A night in the life of Epilepsy

2:50 am: I hear a scream coming from the family room, where Oliver sleeps on the couch. Did I imagine it or is he having a seizure? I wake Jason and ask him if he heard anything. He didn't. A few seconds later I hear it again. We both jump out of bed and run to the family room where Oliver lays with his right arm stiff , convulsing.

2:51 am: I scoop Oliver into my arms and whisper "I"m sorry". I repeat this over and over again for the next five minutes. What am I sorry for? That he's having a seizure. That he was awakened from a peaceful sleep by a seizure. That I can't fine tune the diet well enough to stop the seizures. That doctors don't know which meds, if any, would help our son. Most of all, I'm sorry that I have a gene in my body that's been passed down through generations and generations resulting in Oliver having CDG. Isn't that silly? I had no idea, I had no control over this. But if Jason and I had somehow known we were carriers and that our children might be affected, well, Oliver might not be here to suffer like this.

2:56 am: I look at Jason and tell him "I'm really scared, he's been non stop shaking for over 7 minutes now. Get the Clonazepam".

2:58 am: Jason returns with Oliver's "rescue med" which is really just a benzo that his body is fairly used to and will likely help calm his brain but take 20 minutes to do so, it's our best bet at the moment though, to give him some relief.

3:00 am: Oliver is still having spasms , shaking in between. With each spasm he yelps like a wounded animal and lets out a little cry. Whoever says seizures don't hurt our kids has obviously not sat with Oliver in their arms while he seizes.

3:03 am: Oliver is still shaking but the spasms are smaller and getting further apart. I'm still in tears, sobbing and wondering how I'm supposed to do this for the next 10-20-30 years. I start apologizing to Oliver again. For things beyond my control, and things I think I should be able to control. I glance into my bedroom to make sure Tobin is still asleep and has not been disturbed by his brother's screams. Tobin is still sleeping on the air mattress on our floor most nights. He says he doesn't like to sleep upstairs in his room alone while we are downstairs because he gets scared, but I think it's really his way to be close to us since we spend so much of our time taking care of his brother.

3:10 am Oliver is still shaking and I contemplate calling an ambulance. With this new diagnosis of LGS I don't know what the protocol is. Wait it out or call for help? Then I think they probably wouldn't be able to stop the seizures any sooner. So I wait.

3:20 am: Oliver's spasms are few and far between and the general shaking seems to have subsided. He looks incredibly exhausted and sleepy. I hand him off to Jason to blow my nose and get a drink of water. My throat is raw from crying and my eyes are bloodshot. I look at myself in the mirror and think I've aged 3 years in the past 30 minutes.

3:25 am: Jason lays Oliver down to change his diaper. Oliver rolls to his left side which is his signal that he wants to go to sleep. Every 30 seconds another spasm rocks his body and he jerks awake, then settles back down.

3:30 am: Oliver's spasms seem to be gone and he is sleeping again. I notice the cat is almost out of cat food so I fill her bowl. I put away some clothes I had folded earlier in the evening. It's amazing how much our lives just "snap back to normal" once the seizure passes. Jason and I talk about the seizure Oliver just had and how it compared to the other ones we've had this month. We wonder if it's from the Reglan we started a few weeks back. Jason says "I hope it is, because the alternative is that his seizures are increasing/progressing because of the LGS".

3:35 am: We turn off the lights and crawl back into bed.

3:50 am: Tobin wakes up crying and asks to sleep in our bed with us. As he crawls in I grab him tightly and apologize to him as well. He asks "what for?". I tell him: "For everything".