We are about to enter November which is Epilepsy Awareness Month. As things for the organization have really begun to go, it is sink or swim now……Facebook has really taken off with people sharing my personal story and My Epilepsy Story. As people share the photo of Samuel and I, with the quote “Epilepsy is not beyond a cure, it is simply underfunded.” it makes me smile, yet my heart still breaks. I look at that photo and think, I will make sure we don’t go through all this pain for nothing….
This journey is so uncharted territory….You see most people with epilepsy that are in the 70% that are responding to treatment, choose not to tell people that they are living with epilepsy. This is not an easy journey to go on, but it is the road that I must take. I must take it for myself, my son, and the 30% living with epilepsy that are not responding to treatment. Keep me in your thoughts as I am about to set on this journey and I do not know where it will lead….lots of new things are ahead and that is scary. Putting my epilepsy out there for others to see is hard, but what is really hard is putting Samuel and his story out there for others to see. People are judgmental in this world and can be cruel…..I know that we need to share Samuel with others because he will leave an imprint on their hearts.
So the song in our house these days is “Say” by John Mayer……Listen to it if you haven’t heard it before. I would post it on here, but for those of you who know me, know I can’t figure out how to do that 🙂