My Son, Possessed

photo-1463674349210–38e4fa154dda - unsplash.com

He was just a 12 year old little boy, and I was just a mom trying to soak up the kids with our last few days of summer.

The day was ordinary, one child being tired with a headache and wanting to take a nap.

He was 12, afterall, his siblings, 11, 13, 15, and 16 . These were the years when naptime was not only initiated by the child, but would sometimes last an entire day if allowed.

That evening we awoke to a loud stomping down the hall. I turned the light on, my son stood at the end, facing the kitchen counter, his back to me, his arms resting at his side. I quickly walked toward him.

He wasn’t moving. I turned his body to face me. I noticed he was sweaty, and I noticed his eyes were completely black with dilated pupils.

Keith!” — no response, no acknowledgement.

He’s not awake! Tim! He’s not awake!” I kept repeating these shouts as I guided Keith back down the hall to my room. “He’s burning up hot, we need to cool him down!”

My son’s face contorted, he shrieked but he didn’t resist my moving him. He didn’t stop shrieking until we guided him into a cool shower, hoping it would help him come back to us and lower his temperature.

Meanwhile, I had my oldest dial 911. “My 12 year old is very hot and not waking up!”, I told them in a panic. She asked for my address, and I stared at my oldest staring back at me. I thought I always handled emergencies and trauma rather well. But that night, my mind had left completely, and took my address with it. “I dont know! I dont know!”.

Keith awoke before the ambulance arrived. He still had a fever, and we rode to the hospital for testing and answers.

That week he continued to have episodes which came upon him mostly at night, shortly after he fell asleep.

He would bolt out of bed - shout, scream, stomp, jump up and down, run back and forth, strike out toward the air or himself, repeatedly. He would click his tongue, flick it back and forth while making sounds, repeatedly. His eyes remained black and staring, and he looked absolutely terrifying.

That week he was seen by five doctors, including his primary care physician with two more trips to the ER and a consultation from a reputable children’s hospital.

Multiple tests were done, and the closest we came to getting answers was from his doctor and the results from my intensive internet searches.

When his doctor told me that he was having seizures, possibly from migraines, I was both floored and relieved. My experience of seizures did not even come close to what we were dealing with, but having this label gave a degree of comfort.

However, none of the doctors had experienced the type of seizures he was having, which were getting progressively worse, more violent and more frequent. He was obviously fighting an infection as well, which they could only say was a mysterious virus.

I was referred to a pediatric neurologist three hours away who scheduled us in almost immediately. But before that appointment was a visit to a different hospital.

Just a couple of days in, during my evening internet research, I became fairly confident that Keith had meningitis. The professionals disagreed.

At the end of the week, with his doctors blessing, we took him to another hospital (the largest and most reputable one in our area of the state), and demanded they perform the spinal tap for meningitis. The results were irrefutable.

Our relief was short-lived when all the virus causing meningitis types were tested and were a negative match, which led to the suspicion that he may have a rare type with a high rate of morbidity.

The results of this specific test to confirm such would take two days, but due to the severity of the risk of death we agreed to treat him immediately.

Unfortunately, the treatment included an intravenous medicine that he could feel slowly running through him like needles, for at least a half hour, every two hours. Oh, how I wished I could rip apart those tubes.

Keith was beyond overtired, his head and his entire body was in pain. He was terrified of falling asleep, as he would sometimes be partially awake during the episodes without any control.

I would lie down in his bed next to him, and read to him. Sometimes the pages faded before my sleeping eyes and the words spilled out in mumbles. He’d close the book for me, giggle, and tell me to sleep.

Such a beautiful boy.

We would make each other laugh, he’d talk to me about nonsense, trying to stay awake. But then he would reach hysteria and have one episode after another. I became skilled at recognizing this segue and keeping his IV intact.

When Keith actually slept, a nurse would come in to do the rounds, which would always wake him up. One particular time, I actually felt like I could’ve assaulted her. I met her at the door and pleaded with her to let him sleep. I think she may have read my harried and threatening eyes correctly since she retreated.

The test came back negative for that type of virus. The official diagnosis was an unidentified viral meningitis that caused, as a side effect, frontal lobe seizures. Recovery from the illness was a few more weeks, but recovery from the seizures? Unkown.

Upon release from that hospital we were driven to the pediatric neurologist for another hospital stay. This time, it involved an EEG.

His head was covered in a snaky cap connected to a large machine on wheels. Each wire was placed on his head manually, then wrapped. It was quite a process. My immediate thoughts were, how in the heavens above am I going to deflect the ruin of this intricate contraption?

He was under the care of two pediatric neurologists, one driving several hours north to collaborate. His primary neurologist told us that in his 30 years of practice, he had seen only 5 patients with similar seizures.

This seemed to be a good prelude for the group of student doctors entry into the room.

I was exhausted. Although his seizures had lessened in severity over time, the mind blowing aspect of our experience was still so present in every word. They asked me for details, and to start at the beginning.

I immediately apologized for any inappropriate laughter and demonstrative speech — as I had very little sleep for a long period of time and felt somewhat hysterical myself. Bless them with their eager ears and fast writing skills.

I was grateful to have a flexible enough job at that time where I could work for just a couple of hours to move things along and then stay with Keith. I was grateful for the other kids’s school and sports schedule which served as a distraction for them.

I reached a point where I was beyond driving capacity, and even fell asleep in my office chair sitting straight up staring at the computer screen. I was grateful for my in-laws chauffeuring when it became necessary.

I also reached a point where I felt like I had nothing left to give anyone else. Things and people were falling apart around me, and all I could focus on was soothing my son’s anxious mind and during his episodes, keeping him from harming himself — or leaving (did I mention his attempting to run out of rooms — although not managing the door handles?).

Over a period of time, perhaps three months, after several more monitoring visits and stays and the correct medicine was established, the episodes disappeared.

The seizures became very infrequent and mild, with feelings of weirdness, contorting sounds and visuals. These had even dissipated after a year or so.

We were told that it could be lifelong, this epilepsy. We were told he may have some brain damage.

But his scans showed no brain scarring. That moment was the first time I saw my husband cry.

Keith fell behind in school, of course. It was another great challenge that year. He’d declare that, “This schoolwork is a trigger….” Oh, my sweet son. If given a blow torch I would use it appropriately.

His 7th grade football career ended on the bench (not being able to participate), and most of his newly acquired friendships waned from his being gone so much. “But you fought through the unimaginable!” I told him, “it will get better!”

I’ve summarized and squeezed thin this journey of ours. I am still amazed by it almost 5 years later. I will forever be amazed by my little boy’s incredible strength, kindness and humor.

We use this year as a measuring tool for what our minds and bodies can handle when faced with somewhat immeasurable fears and challenges.

There are times when we click our tongues and slap our knees in response to each other, a comforting reminder of what crazy really is.

And we listen to the stillness, the quiet breathing in life.

“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare & perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky & want, more than all the world, your return." — -anonymous

Yammering bits and some blathering. Humor is my first language, my second skin, and my hello.

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