This article is related to the tragic and unexpected death of my son, Michael.
The days immediately after Michael’s death were very difficult. I had been warned that certain objects, sights, sounds, and even scents could trigger any number of strong emotional responses. I certainly experienced those. Some were centered on physical objects, like the jar of peanut butter on the kitchen counter, the boxes of apple juice in the refrigerator, and the articles of clothing I pulled from the dryer. Others were connected to specific words that came up in conversation. Words like pillow, tent, phone, and blanket were among his most frequently used.
I was especially aware of sounds, or rather the lack of them. Michael would frequently take a smart phone or other handheld device and use it to play some of the worst “music” I have ever heard. A lot of the stuff he liked on YouTube, for example, sounded more like white noise than music. (For someone with his sensory issues it may have sounded just fine, but I hated it.) Whatever the case, for months there had been a constant, muffled stream of sound leaking from Michael’s bedroom. In the evenings following his death, I was very aware of its absence.
I also found some associations that I didn’t expect. Lisa and I like to watch Animal Planet together. Some of the shows we watch involve the operation of zoos and wildlife sanctuaries, where all kinds of animals are featured and discussed. Some of the other shows we watch involve game wardens and other types of law enforcement officers dealing with animal control issues. Sometimes these officers deal with the search, rescue, and recovery of missing people. On the night of Michael’s accident, I saw the real thing. A group of policeman and other first respondents were combing a wooded area looking for my missing child. When I looked at the TV screen and saw those game wardens searching a wooded area, it was like a sledgehammer to the head. Knowing that those wardens were looking for evidence of illegal hunting, and not a lost child, didn’t matter. It was the visual image that set me off. In my contorted mind, all I could see was a man in a police uniform running out of the forest carrying the wet, lifeless form of my son. The images on the television were too similar, so I reluctantly told Lisa that I couldn’t watch any more. The TV was turned off, and the disturbing silence returned to our home.
It has been four months since that horrible day. The emotional associations with everyday objects and events are starting to fade, but they still occur. I suspect some will continue for some time to come. Perhaps for the rest of my life.
“Tears are the silent language of grief.” —Voltaire
It has been said that the worst pain a parent can feel is the loss of a child. I now understand, and agree with, that statement. Thursday, November 21, 2019, would have been my son Michael’s seventh birthday. Tuesday, September 24, 2019, was the day he suffered an accident that ultimately ended his short life.
The events of that day are hard to keep straight, even after several weeks, but I will try. Caitlin, Michael and I had arrived home around 6:30 in the evening after a very routine trip to the grocery store. We had also spent a little time at a local playground and took care of a few quick errands. When we arrived home, Caitlin went into the house while I unloaded some of the groceries. Michael climbed out of the car and started walking toward the front door, like he had done dozens of times prior. At that moment I received a phone call.
Somewhere within the next few minutes, catastrophe struck. I had been on the phone for roughly five minutes, when Caitlin asked me, in alarm, where Michael was. The last time I had seen him, he was walking toward the front door. But apparently, at the last minute, he changed direction and went somewhere else.
Michael had wandered off before, so this wasn’t without precedent. He wore a signal device on his ankle for just such an emergency. Caitlin called 9-1-1 while I quickly ran around the property to see if I could find him. After a few minutes, emergency services had started scanning for his signal device, and help was on the way. In the mean time, I continued to search the area around the house while Caitlin spoke on the phone with Lisa, who was still in town on other business. Within ten minutes, people from throughout the neighborhood were searching for Michael. A few minutes after that, two sheriff’s office patrol cars arrived and joined in the search.
At roughly 7:00pm his signal was located, and he wasn’t far from the house. But the signal wasn’t moving, so the policemen were getting anxious. A few minutes later he was found floating face down in a pond, not a tenth of a mile from our house. He was cold, wasn’t breathing, was unresponsive, and his heartbeat was erratic. He was immediately rushed to Culpeper hospital. By this time, Lisa had returned home, so we quickly loaded into the car and started for town.
Upon arriving at Culpeper hospital, Lisa ran to the emergency room to see Michael, while I stayed with Caitlin. For close to 80 minutes they worked to necessitate him and stabilize his pulse. They eventually succeeded in stabilizing his heartbeat, but he was still unresponsive. A doctor informed us that he was being airlifted to the University of Virginia’s pediatric hospital in Charlottesville where further treatment could be performed. But the doctor feared that Michael was already brain dead.
We collected ourselves and left. The plan was to make a quick stop at home for a change of clothing, medications, and the like. On the way home we hit a deer. The crazy animal literally appeared out of nowhere and destroyed the car windshield! Fortunately, the car could still be driven, so I turned on the hazard lights and slowly drove the rest of the way home. We picked up what we needed, loaded into our other car, and headed for Charlottesville.
We arrived there around 11:30pm, and found Michael in a ward room connected to various tubes and monitoring devices. We was receiving a steady supply of medication to keep his heart running, and a respirator was helping him to breathe.
By this time Lisa, Caitlin and I were expecting the worst. The hospital chaplain on duty was an Episcopal vicar from the University. He was very helpful in helping us to focus and remain calm. He did not perform last rites on Michael, because we weren’t at that point yet, but he did recite a special prayer for seriously ill patients.
The next several hours were long and surreal. The real concern was that there was no sign of neural activity. Over the course of the night, nine different doctors, all with different specialties, examined Michael. Unfortunately, all of them said the same basic thing. Namely, Michael wasn’t going to survive.
We had one last cause for hope. If Michael had slipped into some sort of coma, he could potentially wake up. If such a thing is going to happen, it almost always happens within 24 hours. Also, an EEG test would determine weather or not his brain was still functioning. But to be reliable, we would have to wait for the appropriate specialists to arrive in the morning.
We made a few phone calls to workplaces and schools to let people know where we were, and why we wouldn’t be showing up that day. Then we started calling family members, some of whom were out of the country at the time.
The neural specialists arrived around 10:00am on September 25, and started testing. There was still no neural activity. Michael didn’t even show a blink response when his eyes were subjected to bright light. The EEG rating was so low that the technicians weren’t sure they were picking up background electrical activity from the instruments themselves.
The prognosis was simple, and tragic: Michael’s brain was gone. It was only a matter of time before his heart and lungs stopped working. Now we had to make the most difficult decision that anyone can ever make. But before we did, there was one more expert we needed to consult.
We contacted the hospital chapel and requested a Roman Catholic priest. The church is notoriously strict about certain things, including when to take a person off of life support, so we wanted to speak with a priest before proceeding.
The Newman center at the University of Virginia hosts a small Dominican friary, and one of the friars came to see us at about 1:00pm. I wish I could remember his name (it is written down in our papers somewhere), but he was a very understanding man. He also knew the vicar who spoke with us the night before, and may have already spoken with him. We explained the events of the previous several hours, including the assessments of all the medical personnel who had examined Michael.
The priest informed us that whenever there is a reasonable chance of improvement, medical treatment should continue. That is, if there is still a chance of the patient recovering, we – the family – are morally obligated to continue treatment. But for Michael, this was not the case. After considering everything he knew, the priest concluded that continuing medical treatment on Michael was not going to bring any useful results. After some discussion, we decided to meet Michael “half way.” We would reduce the medication to a minimum, and allow Michael to leave on his own.
But a new development appeared. A social worker asked us if we wanted to donate any of Michael’s organs for transplant, or if we wanted any of his tissue samples to be used for scientific study. This was a surprisingly easy decision to make.
We easily agreed to organ and tissue donations. After all, Michael wasn’t going to need them for much longer. This required him to remain on life support for a few more hours while the necessary surgical equipment was prepared and the needed personnel were gathered. Everything would be ready shortly after 8:00pm that night.
While completing the paperwork for the donations, I asked if a brain tissue sample would be taken. When I was informed that one would be, I stipulated that it include a portion of his corpus callosum membrane. That is the membrane that coordinates communication between the two hemispheres of the cerebral cortex – the left and right brain. In Michael’s case, it was always thin and inefficient. The two halves of his brain literally didn’t communicate well. This was arguably the root cause of his disability, and I wanted to make sure it was examined. Perhaps something could be learned that would help future patients. The social worker noted my concern, and told me that it would be followed.
The priest performed the anointing of the sick, followed by last rites. The equipment was re-configured to keep him stable for several more hours, and that was pretty much that. The priest returned to the friary around 2:30pm, while the three of us went to the hospital cafeteria for a much needed meal. We were beyond exhausted, and our emotions were all over the map. All in all though, it was a welcome break.
Shortly after 8:00pm that night, we were informed that the surgery rooms were in the final stages of preparation, and that everyone who needed to be present was on site. The medication drip was reduced to minimum, and he was disconnected from the respirator. Then something very beautiful happened.
The hospital has a ritual they perform when a terminal patient is being taken to donor surgery. As the patient is wheeled through the hospital, staff members in whatever rooms are passed go into the corridor and watch them roll past. It is their show of respect to the patient and the grieving family. Michael was wheeled through the hospital, flanked by several doctors and nurses, while Lisa, Caitlin and I followed behind. Along the way, his favorite song was playing on my smart phone. As difficult as it was, it did provide some comfort.
Michael’s heart and breathing stopped shortly after 9:00pm on September 25. We started for home about thirty minutes later, to whatever future awaited us.
Michael was entrusted to the Clore-English funeral home in Culpeper. His funeral mass took place a week later, on October 4, and his ashes were interred on October 21.
I will add to this story when I am able. But for the moment, this is as far as I can go.
For the return trip we tried to schedule things better, and not try to go quite so far in one day. Our target for the day was at the theoretical half-way point. The last time we drove this route the weather was ugly. Sadly, that was the case again this time. There was heavy rain, high wind, and overcast skies almost the entire way. There was one stretch, from upper Alabama to roughly the Tennessee state line, where the sun was able to make a very welcome appearance. As before, the stretch through Mississippi and Alabama was mind numbing.
Our target was Athens, Tennessee. That town is, almost to the mile, half-way between Hammond and our home. If time permitted, this would have been a nice town to explore. It has some nice historical sites, and good examples of Americana architecture. We filed these as possible ideas for a future trip, because we are likely to travel this route again.
It took over nine hours to get from Hammond to Athens, which wasn’t bad, but still longer than we had hoped. I suspect the weather, heavy traffic around Birmingham, and a lot of construction near Chattanooga contributed to the delay.
We also discovered that when you rent a hotel room, you get what you pay for. We saved a little money and went with a less-expensive hotel chain. Our room was acceptable, with firm beds and a bath that did what they were supposed to do. But, the building wasn’t in the best of shape, and there were signs of water damage. Even so, after the long drive, we were too tired to care.
Well, most of us were. Michael refused to settle down to sleep, and kept turning on the lights. He also tried turning on the television and clock radio. Needless to say, this was not appreciated by the rest of us. But even after being scolded multiple times, Michael would not stop.
However, I had what might be called a revelation. After turning off the lights for the umpteenth time, I soon saw Michael’s silhouette rise from his bed and make a bee-line for the light switch. I watched in the dark, ready to scold him the instant he turned on the light. But I didn’t, and here’s why. For a split-second after hitting the switch, I caught a glimpse of his face. He looked upset, stressed and afraid. When the light came on, his face quickly returned to normal.
At this point I need to include some exposition. Michael has agenesis of the corpus callosum. This could explain his difficulty with language, and hyper-sensitivity to touch. We still aren’t sure of the severity of his case, but regardless, his mind doesn’t work exactly the same as ours.
Michael has never been a good hotel guest. Whenever we travel, and we know we’ll be staying at a hotel, we expect Michael to be difficult. People with ACC often have difficulty in strange places, some more so than others. Michael generally isn’t afraid of the dark, at least not at home. But we weren’t at home.
Consider that Michael was in a strange, new place that he had never seen before, with few or no familiar points of reference. He hadn’t had enough time to catalog his surroundings, which from his perspective, was unrecognizable. When the lights went out, those few things he had been able to process were no longer visible. I think that’s when his imagination starts running, and fills the dark space with all matter of new and confusing stuff. I later did some reading on this, and my guess has support. There have been cases of ACC patients needing constant audio, visual, and sometimes olfactory input. If their input streams are not being filled by external stimuli, their brain starts to create artificial input.
Anyway, back at the hotel, I explained my theory to Lisa and Caitlin. To restore order to his sensory input streams, Michael needs the lights on. And when I say that, I don’t mean he prefers the lights on, he needs the lights on.
We left one of the small lights running as a night light. Michael still kept turning on the other lights, after which one of us would turn them off. This game continued for a while until eventually, in the dim light, Michael succumbed to fatigue and fell asleep. We don’t know if the night light helped or not.
Day 14, January 3, 2017
We had hoped that the second half of the trip would be easier, given that it is collectively downhill. Actually it did go easier in most ways. Traffic was bad in certain areas, but that was the worst of it.
The real problem this day was, apparently, me. Lisa said that for the entire day I had a rather scary glaze over my face, and just didn’t look right. I also had to make several very sudden and urgent bathroom stops over the course of the day. We got home around 6:30pm.
I turns out that my blood sugar had been dangerously high that day, with numbers that are usually used to describe car payments. Stress from the driving could account for some of it, as could the starch-heavy food that travelers are often forced to live on. It’s even possible that my slow metabolism was still processing the red beans and rice from two days earlier. Whatever the case, those blood tests were shocking, and these are things that a type-2 diabetic can not ignore. I started planning some diet changes that very night.
This brought home the fact that 2017, and the drastic life changes it was going to bring, had begun.
Today is Michael Vincent’s third birthday. That means he is now out of the terrible twos, and into the terrorizing threes. He’s had a big year! He’s finally starting to communicate, mostly by pointing and by using pictures. He even started preschool in August!
Here are some images of My Son the Cyborg, from 2015.