any junk in my lungs lose and easier to suction out if needed. I can't feel it, but I'm told it feels good and I have woken up to nurses using it on sore shoulder or back muscles during the night.

For many years, the machine I used was called a Flimm Fighter. It worked well, but the cord between the machine's base and wand would break after years of getting wrapped up. After I gave my machine to be fixed once, it was replaced with a newer version that has all the mechanism in one piece, with a long power outlet to the wall.

The new version is smaller, but it's heavier for my nurses to hold and the wire between the wall and unit often resembles a pile of spaghetti. This is very prone to connections becoming lose and the machine not working. This has been the case for about the last six months with trading out my CPT with a loaner to get fixed. Mine gets returned, only for the problem to occur again a few weeks later. If it doesn't work, then the only option is to pound on my chest, and back, by hand. The cycle has become annoying and feels like I'm banging my head on a wall.

I started searching for an alternate solution, but few people use a CPT anymore and instead utilize a vest that does a similar treatment with air. However, it's not an option for me due to my DPS wires. In working with my new pulmonologist, he also doesn't know of any alternatives. Therefore, it looks like the cycle of equipment problems will continue. When I received my CPT back a few days ago after another round of maintenance, the solution offered was to hit the device on something and that should help it. When you're told to hit your medical equipment with a hammer to make it work, you know it has design flaws.

Such is the quad life sometimes. I'm thankful God has provided equipment that has helped more for 36 years. However, I think more frequently I should have pursued a career in engineering to help with medical devices. I will see if everything functions this week, but won't hold my breath (I can't anyway).

A Tale of Two Easters

Today is Easter Sunday, the day when Christians celebrate our risen Savior. All who repent of their sins and trust in Him alone can be free from eternal punishment in hell. It is a significant day in the church and one not to miss.

A year ago, many churches held virtual Easter service with many pastors preaching to a camera and worshipers watching from home. The world was about a month into the global pandemic, waiting for the two weeks to flatten the curve. This year, most churches are meeting in person again, but still with many restrictions.

I just started going to worship in person a few weeks ago, but again didn't attend this weekend. One of dad's coworkers came to work after he was exposed to the Covid virus from his son. Dad doesn't work with the person directly, but still wants to be cautious. Therefore, we are trying as little interaction between he and I as possible. However, he still needs to help me a lot on weekends when I don't have day assistance. Part of the minimal contact also means not getting in my chair and being around people.

Jesus warned that those who are Christians and follow Him will receive persecution, just as He did. Many early Christians were martyred for their faith by Jews, Romans, and other rulers. The emperor Nero would have Christians covered in flammable liquid, tied to stakes, and burned alive to provide light at night. Some countries in the world today still have extreme persecution. I'm thankful that for this year, many believers were still allowed to gather and worship.

Later this week, I'm scheduled to visit my first grade school in over a year. I'm eager to work with kids again, but I am also wondering if I'll be allowed to go. As long as everyone remains free of symptoms though, all should be fine. I also mailed the two instructors a reminder early last week and I didn't hear back. Showing up at a school without an appointment wouldn't work very well.

Whatever happens the next few days, I'll go with whatever God has planned. Just as He plans were done 2000 years ago, they are today in the quad life.