We tried to attend a family bbq last night, again with the high hopes.
The bbq was at a nice familiar park and what do kids love to do at the park? Right. Play and run around. Parks are not designed well for children with epilepsy. There is more cement than you would think at a park and so many sharp metal edges on the play structure, not to mention the height of the play structure. Even in the small kiddo play area the entire sand box was outlined with a large cement curb. I'd like to meet the Brain Surgeon who designed this play area. What moron puts a sand box next to a cement sidewalk? It's like a slip-n-slide, even I almost fell down. You cannot safely run around on cement with a thin layer of sand over the top of it.
Seizures are now in full control of our lives. I had to shadow the Doodle and hold onto the back of his shirt the entire time. I brought the stroller thinking he might sit in it and do a puzzle or eat giving me some time to visit with my family. No chance. It was HI and then a couple of hours later after the chasing ended, it was BYE. I was so frustrated I couldn't help but cry the whole way home.
He only had one seizure while we were there and I had a hold of him so he did not get hurt. I'm trying to think which seizures are worse since we've now experienced them all. We started with the severe grand mal seizures that lasted about 1 minute each of full body convulsing. These were less frequent and usually only happened first thing in the morning. After a grand mal, he would be exhausted and sleep. He would feel so crappy after one of these grand mals that he would want to sit and be held. By the time he felt better, it was a rare occurrence that one would happen right away again. He's had the staring seizures and I think unless he's driving a car, these are the easiest to handle. He doesn't fall down, he just stares. The little short spikey seizures are what are so very hard to control and deal with on a daily basis. We can't go anywhere, I can't put him down and he can't play. It's physically and emotionally draining and has become impossible to hold a child that does not want to be held during the waking hours of the day. The fatality rate of a person dying from having a seizure is rare, it is the result of the fall and/or the injury that can be devastating. I keep thinking about John Travolta's son, Jett, and how he died.
Basically, I need to find a padded room somewhere or an Iron Man protective suit for him to wear in order to feel safe putting him down. It's almost like The Boy in the Plastic Bubble but with large amounts of padding.