Dear Jakey,
Last night was G-Pa’s golf tournament for the Epilepsy Foundation. You have somehow become the posterboy for epilepsy around here – not sure how or why that happened but a lot of people came out to golf and many came in support of you. I wonder what you think about it. It always seems a little ironic to me because we do these things to raise money and awareness for epilepsy but it seems like these events are hard on you. Your schedule is all off and you have to deal with people making well-intentioned but weird comments. Most of the time you go to sleep and I can’t blame you. Sometimes I wish I could join you! 

It feels like we pimp out out sometimes and I am always torn up about it. Although for the most part I think the greater good is worth it – raising money and awareness about seizures so you and others can have a better life – all of me doesn’t think it is worth it. Sometimes I feel like people use you to feel better about themselves – like “thank god that’s not me” or “my child is not that bad”. Sometimes people actually say that and while I know they don’t mean anything malicious by it, as your momma it makes me feel so defensive and crazy. But again, I keep going back to the greater good – we (and by we, I really mean you) teach people so much about strength, love, priorities, endurance and bravery. You are a rockstar.

So, my boy, I promise that tonight we will be right on schedule -eat when you are supposed to, stand when you are supposed to, and fall asleep when you are supposed to. Your job is the same – eat when I feed you, stay in your stander for an hour today and sleep way better than last night. Sound like a deal?