We are coming up on the first annual PCDH19 Epilepsy Awareness Day on November 9th! It is so exciting to finally have a day devoted to spreading awareness for this disorder, which, as you all know effects my lovely little girl. It is such a simple thing to decide to just do this kind of … Read More

I know you all already know that I am completely obsessed with Esmé. I think she is just so spectacular…and being away from her for a few days has just made me even more in awe of her. I just find myself staring at her adorableness. It is also pretty cool that she managed to … Read More

So I did it. I flew to Rome for three days to attend the World PCDH19 Conference. I didn’t think I could/would make it work because, honestly, the thought of leaving Esmé made me dizzy with fear. But, as my step-father said–I had to decide whether I was really “in this thing” or not. And … Read More

I didn’t think I was going to be able to do this…but tomorrow I am getting on plane heading for Rome. In Rome I will be attending the World PCDH19 Conference which is being held by our partner organization, Together for PCDH19 Research. We will be working with the researchers and conference attendees on how … Read More

I really try to be upbeat. There are many days I don’t have to try…it isn’t that I am naturally a happy person (because I am really not). It is that I live in a home with the happiest kid you could imagine… How could I not be upbeat? But there are days–like today–that I … Read More

Ezzy became an older cousin two months ago. She has three older cousins is now no longer the baby of the family! She is pretty excited about that…she has things to teach this new little girl, namely: how to get extra gifts out of Mema, how to play a doggy guitar with your teeth, and … Read More

Alas, I have not been the best at keeping up this blog lately. I think about it regularly…about what I would like to share with my readers…about what has happened in the weeks since my last post. I just haven’t made it all come together. But here I am again. And as I write I … Read More

So today is my 31st birthday, which is lovely, of course. The last year has been sort of amazing/crazy/bizarre. Exactly one year ago today marked the escalation of Esmé’s seizures from something that was troubling to something that was completely and regularly petrifying. On August 8th of last year she was admitted to our local … Read More

I was driving last night while listening to my local public radio station. I caught part of TED talk and interview with a woman who rowed across the Atlantic in 103 days. I wasn’t in the car long, so I am certain I have missed all sorts of relevant details about this woman and her … Read More

I cannot say how much good it has done me to have this space to express myself. More and more I realize that language has so much to do with how I make sense of my feelings and the world. Writing here has been tremendous for me to find my new balance, to vent, to … Read More