"When sailors thought the world was flat, that knowledge structured everything about how they thought and behaved. The news that the world was round caused a profound shift in behavior and in peoples perceptions of what was possible. The world did not change, but what was thought to be true about it changed. Because of this change, people sailed their boats very differently based on the new paradigm of the world being round."
~ A&R Turnbull
When I first read this passage I thought of how I was living in a flat world until the day we got Jackson’s diagnosis. But more recently when I came across it I started thinking about the convoluted world of Jackson’s seizures. Which, by the way, I am happy to report that we are now on Day 23 of seeing no seizures!
When we first saw the neurologist back in July of 2009 he told us there was a pretty good chance we wouldn’t be able to control Jackson’s seizures. After trying a few medications that never controlled his seizures we knew he had “intractable seizures”. So not only did I have to deal with the devastation of the diagnosis but also with the knowledge that I would go through each day watching Jackson seize. And quite honestly I got used to it. I hated every freakin’ second of every stupid, stupid seizure, but it became a part of our life. In reference to the above passage, I learned how to sail my boat differently. Now here we are on the 23rd day and I feel like someone told me the world is indeed flat and now I have to adjust my sails again. But I also feel on edge. I can’t seem to relax about it. I now wake up every morning thinking “Is today the day the seizures come back?” I was talking to one of Jackson’s therapists about it and she said “You’re living in limbo.” I am! Having said that, I can’t even begin to explain how wonderful the last couple of weeks have been. Jackson has been ridiculously happy, he didn’t cry at all in his therapies this week, he is interactive, cuddly, looking at us and focusing. It’s been amazing. Every night we play with the IPad and he is really interested in it. The other day he watched the whole movie Despicable Me (1 hour, 35 minutes) while sitting in his high chair. This week one of his therapists said “Who is this kid?” He’s a kid on a well deserved electrical discharge vacation.
I always wondered what Jackson would be like without seizures and now I know. I’m very thankful for that. If the seizures come back tomorrow, I will be sad. But I’ll be thankful that he got this long rest. And I’ll be able to carry all these happy memories with me.