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Family

One Year Later

In March 2019 when the original tumor was removed from Josh’s brain, I naively thought that he would be healthy again after a few weeks of recovery and some physical therapy. I thought that the brain tumor was just a bump on the road, and that we would continue on with life once it was gone. What I didn’t understand at the time, but would soon realize, is that we were on an entirely different path filled with tough choices, hardships, and sorrow. Or, that Josh would carry the heaviest weight as he was faced with several hard truths and asked to make unimaginable choices.

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Although we were grateful for the successful removal of the entire tumor, this was still only the beginning of Josh’s road to recovery. When he was transferred to Mary Free Bed, he had paralysis on the right side, and couldn’t speak. Simple things that we take for granted, like being able to spit, were challenges for him.

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At the same time, Josh was about to do something incredible. He was once a teen who needed to be reminded to take out the garbage, or woken up for school in the morning, but once he started rehabilitation, he gave everything he had as he worked hard to gain back the abilities he had lost. He persevered during the remaining three years with kindness and a sense of humor.

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There was a point during his rehabilitation where he was undergoing physical therapy, radiation treatments, and chemotherapy at the same time. There were some rough days, but he was able to do it all.

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Josh had improved so much by the fall of 2021, that I was beginning to feel like we were finally coming “out of the woods” and that he was about to have a long future. He would ask questions about what would happen after graduation, and I would explain that he would continue his classes, but I wasn’t sure what that would look like. We helped him purchase a one-handed keyboard as a part of his Make A Wish request, and I thought this would be something he might use later in life as a part of a job.

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I’m grateful for the privilege to be Josh’s father, and to stand beside him as he courageously regained his ability to walk and talk during his fight with cancer. He was a wonderful young man, kind hearted, a strong big brother to Elijah, and a good little brother to Kayla.

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I’ve missed him every day since he passed away. There are a lot of things that I would have wanted to share with him.

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Most recently, Elijah and I played a joke on my wife for April Fools Day. The day before, I bought four packages of googly eyes, and hid them around the house. This was in homage to a trick Josh played on his Grandma Morgan a few years ago after he found a package of googly eyes that she had at her house. He hid them so well that it took several weeks for my mom to find them all. She still complains about it.

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This was the kind of thing that Josh would have appreciated helping me with, both because it would be funny and because it would have been an opportunity to show off his height. But, he would have initially groaned and rolled his eyes before going along with the idea.

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Maybe the best thing we can do in Josh’s absence is to live life the way that he would have if he had been given more time. Appreciate every day, show kindness to others, persevere through tough challenges, and take every opportunity to laugh. Especially if it involves googly eyes.

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Categories
Family

The Great Office Experiment

A few weeks ago, I moved my computer equipment to the vacant bedroom upstairs. I did this for many reasons. First, I felt like it would free up space in the master bedroom, allowing me to organize things a little and make it more of a living space. Second, I had worked inside the upstairs bedroom before, and remember it being very quiet. It’s also generally a lot warmer upstairs than downstairs, a definite advantage in the winter.

I also felt like it would please my wife to free up space in the bedroom, because she often complains about how messy it had gotten. I concluded that a workspace where I worked on computer-related projects didn’t blend well with a space intended for other activities, like sleeping or just hanging out. I guess that, ultimately, the separation of these two sides was like an experiment to see what would happen if my bedroom was turned into just a bedroom.

The results were that my bedroom did feel a lot more open and comfortable. There just was a lot more empty floor space.

Why did I move my workstation back downstairs? Our daughter is visiting this weekend, so it seemed better to restore her bedroom to the way she left it. Also, not everybody agreed with my “occupation” of the upstairs bedroom. But, there are also advantages to containing all of my stuff in one room, namely that it becomes a lot easier to keep track of. I think that Elijah benefited from my presence upstairs, especially when I’d be working in the evening and he was tucked in for the night.

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Family

How I became a fan of Chadtronic

A few years ago, probably around 2016 or 2017, we were hanging around at home when I told Josh he needed to see a funny video I had found on the Internet. I cast it onto the TV, and we both shared a good laugh. Then, he asked me if I had ever heard of Chadtronic.

Chadtronic? No, I hadn’t seen any of his videos, although I was getting the impression that Josh very much had. He found an episode on YouTube where Chadtronic reacted to an old video from the 1990’s which helped show people how to get connected to the Internet. I was drawn in by both the nostalgia of the video and Chadtronic’s sense of humor, and from that point forward we always tried to catch every one of the videos that he posted. When one of us saw a notification that a new video had gone live, we’d share the news and then gather around the TV so we could watch it together. It just wasn’t the same watching them for the first time without Josh in the room.

When Elijah was old enough, we introduced him to Chadtronic, although he brought his own perspective.

I suppose that I might have eventually stumbled across Chadtronic on YouTube. What I treasure the most is the time that I spent with Josh watching his videos, sharing a few good laughs, and discovering new memes together..

Categories
Family

Recognizing my Sons on National Son Day

As sons go, Josh and Elijah are the best companions that a dad could ask for. Elijah still has a fresh view of the world that helps to keep me feeling young. Josh kept me on my toes. I appreciate all of the time that we were able to spend together. I’m excited to see what the future holds for Elijah.

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Categories
Family

Senior Year of College already

It’s hard to believe it, but today my daughter, Kayla, started her senior year at CMU. Even harder to believe is the fact that in a couple of semesters, she will be getting her college diploma and stepping out into the wide open world of life, profession, relationships, and everything else that comes included when you become an adult. I knew that this day was coming, but back when it was three or four years away it seemed so far off.

Kayla has done amazingly with her classes, and already has a lot to be proud of. She was also a trooper, balancing her college classes with everything that was going on with her brother, Josh, helping us by watching her little brother Elijah, and adjusting to a new way of doing things as we all dealt with COVID19, lockdowns, and virtual classes.

Good luck with this new year, Kayla.

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Family

The New Mutants

Just finished watching “The New Mutants” with Kayla Morgan. Overall, the movie was better than I expected, but as my daughter put it “nothing seemed to really happen.” Perhaps it is strongest as a character study. It felt kind of like the Bottle Show episode of a really expensive TV series. It’s still worth checking out (especially for free at the library).

I think it was on Josh’s radar for a little bit as a movie he might have wanted to see. It was out in the theaters early on during COVID-19. I’m not sure if he would have liked it or not. Kayla seemed to get into the movie, despite its flaws. I’m glad she was able to watch it with me, because it would have felt wrong to see this particular one alone.

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Family

First week in the Third Grade

It has been hard for me to wrap my mind around the fact that our youngest son, Elijah, started the Third Grade this year. I’m not sure why, but that feels like a much bigger deal than the first or second grade. It’s as if he has crossed some kind of threshold that marked him as a “big kid” as opposed to a “little.” Or, if he is not the oldest grade, then he is somewhere in the middle, which puts him only a year away.

Each time my kids have graduated to a new grade in school, I’ve found myself thinking back to my own experiences. My third grade year was spent in a classroom which was split between second and third graders. Sharing a classroom with second graders felt somewhat special, kind of like being in a one-room schoolhouse as portrayed in “Little House on the Prairie.” But, I also remember that my mom wasn’t very happy. I also remember that our third grade teacher was fresh hire in the school, and I think that the idea of creating the classroom with split grades might have been an eleventh hour solution.

Maybe Elijah’s entry into the third grade affects me only because when I look back my experiences in the third, fourth, and fifth grades all sort of blend together. I do remember being in the classroom, and Movie Days, but the rest is a bit of a blur. I made a friend in the third grade who also rode the bus with me, and in a year or two turned into more of a bully.

But, what do I actually remember about the fourth and fifth grade? Only the smallest bits and pieces. Enough to understand why I want Elijah’s time in elementary school to be both educational and pleasant.

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Family Technology

How to use smart speakers to set up an Emergency Medical Communication System in your home

Last year, as the beginning of July drew closer, my wife and I focused our energies on getting the house ready for our son, Josh, to return home after spending five months in rehabilitation at the Mary Free Bed. We switched bedrooms so that he and his little brother would be on the ground floor, and we would be on the top floor, made arrangements for the driveway to be paved, and changed around the bathroom so that Josh would be able to safely use the toilet and the shower.

Surgery in March to remove a large tumor from Josh’s brain had left him paralyzed on the right side, and unable to speak. During his rehabilitation, he was able to gain many of these abilities. When he checked out of Mary Free Bed in July, he walked off of the floor with the aid of a cane, and could speak sentences that were about five words long.

One of the challenges I knew we would face at home was being able to attend to quickly attend to Josh’s needs. We went home knowing that he would be starting six rounds of chemotherapy treatment right around August. This meant nausea. Even on an ordinary day, I knew there would be times when he would need our assistance, but if my wife or I were upstairs or on the other side of the house, it wouldn’t be as easy to hear him.

The other half of the challenge was that it was difficult for him to find the right words he wanted to use to express himself. This is fine during casual conversation, but in an emergency time is of the essence. For example, “bucket” became the word that he used when he felt like he needed to throw up. It was just something that started while we were in Mary Free Bed.

Hospital rooms are typically equipped with devices that allow patients to call nurses when they need something. Josh and I used his many times, although he wasn’t always comfortable trying to make the requests himself because of his aphasia. I knew that we needed a system which was similar to the nurse call intercom, but could be set up to help Jon communicate his needs.

Our Google homes seemed like a logical starting point. We had just gotten enough Google homes to position one in each room, and I had used Google’s app to create several automations. You could, for example, program the Google home to turn on the lights and play a specific podcast if you told it “I’m home.”

You could also pre-program an announcement which would go out on all of the Google speakers when triggered. And, since several of our rooms were equipped with Google homes, that announcement would be heard just about everywhere. So, we already had our own version of P.A. System.

I set up the triggers so that they would be unique to Josh’s medical needs, but rare enough so that we wouldn’t set off the trigger by accident. I borrowed the hospital’s color-coded system, i.e. “Code Red,” or “Code Blue.” Code Red, for example, triggered an announcement stating that Josh felt ill. I believe the exact phrase was, “I am about to get sick.”

I ended up with three or four automations, but I knew that it could be easy to forget all of their meanings. So, I set up an additional automation which would serve as a type of verbal menu. The trigger was “help,” and the response from the smart speaker included a list of the different options.

I had been binge watching “Star Trek: Voyager,” and was inspired by the show’s EMH to write the script for this automation as if Google was an Emergency Medical System. The word “help” would trigger a preliminary announcement to everybody in the house that the “system has been activated.” This was enough to cause alarm, even if you were sound asleep or involved in something else. Choosing the different codes would help to give context: I feel sick, I need to use the bathroom, etc.

I recall the system only being used once as intended, on the first night of Josh’s chemotherapy treatments. I tried to encourage the rest of my family to use it, but it didn’t experience a lot of traction. A year later, things are quieter, and Josh has an easier time communicating his needs, so we don’t rely on this so often. He has also been using text messages or just the intercom feature on the Google home in his room to get our attention.

I have been thinking, though, about all of the corona virus patients who are quarantining themselves at home, and the people who are taking care of them. It seems like this kind of home emergency medical system, or HEMS, might be needed there as well. Especially if someone needs help, but isn’t able to quickly describe what it is that they need.

I also think about the way Josh was in the hospital, and his challenges with using the nurse intercom. How does one explain over an audio system what it is that they need, when they aren’t able to find the words? An automated system might have helped to bridge that gap.

I also purchased a pair of Alexa speakers a few weeks before Josh came home because I had seen the Alexa in action and was impressed with its intercom feature. You could basically connect an intercom call between one room and another, and then carry on a conversation. Google homes only allowed you to send short bursts of words to each other. My goal was to enhance our communication with the Alexa. We could also use the Alexa as a “baby monitor,” so that we were alerted if Josh got up or said that he needed something.

I think that this experimentation could be carried a lot farther with Alexa’s ability to set up “skills.” I can imagine setting up Alexa so that it asked the person intuitive questions, and then took actions based on the responses.

And, my Alexas are able to send my phone an alert if it “hears” the sound of broken glass. I wonder if it could be set up to react to other sounds, such as someone getting sick or key phrases.

Having tried both smart speaker systems, if I were to start over again I am sure that I would choose to invest only in the couple of Alexas. I think that their intercom capabilities are far beyond what the Google home can do. And, as I said, I think that Alexa has the potential to become a truly voice-activated medical assistive device.

Categories
Family

Heaven

This morning my seven-year-old son, Elijah, began asking me questions about what happens to us after we die. He was rushing me while I strapped him into his car seat, complaining that I was taking too long. It was snowing, and he pointed out that with the door opened, the snow was landing on him, the sucker from the pediatrician’s office he was holding in his hand, and me. He was very explicit about feeling concerned about those three things in that precise order. Then, he said that he was mainly worried about himself.

Before I could ask him what that meant, he asked what happens when we die. I could tell that this was going to be an interesting ride home.

He was basically asking if there was a life after death, and I said that according to our religion there was, and that we called it Heaven. I explained that Heaven was a wonderful place where there isn’t sickness, or pain, and that you can see others who passed away before you. Elijah likes to relate things to video games, so I used the analogy of Mario Brothers to help describe what Heaven might be like. I said that it was like a level without any enemies, and perhaps you could walk or ride through the sky on clouds. Also, all of the video game characters from the past and present, like Qbert and Pac-Man, might be seen hanging out there.

I also said that Heaven was a place you could enter if you were a good person. I told him that his Grandpa Boyne, who passed away when he was much younger, was most definitely in Heaven, and he was probably there with the rest of his family had passed away before him. This was important, because we have seldom talked openly to Elijah about his grandfather passing away, although I think he understands that he is absent from our lives.

This was the first time I have discussed death, dying, Heaven, and Hell with my kids. It just never came up with my older two. But, I’m not surprised that Elijah thought to ask about it, just maybe the timing following a trip to the doctor’s office. With everything that has happened in our lives and nationally, maybe there has just been a lot more discussion about death and he’s picked up on it.

He asked a lot of great questions, too:

  • Do we have a life after we die?
  • Do pets go to Heaven?
  • How long does it take to get to Heaven?
  • If you are holding something when you die, does that go to Heaven with you?
  • Where is Heaven?
  • Where is Hell?
  • Does God live in Heaven?

I answered each one based on what I had learned, although I pointed out that nobody could be sure.

I’m thinking it is time for us to give religion more attention, so that Elijah has a chance to ask more of these questions. And, I’m going to need to go so I’m prepared for more of these conversations.

One thing that continues to amaze me is all of the positive ways in which my kids have challenged me by forcing me to take new changes, try new things, and to reflect on questions that I wouldn’t normally take the time to ponder. And, I didn’t mind thinking about death and Heaven during that car trip home, because it helped distract me from my more down-to-Earth problems..