Things I have learned, things I have noticed and things that might just be in my own head


Things I have learned since DC’s seizures began:

I have learned that seizures coming out of the blue at his age is more common than I realized.

I have learned that although I have been told many times, that seizures are not life threatening, they most certainly can be.

I have learned that when seizures begin at his age, they will most likely continue for life.

I have learned that all of the testing in the world might never tell us anything.

I have learned that I will not know if the medication is working until it doesn’t.

I have learned that this is going to be a very long road.

I have learned that “calm” will never be a word used to describe me……. wait, we knew that one already.

I have learned that I can actually drive while having a panic attack, but I would not recommend it.

I have learned that even if I wake up an entire hour earlier than usual so I can take a shower before he is awake and out of bed (because I am so panicked about being in the shower and not being able to see or hear him) that he has some sort of radar that goes off to tell him that I am awake.

I have learned just how quickly I can run up the stairs any time I hear a noise.

I have learned and understand that plenty of people experience this and go on just fine. I can’t get past the fear of him hitting his head on the way down.

I have learned that nothing is predictable…. My friend’s message to me says it best:

Our years with our kids have given us the wisdom to be able to have as much of a stable daily life as possible. The routine and the predictability of our day-to-day with them is all we have to keep us from losing it. A small upside to life with our sons is that we can, to a certain extent, control what our days look like, and we come to depend on that predictability just as much as they do. We know what to expect, we plan for every behavior, we know what every sound they make means. It’s how we cope. And having this happen doesn’t just pull the rug out from under you, it unravels the whole damn rug. I just hope you get some answers and the road to getting those answers doesn’t take you through hell and back.”

Things I have never noticed until DC’s seizures began:

I have never noticed (probably because I was so used to it) that DC’s dances at times involve him throwing himself on the floor.

I have never noticed just how long it takes him to take a shower because I have never felt the need to stand right outside the door before.

I have never noticed just how many sharp edges there are on all of the furniture in the house.

I have never noticed just how many times he feels the need to go up and down the stairs every day.

Things I have come to think may be possible precursors to his seizures:

DC’s first seizure happened on a Sunday. I specifically remember telling Mrs. H on the Friday before that I thought he was heading for a crash. He had been so overly hyper, happy hyper but over the top, laughing uncontrollably and talking about things he normally doesn’t really talk about, that I was sure his allergies were due to kick in. He was like that the entire weekend.

After this last seizure, when I spoke to Mrs. H, who had picked him up from work and drove him to his camp activity, she said he was very excited about going to camp (he always is), but more excited than usual. He also gave her specific details about what he did at work and what he was going to do at camp. This is not something that usually happens. We normally have to drag information out of him and when we get answers, they are usually standard DC answers. The biggest thing was that he said, totally unprompted “Say hello to Mr. H. for me”. I know many of you do not know DC personally, but those who do, know this is not anything he would ever say. This is not his manner of speaking. *Tam, the program director at camp also informed me that DC, while always excited to go to camp seemed to be overly excited that night. He even did his entire Arts and Crafts project (he is not an Arts and Crafts kind of a guy) and then some extra.

Things that might be just in my own head (or things I may be reading too much into):

When Mrs. H mentioned “Say hello to Mr. H for me” – I remembered the only other time I had heard him say something like that and it got me thinking. We were in Disneyland Paris almost exactly a month before his first seizure. When he met Ariel in the Princess Room, he said to her, “Say hello to Prince Eric for me”. I was blown away by that and actually mentioned it in my still unfinished post “Everything is Related – The Paris Edition”. The morning after his meeting with Ariel, he slept until 11:30!!!! The one and only time he has ever slept that late was when he was sick in Florida and even then he did wake up a few times but then went back to sleep. I normally start to think there is something wrong if he sleeps until 8:00 am. Granted we were exhausted, but even exhausted, he never ever sleeps that late.

When DC started coming out of his first seizure, he make a horrible noise that sounded like he was choking. I am told that this is normal. When he had his second and *Kim described the noise as a “weird snoring sound” I remembered that night in Disney, waking up and hearing DC snoring very oddly, so oddly that I shook him to make sure he was okay. He said he was and went right back to sleep. I am wondering now if he actually had a seizure during the night and I just didn’t know. He was so tired the following day, but I just wrote if off to travel, jet lag and the exhausting day we had the day before.

I don’t think  I will never know for sure.

So now do I worry each time he says or does something that before this happened would have been viewed as progress? I don’t know. I don’t know what I am supposed to be looking for.

Fortunately, so far the medication does not seem to be having any adverse effects. He has been going to bed much earlier than he ever has before but, quite honestly I really suspect – and I am not joking – that he is trying to get a break from me.