As the weeks go by and we move further away from a doctor’s visit or an MRI or from having to discuss complex partial seizures, I get real positive. Positive to the point that I am in some state of denial about our son’s “condition.” Though I’m conscious and aware of giving him anti-seizure medication twice daily, it feels no more threatening then handing the boys gummie bear vitamins. What I secretly think is this: the doctors are wrong. Soon enough, a neurologist will say, to my face, “your son no longer needs these meds because he is fine.”
What they actually say: “We aren’t ruling out TS (a rare genetic disorder) as the reason for the seizures or the mass in his upper right lobe.” So what’s this all about? Why don’t I have more answers? How are we to live in this state of in between? In between is the spot smack dab in the middle of the total truth and total ignorance. A daily ritual of having to constantly struggle between total panic and staying calm. One scenario…we continue to increase the dose as he grows and the side effects start and he’s a monster to live with. Another scenario…we continue to increase the dose as he grows and no side effects appear and he’s a happy, well adjusted boy. Another scenario…the seizures return and meds don’t keep them away, we discuss brain surgery. So which one is it? All of the above or none?
What irks me some days is how to get from breakfast to dinner and not lose my mind.
