seizures Archives - Page 13 of 22

By His Side

A noise stirred me from my sleep. Instinctively, I rolled to face the monitor. Even though it was on the dimmest setting, my eyes struggled to focus against the light of the screen. I closed one eye completely and squinted the other until I could make out the image. Then, another sound. That sound. The sound that still breaks the silence of the early morning. The sound that wakes me from my sleep and tells me that my son’s brain has lost control.

Some mornings, I watch the screen to see if my son can put himself back to sleep. But this morning, I could tell by the way the sound echoed through the halls that it was a bad seizure. I slid my body off the bed and felt the cold floor beneath my feet. Keeping one eye closed did little to help readjust to the darkness. I navigated my way through the kitchen on instinct until I reached his door. I felt for the handrail and made my way down the stairs. Halfway down, my eyes finally caught up to the rest of my body and I could make out the bottom of the stairs. I swung myself around the banister and landed at the foot of my son’s bed as he sat upright and started to cry.

I write a lot about these early morning hours. These are the hours when our unwelcome visitor makes its presence known. These are the hours of sounds, and seizures, and tears. Of scrambling down stairs and early morning comfort. The hours without sleep, when there is nothing to do but think about our lives…my son’s life.

I wonder if these trips to his room will ever end. I wonder if our house will ever be quiet again in the early morning, or if I will ever be able to let my guard down. I wonder if this is his life, destined to call out into the night for the rest of his days. I try not to think about who will answer that call when I am gone. On that night, I was there, like I was on countless other nights. I did answer the call, like I will for as long as I am able.

I crawled into bed with him and sat next to him. I rubbed his back and told him that he was okay, that everything was going to be okay. It didn’t feel like a lie when I said it, but it didn’t quite feel like the truth, either. After a few minutes, he started to calm down. I helped him lay back down and covered him with his favorite green blanket. He stuck his fingers in his mouth as he closed his eyes. I laid next to him until his breathing slowed and the sound of him sucking on his fingers faded to silence. Then I stayed a little longer, letting my own eyes grow heavy, and fell asleep by his side.

Throwing It Back

We walked along the shore of Atlantic City. The beach was quiet with only a few other souls in view. The sun warmed the winter air to a comfortable temperature and cast stark shadows of the shells on the sand. The seagulls circled silently around us riding the current in the air. The waves rhythmically pushed themselves ashore. They darkened the sand to an almost black and erased the footprints that my son had left moments before.

That morning along the beach, my son took to launching enormous clam shells back into the sea. The inhabitants had been the unwilling dinner guests of another sea creature or one of those circling seagulls. Now, their empty shells laid scattered along the shore. I watched as my son scurried along the sand, finding the biggest ones, and brought them up to the water’s edge. The ocean had given up the shells to the land and now my son was sending them back.

Since my son was young, he has always liked to throw things in the water. He liked to see how far he can throw something against the limitless backdrop of the ocean. There were no walls to bounce off, no cars to avoid, only infinity against which to test his strength. After he hurled an object into the sky, he would track it through the air until it reached its destination. Would it skip or would it splash? Either was acceptable, as long as it was far. On the really good ones, he’d turn to me and ask if I saw how far it went. Of course I was watching, I told him, but he was already looking for his next projectile.

As I watched him throw shell after shell, I thought about the things I’d like to throw into the sea. I’d start by taking his seizures from him. Like a piece of paper, I’d crumble them up into a ball until they held their shape. I’d grip it like a fastball and wind up with enough torque that, when I let go, the seizures would disappear over the horizon. I’d do the same with his medicine and their side effects. His learning and attention issues would be the next to go, followed by his fatigue and ataxia. Over and over, I’d crush these afflictions into dense spheres and throw them with all my strength. Whether they skipped or splashed, I only want them far away from my son, somewhere at the bottom of the sea.

Getting Unused To The Sound

We’ve lived almost every day of the last two and half years with the sound of my son having a seizure. Usually, in the early morning, the distinctive sound my son creates as his body tenses and contorts echoes through the halls until it reaches my ears and stirs me from my sleep. For two and a half years I have been on guard, listening for that sound that served as an alarm calling in the dark. I’ve spent most nights periodically waking to watch and listen to the video monitor. This has been our routine. This has been our life.

When his seizures started, I would rush to his room with every seizure and lay with him until he fell back to sleep. Sometimes I would catch another seizure when it started. It was somehow comforting being there with him when they happened, from beginning to end. To hold him, to rub his head, and to let him know that I was there and that it would be over soon and that he would be okay.

As time went on, my son started putting himself back to sleep before I could reach him. I started watching the monitor as he came out of a seizure to see if he needed me. More and more, he would simply turn over, pull the blankets back up to cover his body and fall back to sleep. As much as I liked being there with him during a seizure, the new arrangement gave me a few extra minutes of sleep.

In the last month, we’ve also been able to string together (we think) a few seizure-free days in a row. I say “we think” because some of his are so short that they are easy to miss, especially in the middle of the night. But on a few of those nights, he was with us and he did not seize. He even had his first seizure-free week since they began.

I felt like we turned a corner. We made the most recent change to his medications a few weeks before those seizure-free days and I almost let myself believe we had solved the riddle. But then my son got sick and we were again visited by our most unwelcome guest. He rides such a fine line between seizing and not that even a common cold can undo a streak.

Hearing seizures in the middle of the night had become such a part of our routine that, when they stopped, it was easy to fall into the trap of thinking that they were gone. I stopped thinking that a life without seizures was possible, but when we had a week without them, I was too quick to assume that they wouldn’t come back. I felt as if we had been lifted from this unforgiving place. When they did come back, I fell from such a great height that the impact nearly crushed my spirit.

As grateful as I was for those days without seizures, they tugged at my desperation. They opened me up at my seams and stuffed me with false hope before closing me off. Now I’m pulling at the stitches trying to free myself from unrealistic expectations.

The reality is that the sound of a seizure will be a part of our acoustic landscape as long as our son is living with us. Even if we see another stretch of seizure-free days, the threat of another will always be there. There is no escaping its reach, no getting unused to the sound. The only thing I can do is respond when the alarm sounds, which I will do whenever I am called.