The next day after the in-store seizure was a roller coaster, or maybe I should say circus. I felt like a ringmaster, trying to weave a coherent theme between all of the chaos. One minute Cole was a clown, the next a ferocious tiger attacking his trainer. Lots of hitting, kicking, spitting, pinching, screaming, crying, yelling, and so on. He even started to bend my fingernails backwards. What?! An hour later, he would be pretending to take my order for chocolate cake. Then he would become a super-sensitive-needy diva that wanted to be held constantly, forcing me bend to his will like a contortionist. Instead of a constantly revolving sideshow, maybe it was more like Jekyll and Hyde?
Regardless of the terrible day, I was moving forward with plans to see the actual circus. I've mentioned before that he has not had back to back tonic clonics without illness for a while. So, why not take our chances? We could always leave.
Cole has NEVER been in a place with that many people before. The lights, the noise, everything was overstimulating. He had to take multiple breaks and wander outside from the chaos, but the biggest incident did not include any rescue medication, just an extra pair of pants I had thankfully thrown into the bag. We did bring the oxygen in with us this time ;)This was not the circus of my youth with one ring in a small tent erected on the county fairgrounds and sawdust on the floor. It was a full on production. Screens, fireworks, smoke, songs and dance...it was more like a Disney show.He loved it! He woke up the next morning and the first thing he asked was, "We go to circus?"He roamed from seat to seat, but liked sitting in the middle of the aisle best. He has been swinging the sword around constantly since ;)I'm going to admit that I cried during the opening number, because we were doing something that I had before thought was impossible. I've turned into such a sap. I am so glad that we took the chance and went.Cole's favorite part was the elephants.As we went back out into the rainy night, Cole proclaimed, 'That was fun!" then said, "I loves elephants!" Back to our own three rings of disarray. Who knows what we will try next?
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What a fun experience!! I"m so glad that you made it through with out incident. I enjoy reading about whats going on, even if it includes mention of bodily fluids :)
ReplyDeleteThat is so awesome.
ReplyDeleteDitto what Erin said! It's awesome that Cole got to go to the circus! Can't let those seizures control your lives! Cole is so young, it's wonderful that he doesn't have any anxiety, fear or embarrassment about having a seizure in public--as he shouldn't since they aren't his fault! As long as you guys are prepared with phones, meds & O2 should he have one, go out and show the world how much fun a kid with Dravet can have! And educate others about epilepsy as you go. :) Love you all!
ReplyDeleteI'm glad you got to go to the circus! The elephants REALLY are the best part!
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