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.
Many parents of kids with epilepsy are passionate about the push for medical marijuana because we understand the cost of every delay. Our children are dying while they wait for legalization. We have lost several children to seizures while they waited for their last hope to be approved by politicians who were more concerned with their own agendas than in letting us have access to a lifesaving plant. That is devastating and unacceptable. It is equally appalling that we would deny other parents the chance to save their children.
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.
There is a misconception in the outside world (ie: everyone not living with a person who has epilepsy) that as long as a person is not actively having seizures, all is well. That may be the case for some families üydealing with less severe forms of the disorder but epilepsy is a constant presence for many people, even when…
My head hurts and my lungs hurt and I’m tired and I want to take Niquil. That may seem like an odd way to start back at a blog I seemed to abandon millennia ago. Every other time I have tried to write though, it came out pretty angry. I don’t mean angry like just a little snarky. I…