I recognize that look in your eyes. It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream. Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures. Maybe you are feeling broken having just received your child’s diagnosis. Maybe you are ready to curl into a ball and hide because it all feels so overwhelming. I’ve been there. I’m still there sometimes.
As I reflect back over the past two years, I remember many times when I felt like I was Moses, alone on a mountain, growing weary of the fight. There were moments though, when people came beside me and helped me bear the load. In small acts of kindness, friends and strangers came along and held our arms up.
A year without seizures is a huge milestone in the world of epilepsy. Ironically, it is also terrifying. If Alyssa maintains her streak over the summer, then in the fall we will start to slowly wean her off of at least one of her medications. I have a love / hate relationship with those medications. On the one hand she takes large doses of mind altering drugs every day with a whole slew of side effects and an undetermined impact on her development. On the other hand, those drugs are keeping her alive.
Children rarely grow up to be exactly what their parents pictured. Many parents struggle to accept that their kids have chosen different paths. The difference is that parents of special needs children grieve because the different paths were not chosen by our children; they were forced on them.