seizure Archives - Page 14 of 15

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.

The Time Before Epilepsy

I was cleaning up my photo album on my iPhone when I came across this picture.

This is the last picture that I took of my son before he had his first seizure. We were on an exploratory trip to Philadelphia ahead of our move here, and my son and my wife had spent the day looking at houses. To reward him for his patience, we took our son to Dave & Busters for dinner.

Looking back on that night, I think I saw him space out a few times, but I chalked it up to being exhausted from the day’s activities. Seizures weren’t a part of my vocabulary yet. So we finished our dinner and turned in our tickets for prizes, and we walked down the stairs towards the exit without any inkling of what was about to come.

Six months later, I look at other pictures of him that I took before epilepsy when life was simpler and my heart breaks for that boy in those pictures because of what he will eventually go through and be living with. That boy that never had a seizure. That boy that never needed an anti-epileptic. That boy that was never too tired to go to school. That boy that never threw a punch or spit at his parents. That boy that never hid under a chair and cried because he didn’t understand what was happening to his body. That boy that never had to feel like he was any different than any other boy.

As much as I wish my son didn’t have to go through any of this, I never wish that I could have that boy back from the pictures. This is my boy. This beautiful, strong, smart, energetic, epileptic, courageous, compassionate, empathetic boy is my son. His epilepsy is a part of him and it has changed many aspects of our life, but it could never change how much I love him.

Nothing will ever change that.

Epilepsy Is More Than Just Seizures

If you ask someone what they think of when they hear the word “epilepsy”, they will most likely answer “seizures”. That certainly would have been my answer if you had asked me even just three months ago.

Now, though, the seizures only scratch the surface.. They’re the easiest for us to identify and to label and put in to a box. What is harder to identify and harder to quantify are the many other symptoms and side effects of the seizures and of the medicines that are running rampant inside of his body, and for which we have no adequate words to describe to anyone else, never mind to him.

How do you explain to a five year old why he gets so sad that he wants to run away, hide, and cry? How do you explain why he can’t control his emotions and why we have to hold him down for an hour or more before bed when his impulses take over and he is hitting, and spitting, and biting? How do you explain why he can’t control his body, why he is always so tired and why he constantly trips and falls when he used to be so agile?

I can’t give him a reason when he asks why this is happening. I can’t fix him when he asks me to make him better. I can only tell him over and over that I love him when I am holding him down until his anger passes. I can only try to make those moments when he isn’t too tired to function feel a little more normal.