Sur-reality

I have decided, in my sleep-deprived state- that this whole thing is rather surreal.  I have spent nearly every day of the past year trying to make sure the medication was taken on time, that the diet was sound, and that Jake got enough sleep. I have worried about these details to the point of making these issues the top priority in my life - and rightly so as he is my son and it is my responsibility.

Today, I felt as though I was betraying some ancient secret that would bring about the end of the world, as I explained to our Nurse Practitioner, Molly, what things would trigger Jake's seizures.  I just listed them off - and then felt like I had opened Pandora's Box by even suggesting that we allowed these triggers in his life to induce the very thing I have been trying desperately to prevent!

See, surreal.  I am inviting the same seizures that I have been blocking out for months now - like those people with Stockholm Syndrome who go from fearing their captors to actively entering into relationship with them.  And I feel a little dishonest about it.

Perhaps it is my lack of ability to embrace them - to welcome them warmly - that causes them to elude us.  We have withheld medication, played the game that required intense concentration, sat too close to the screen on my computer while a movie played and even stayed up until after midnight as lures for the seizure to show itself. But it remains elusive, like a big cat who knows he faces extinction and keeps hidden in the bush.

Jake is sleeping now - thank God because it is well after midnight. I am sure that tomorrow will bring the seizures to us so that this very accomplished staff can review the information and give us insight into how we can give him his life back.  For now, though, I will try to drift off to sleep like I did when he was a baby: listening for any sign of trouble while trying to recuperate for what tomorrow will bring.