I decided to be "brave" the other day and take Cole out in public. I know, I know - what was I thinking, especially after last week? I took Cole someplace where he was around someone that had a small cough. That turned into 101 fevers for two days and 3 tonic-clonic seizures in need of oxygen and rescue medication. We have slowly started to accept that we can't keep Cole in a bubble forever, so even though it was a little bit of extra work, he had fun being around other children. We know people who take their Dravet children on flights across the ocean, hiking, swimming, etc. They have just learned to accept that seizures are a part of daily life and choose to "live" it. We are inspired by them. So I made a goal to be more "normal" this week.
I got an e-mail announcing a one-day sale where everything in the store was 40% off, that day only. Cole needed jeans and I wanted to test the SPIO in public, so I decided to take a risk. I waited until the late afternoon and asked Brian if he would meet us there when he got off of work. I can not even remember the last time I had Cole in the mall, and I was ready for anything - so I thought. I set off armed with the iPad, sippy and stroller. Cole did really well! For about 20 minutes. The place was a madhouse. There were people and strollers everywhere! Brian came and I started to stand in line. Cole soaked himself, as he has been doing on almost a daily basis lately (blood sugar issues?). Brian changed him in the dressing room and kept his wet jeans off. I am still standing in line when I see a little boy in a flannel shirt and black spandex pants (the bottom of the SPIO) and no shoes, running around the store carrying part of a display! I'm sure people were thinking, "Where's his mother?" HI! It's me...over here, in line! The one who doesn't have her act together! At least he wasn't screaming ;)
I told Brian to just wait for me to finish so we could put some of the dry pants I was going to purchase, on Cole. I was in line for 45 minutes! At this point, any toddler is having problems being stuck in a store. Especially one with sensory issues. I finally get up to the counter and pay. I catch Brian in the corner of my eye, he has Cole in his arms and says, "Let's go. NOW!" I grab the bags, find the stroller in the midst of the chaos, and we start to run. No one really notices that Cole is seizing, because he is still conscious at this point and only jerking every 15 seconds. We book it out to the car and I prep the Versed on the hood.
After a few minutes taking care of things in the back seat, Cole started to come out of his post-ictal state and was drugged up. We decided to switch cars and have Daddy drive the boy since his long arms can reach back to the car seat. They headed towards home. As I was pulling out of the mall, someone rear-ended my car! It could have been a lot worse. There was minimal damage to the car and no one was hurt. We could have been a lot farther from home. I could have been alone. I just think that I am going to need some more time before I try to be "normal" again. What a slap in the face, to remind me that just going to one store for a sale, is a crazy idea. Having a controlled environment is so much easier for me and Cole. However, easier is not always better. I don't think we're ready to go anywhere intense soon, but we'll try again in a week or so. Maybe the grocery store?