Seizing at the Pool

Sometimes reality bites… and sometimes it is just so freaking scary that it is beyond belief…

Also…

Six months count down starts again.

We let our guard down a little… 4 weeks passed… everything that seemed to be like the other shoe falling last weekend… we got through finals and graduation for Adam and everything from the weekend and we made it through all of the stress…

And LAST Saturday was 28 days.

Today was 35 days…five weeks

Today, Amandya and three of her friends descended upon the pool (the one you are SUPPOSED to have a pool key for to get in… we let in the kids Amandya was meeting so she could be a kid… so she could have fun and be a teenage girl and relax).  About an hour into the swim… one of her friends hoisted her up out of the pool and laid her on the edge before we could ever get around the pool to where they were standing.  He saved her life.

Reality smacked her in the face.

What would have happened if she had been mid swim rather than standing at the edge.

How long can people live without oxygen

How can you tell, if someone is mid-swim, that they are seizing…

reality sucks… but now she is starting to realize that there is a reason that we worry and that we stress.

It was refreshing, in a lot of ways, to see how the people at the pool reacted to the crisis.  There is no life guard at our pool… but the guard had just showed up about 20 min before the seizure.  The people all wanted to know if we wanted 911 called, if cold water would help, if gator aid would help, if there was anything they could do to help… which none of it would have helped right at that point in time…

Reality kind of bits for daddy, too… one of the people at the pool who offered to help was in extreme earnest in helping.  When we told her it was epilepsy, she simply said, “oh… okay, I understand.  I work with Special Needs kids”… it was the first time that he had to really come to grips with the fact that she really is, in a lot of ways, a special needs kid.  He was thinking… she just has seizures… she just has epilepsy… but really… that means that she is special needs… she has a condition that means she may need to have someone help her in a given situation.  He thought about pointing out to the lady that Amanday is fine, she just has epilepsy… and that is true… but… it means that her needs are different than many of the people in her class, many of the other people in her school… so … she has special needs…

Me… I ache tonight.  I had a headache to begin with (our morning walk I didn’t drink enough) and the 7 miles was a little long given that we hadn’t walked for more than 2 weeks so my toes were achy.  Tonight… tonight I feel like I’m in the middle of a flare and I ache almost everywhere…

If anything good came out of this, though… her three closest friend “got” to see and understand what happens so I know they know what to look for in case it happens when they are around again…

The one thing she did, after we got her home and out of the car (she managed to get a ride home from the pool rather than having to walk… go figure) and after she threw up all over the front porch… was to post her new status on Facebook.  Somehow I didn’t have the heard to correct here on her language… The “F” word isn’t totally acceptable, but someone in connection to epilepsy… the sentiment just seemed appropriate today.

Funny… now she is telling me that I’m not a failure because I can’t fix this… that it just matters that we are there when it happens… it doesn’t mean I don’t feel like I should be able to fix it… but it did make me smile.

I got two really good kids… I’m really lucky… and proud.

Now we went from 1250 mg Keppra to 1750 mg of Keppra… 750 in the morning… 1000 in the evening… maybe that will get this under control… if not… probably new meds…

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