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.

A Sound To Break The Silence

For the past eight nights, our house has been silent. Our son has gone to bed and woken up without a seizure, without a sound. For the last few months, he has a string of seizures in the early morning, echoing their call throughout the house. But for just over a week, shortly after starting the ketogenic diet, his seizures had stopped, and I had just begun to forget that sound. I had just begun to stop expecting that sound.

But then, a day after he moved back in to his own bedroom, a sound carried up the stairs and down the hall. At first, I thought it was my wife singing in the bedroom, or the call of the fans rumbling through the hockey game on the television. But after my wife shut the door, and after I muted the television, the sound once again filled the room. Down in his room, our son was having more seizures.

epilepsy seizure

I got ready for bed and headed down to his room. Our monitors are still not here, and as much as our bodies resent the lack of sleep that came with having him staying in our bed, I wasn’t ready to trust that his seizures were temporary and that they wouldn’t cluster. So I found a space in the corner of his twin bed, and I laid with my son until he fell asleep. I listened as he had another handful of seizures, and another few in the early morning.

Although we are still very much struggling with some lingering issues during the day, I was eager to return to a quiet house at night and to a restful sleep. I was ready to assume that the noise I heard at night was my wife watching some terrible show on CBS or a drunken neighbor stumbling home after a night out. But for now, I must still keep that part of my brain active that can pick up every sound and distinguish Madam Secretary from a myoclonic seizure, from knowing which is damaging a brain in my house and which is just a seizure.

There are days like today when I wonder if I will ever sleep soundly again. I wonder whether I will over not worry that every sound I hear is my son having a seizure and whether I need to rush down to his room to make sure he has recovered. Living on the edge, all day and all night long, is taking a toll.

There is so much uncertainty, so much to react to, so much to be cautious about. But I am hopeful for the day when the worst thing that I will hear at night is another show on CBS.