The day after a seizure and a late night in the ER you might be tempted to pull a full stop to your life for a while. After all, we were told we were very unlikely to ever experience another seizure. In fact, we were told it was about a 70% chance that it would not ever happen again. Not as good as the odds as “normal” families but hey, nothing in our life falls into that elusive normal category anyway.
Obviously we have to be in the 30%.
Watching TV Friday night, about to give the guinea pigs floor time and having had a relatively nice evening Charlie let out a scream and began seizing. 911, firetrucks, ambulance and the emergency room followed in quick succession.
The next morning, he was just Charlie. The Charliest Charlie that ever was full of love and hugs. Thus we decided we were just going to proceed with life.
The Women’s Seminary museum was hosting a Not So Spooky Halloween event with some crafts and a bit of history. That’s just up our alley, plus hey FREE events are the best. Louis was at a marching band event all day so we rounded out our party of six with a friend of Julia’s and headed over once the evening was spooky enough.
There were lots of crafts for the kids which they all loved. Ok we loved it too, even us big kids got to make them.
The day was emotionally draining. After you’ve spent the night in the ER you spend the next day watching every movement and noise your kid makes. Is he alright? Is he seizing? Oh god what was that? Is it starting again? What’s he doing?
Well right here he’s making a bead bracelet. He was even having fun.
There was glitter glue which terrified me but Miles seemed to think was about the best stuff ever to glop onto his mask.
Sometimes the most trite concepts are the most real. They’re trite because we’ve been saying them for centuries. We’ve been saying them for centuries because they’ve been true for the same.
An example is – LIFE GOES ON.
Here we are 24 hours later proving that one true. Life went on. Life was scary and terrifying for several hours. We once again learned things we didn’t know – such as it’s really not that easy to get a plunger of valium into the butt of someone who is HAVING a seizure. Yet – that’s the rescue medication we have. (Props to my husband and oldest son for making that happen while I was on the phone with 911 and getting my shoes on, diapers in the backpack etc.).
There was laughter, there were spooky things learned and seen. There was fun.
There was life going on.
Every once in a while we all have to cocoon to recover. For us, however, I think we do better most of the time when we break out and force ourselves back into life, embracing who we are and getting out there into the mix.
I’ll admit I kept a somewhat nervous eye on him for our time out. The passing thought that occurs is “What do I do if he has a seizure in public?”. The answer is “We’ll deal with it.” We’ve got anti seizure meds now. We’ve got a rescue plunger of valium for another emergency should one occur. We’ve got a kit of them we’ll be sending to school. (Yeah a teacher will have to do that at school if it happens. They actually know how to do it. Man their jobs are hard.)
So while this was our Friday night scene….
this was our Saturday night…
We’ve got this. No matter how spooky and scary it gets. We’ve got it.