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.
Also published on Medium.
I replied back to your tweet… you nailed this feeling exactly. I’m the mom with the epilepsy and my daughter and husband are on the other side of my CPSs, but it still impacts our lives. My lovely 9-yr-old switches to caregiver when I go into my tunnel and we are out. Even so, when things start to go well, we get excited–bracingly. Ride hope up and down and trying, trying to not get discouraged.
Thanks for commenting, Ouida. That must be hard on a 9 year old to see her mom have a seizure but I wonder how it feels to you to know she is there. I want my son to know that I am there when it happens and to balance that with the notion that we should still live our lives when we can. Riding the rollercoaster and staying encouraged can be hard, but I hope you’re succeeding! ~Dave
My son will be a year diagnosed on 10th March – he also has nocturnal seizures and this post resonates so much with me! Luke is 3 months seizure free (from having seizures every night & most days), and although I fully expect them to return at some point, I am enjoying the respite and celebrate the successes! Rx
Thank you for commenting and sharing, I’m so glad he’s had that freedom, even if just from the bigger stuff. I hope that it continues and that he continues to improve. I enjoyed reading your blog, as well. I know you’re not going to be as active on it, but I hope some day to read an amazing update about how well he’s doing. All the best. ~Dave
Have you tried Onfi?
Hi, Kristin. Yep, we’re on that one as part of the regimen. Seems to work, or at least things got bad when we tried to come off it. But too high of a dosage causes noticeably bad side effects. I know of a few other folks that are just on Onfi, though, and it works great by itself. We were told when we tried CBD that it has a known interaction, too, so we monitored dosage and levels pretty frequently.