seizures Archives - Page 20 of 22

One Year Of Seizures

This week marks the one year anniversary of my son’s first seizure. It’s not an anniversary that we are celebrating, obviously. But it has been long enough now that it’s hard to remember a time before seizures, but when I do…when I see a picture from the “before time”, when I talk to someone who hasn’t seen him since he started having seizures…it’s hard to make the connection between then and now.

His seizures started around the same time we moved from Colorado to Pennsylvania. The geographic difference makes it seem as if it was a different family back in Colorado. Their son didn’t have any seizures. The family in Pennsylvania, their son has seizures that are still not under control. The Colorado family was hockey and balance bikes. The Pennsylvania family’s son struggles to find his balance at all some days. The Colorado family had an infinite number of possible futures. The Pennsylvania family is mostly trying to manage day by day.

Most of the pictures of the Colorado family are gone from the shelves. They were too hard to look at. We didn’t see our son in those pictures, we saw another child living another life. After a year, that other life stopped being our present and started to become our past. This is our life now.

After a year, though, we’re slowly making new memories and celebrating new victories with new pictures that are making their ways in to frames and on to the empty shelves. This is our life now, and we’re finding ways to live it. We’re getting more help for him and for ourselves. We’re starting to go out to dinner, both as a family and on dates. We’re finding friends. We’re playing teeball. We’re going swimming. We’re going roller skating. We’re exploring our new home and making the days that we have count.

For all the differences…for how unconnected and disjointed that the two families seem to be, they do have one thing in common. The Colorado family had a tough kid that wouldn’t quit and that, somehow, kept a heart full of love through really difficult times. He lived fearlessly.

The Pennsylvania family’s kid is the same way.

Really, Who Needs Sleep Anyway?

If you follow me on Twitter (@epilepsy_dad) or Facebook, you might have seen this update recently:

Last night was first night in months where we didn’t get up even once. No seizures that we heard. No nightmares. No insomnia from the meds.

The bags under my eyes, however, are a telling sign that the status update represented an anomaly. Most nights, my wife and I sleep just on the edge of consciousness. The doors between our room and our son’s room are open so that we can hear any sound that he makes. My phone is on my nightstand with the baby monitor app running so we can hear and see him while he sleeps. We’re on watchful guard listening for a seizure, or for him calling out or crying because of a bad dream, or because he just doesn’t want to be alone.

On any given night, we might get up between 3 and 10 times, which means we only get a few hours of consecutive sleep at a time. It’s been like this for months. Our informal system has been that whichever one of us that is less asleep will get up, allowing the other to let their guard down a little more and drift a little deeper into sleep. It might only be a few minutes or it might be an hour, but either way, my body welcomes the break and release from constant tension.

When you have a child with epilepsy, especially if their seizures aren’t fully under control, a good night’s sleep is a luxury. Seizures don’t stay in a nice convenient box or stick to a schedule. They happen when they want to happen and, for many people including my son, that can be at night and during the lighter stages of sleep. The kicker is that those times are also when the body and mind desperately want to rest and recuperate and, since the seizures equate to an unrestful sleep, he’s left more tired. When he is overly tired, he’s more likely to have seizures during the day, as well.

I feel like I want to end every post with some variation of “epilepsy is more than just seizures” because it’s the overall theme of our journey so far. Seizures are a part of epilepsy, but there is so much more. There is a lack of sleep. There is a being on constant alert. There is dealing with the stigma, and the uncertainty, and the lack of understanding. There is the inability to explain any of it, to him, to ourselves, and to the outside world. There’s so much to living with epilepsy that it would take too long to list out even a fraction of the ways that it impacts our lives. But right now, my son has gone to bed, and it’s time for me to get whatever bits of sleep that I can. I will hope for another night without one, but I will still listen for his call…a call that I will always and forever answer.

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.