Stand up

December 11, 2013Uncategorized 2 Comments

I want you to do me a favor. Think about what exactly you do in order to get up from sitting on the floor. Try to think it through, in steps, like you would explain it to someone who didn’t know how… Kind of hard, right? If you are an able-bodied person these things tend … Read More

My Hometown

December 10, 2013Uncategorized

It is funny that now, with my dissertation “done” I find myself a bit at a loss for words here. I started a post in my head about Thanksgiving and another one about our last hospital stay. I started writing one about how Esmé has started sitting up unsupported… But I think what I want … Read More

Walking it off.

November 24, 2013Uncategorized

Some of you may not know this about me…but for the last six or so years I have been working (on and off) on a PhD in Communication and Rhetoric. Since Ez was born completing this project seemed pretty unimportant…and I have periodically let that part of me–the professional academic part of myself– all but … Read More


November 14, 2013Uncategorized 1 Comment

Yesterday I was sitting in Panera working like crazy on my dissertation defense presentation–which is now five days away–and my cell rang. Someone was calling from my house. Ezzy was home with her longtime nurse…who pretty rarely has questions for me when she is watching Ez. Now, Ezzy has been having pretty significant pain (which … Read More

PCDH19 Epilepsy Awareness Day

November 7, 2013Uncategorized

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

Lasagna and snuggles

October 22, 2013Uncategorized 1 Comment

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


October 20, 2013Uncategorized 1 Comment

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

Leaving on a jet plane

October 14, 2013Uncategorized

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

The days I feel like I am failing

October 8, 2013Uncategorized 1 Comment

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

On new life

September 29, 2013Uncategorized

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