Tuesday, April 19, 2011

An Uncelebrated Anniversary

I knew the call was coming, but did not expect it to be an anniversary moment. On the drive to Charleston with my mom and sister for what is known as our Annual Girls’ Weekend, this being our second, I got a call from Ben’s neurologist. Last year, while on the 1st Girls’ Weekend (cannot say annual when it is the first, a little pet-peeve of mine from my event planning days) I was first informed of Ben’s seizures. So this call was ill-timed, yet should have been expected, because life is like this – when you are trying to get away from it all, it catches up with you and lays it all in your lap. But I was much more experienced this time. I took the information in stride and made the follow-up appointment for Ben for the next week. With an action plan set up, I was able to file it away for the long weekend.

Lucky for us, the neurologist was able to see us immediately because her trip to Japan was canceled due to the earthquake and tsunami – once again one of life’s ironic moments. It also meant that because her schedule was wide open, she had ample time to go over Ben’s extensive seizure activity in pain staking detail. She spent at least one hour going over each reading and explaining how the seizure moved across his brain to different areas.

It is all a blur, but I remember the high or low points, depending on your attitude and state of mind. Ben could have a “real” seizure – one with the convulsions, the ones that scare the hell out of me and most people. Because he does have a thin corpus callosum, it allows the seizure to go to both sides of the brain which can “help” one of these stronger seizures take hold, just a small benefit of having some of your corpus callosum. She also said that these seizures affect Ben’s language and learning. While having one, he cannot learn, and from the looks of the charts, Ben is having seizures VERY often. In fact, while sitting with the doctor during the appointment, she observed Ben having a number of seizures.

We left with a plan: increase Ben’s current medications slowly, keep charting his seizures, come back in early May and try a new medication if the current one does not significantly decrease seizure activity.

I usually hold myself together during an important doctor’s meeting for Ben. See me an hour later, and I look and feel like a little bit of life has been sucked from me. I am drained emotionally, physically and mentally. And after countless appointments, you would think I would remember this exhaustion, but I don’t. It hits me, I go down and then later, I realize what happened. After some rest, I am back to normal. Perhaps I should build this into my calendar as a reminder of the appointment aftermath. A small "AA" notation to remind me I will need some down-time to process the experience and then come up with my own 12 step coping plan.

And step one, I’ve got Ryan lined up for the May appointment.

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