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.