Watching my child have a seizure for the first time was probably one of the most frightening moments of my life. Finding out that she had epilepsy was as painful an experience as I can recall. I felt sadness, depression. You almost grieve for what you perceive as the loss of a healthy child and what degrees of changes she will have to experience. You worry that your child will not be able to accomplish their dreams. You always wonder will it hinder her in making friends. Will they understand?
After her first seizure over a year ago, it changed our whole family dynamics. Doctor appointments, tests, medications, side effects from those medications, then new medications with new side effects, speech therapy, etc. It seems endless. Probably, I am a little overprotective. For instance, if I can avoid my husband sneaking out with her, she is in my presence at ALL times. Since I'm lucky enough to work at home, she is always in my peripheral vision. I overcompensate due to guilt for the lack of time I cannot spend with her, because I have to work. I worry, will she outgrow this?
In the picture above, she had a seizure that day. It usually leaves her lethargic for about an hour or so, and then she usually bounces right back. Her neurologist has decided to titrate her medication, and we will go from there. This happened a few days ago, and so far so good. Back to her normal little "Bumble Bee" self.
It's a rollercoaster ride, and there is no "off" button; so many dips and turns, but I want Destini to ALWAYS know that I will lay beside her, I will cry with her, and I will love her through it all!