Oh, Friday. Slightly smokey Friday. What I wouldn’t do to be sitting out in the hazy sunshine right now, on my favourite day, enjoying my coffee….. but no. This morning my Benny had another seizure in bed, and i sit here now, in his room, keeping watch. He has been given his rescue medicine, which finally seems to have taken hold (last week they did not work, and we spent another night in emerg/pediatrics). Gary brings me my coffee and toast and I will sit here for a couple of hours probably, until I feel that he isn’t going to have another seizure….. i don’t know how i can tell, its a gut feeling by this point. He sleeps soundly for the most part, after having the rescue drug, but seems to move uncontrollably in his sleep every so often (what the heck is that i wonder?) Lips are no longer on the blue side, so my stress level comes down a bit.
This is the reality. At any time (and quite a few times so far this year) this kid can have a seizure that he needs meds to come out of. We’ve been in emergency three times so far this year because of it and quite frankly, i feel the stress of it deep in my core. Leaving him with people who don’t know his normal is such a hard thing to do when even Gary and I have trouble recognizing his many forms of seizure like activity. At this point, while this is going on, I can’t even believe we made it to Italy for our anniversary. Thank god there were no episodes when we were away. But I guess it is all about perspective.
On a really sucky note, i was at a seminar in which they stated that full time caregivers live, on average, 10 years less than others. Great. I really do get it. I used to think i coped really well and that stress wasn’t an issue. I mean, I work really hard at doing things for my own self care. I find time to paint, to exercise, to eat out, go on the odd getaway without kids….but the stress is always there, lying just below the surface. I feel it quite a bit more now than I have for a few years. That makes sense, of course, with Ben getting older, physically bigger, seizures harder to manage. I longingly wish for freedom that I don’t really have, no matter how often we have respite, being carefree is not an option. I miss my carefree self. I dislike being on edge, worrying. I dislike really never being able to just go for it…. say yes! to an evening out, a trip, a golf game, for crap’s sake. I know I am complaining here, but that is just what I feel like i need to do right at this moment. like it or not:) Believe it or not, I know, in the big scheme of things, this ain’t so bad. Pity is not what I’m after, either. No quite the opposite. I know the value that Ben has brought to our lives and given us as humans. We have been lucky to have received it. The love for this boy is immense. But that doesn’t make it easy.
So, I am still sitting here, on his bed. He has made some pretty crazy movements in his sleep but I am still very very hopeful that he will wake up in a couple of hours with a big smile. And I will relax at this point. For awhile. Checking on him every few minutes and refusing any invitations to go out and enjoy the day. It is just another day in the life……..