I have thought about this important year of our lives quite a bit. Rose got better and we all got braver. Little by little the fear loosened its hold on us. Everything got back to normal with the exception of the medication. The side effects seemed minimal.
We were blessed with a great year at school. It was wonderful to feel like both my children were in a good place. I had hours each day to think about my own future. The family balance was restored. We each had our own interests.
We toyed with the idea that maybe this epilepsy was really gone. That the seizures were just childhood developmental events. Rose was on level with her peers and healthy except for the ear infections.
I guess relishing all those good times makes the come-back-crashes more overwhelming. I have read what many epilepsy folks write on the internet. They lament that the seizures came back. Adults must give up driving for months or longer. It is a setback.
Those crashes just about broke Rose and me. We knew what they meant. The tether between us was restrung. The independence morphed back into dependence. It was hard not to resent each other. She felt we were too protective. I felt like I forfeited my freedom and career to save her. It was a difficult and challenging dance.
I do not mean that you should not enjoy every seizure-free second. I guess I wish the crashes had not been such a jolt to our psyche. I wonder if we could have been better prepared for the setbacks, so that we would not have felt a deep sense of mourning when the epilepsy resurfaced.
I wish someone had told us early on that we needed to fit our lives between the seizures, not put them on pause waiting for the seizures to leave her. It took us too long to figure out the damn things weren’t leaving. Maybe that is what I am trying to say to you. Get up and go on, epilepsy and all.
Here is the link to a poem I posted the day after Rose had her first seizure away at the university. It never gets easier. https://wordpress.com/post/seizuremamaandrose.org/556