I was meaning to post this video and discussion last month since November is both the anniversary of Kid's official diagnosis and also Epilepsy Awareness Month. But I have to say that I'm trying to push down my state of worry (and moments of hopefulness... lest they be dashed) and talking about it or thinking about it has been difficult.
Today was the last day that Kid will take her anti-seizure medication. This morning she had her last dose... maybe forever... maybe for now. The uncertainty is overwhelming.
Today, by chance, the nurse who came to give us our life insurance physicals revealed (for no apparent reason) that her son has epilepsy. Boy did that bring up a lot of feelings. His is not the same as Kid's but not that different. We had a lot to talk about and it really made me wish that there were more support groups geared toward the parents. Many places don't have a support group at all and if they do it is for caregivers of adults with epilepsy. We had so many things in common... the mood swings... unexplained fevers and vomiting... the bed wetting (who freaking knew? Kid wet the bed twice since weaning her meds and I guess that can be a sign that she was seizing... all new levels of worry are entering my mind).
So I'm sitting with it. I'm just trying to stay the course. I'll talk more about it when I can do it without having to think so much. I'm also thinking of taking the family to D.C. in the spring and participate in the annual Epilepsy Walk there. It might be nice to talk with other parents. It might also do some of them good to see a child who has (hopefully) made it to the other side of their journey... give them a little hope that there (sometimes) is an end.