October 22, 2012 1 Comment

Ok, last night I had a bit of a melt-down…well, at least in my head. Ezzy was in my arms so I had to hold it together. There is a beautiful little girl out there who was born the same day as Ez. She is lovely and smart and quick to do oh so much. … Read More

I’m Eating Here

October 19, 2012Advocacy, Special Needs Child No Comments

So, honestly, for every few people out there who make you feel that the potential for human kindness is limitless there is an asshole…placed there to balance out the system. I have been a bit on a high about how thoughtful and kind people can be when given the chance. For this reason I have … Read More

That’s funny, right?

October 17, 2012Special Needs Child 1 Comment

So, lately, I have really been struggling with my sense of humor. You see, since having Ez I find myself saying things that I find funny…but that make other people super uncomfortable. True, I have always been that way…at least a little bit. I still cringe thinking back at a few of the off color … Read More

Scientific Prayer

October 15, 2012Special Needs Child 1 Comment

We are sitting in a room with two doctors and a genetic counselor discussing Esmé’s epilepsy. One of these doctors was introduced to us as a “rock star.” She is that kind of doctor who is part doctor part scientist, the kind of doctor who has a ten-month waiting list, the kind of doctor who … Read More


October 11, 2012Advocacy, Special Needs Child 1 Comment

I’m sure lots of you have seen a recent meme circulating on facebook and the like of a quote by a Benedictine nun named Sister Joan Chittister. She says: “But I do not believe that just because you’re opposed to abortion that that makes you pro-life. In fact, I think in many cases, your morality is … Read More

The baby across the hall

September 27, 2012Special Needs Child 3 Comments

When Esmé was in that first Pediatric ICU stay, another child was brought in to the room across the hall. When she arrived I watched her rolled in to the room, looking so much like Ezzy did a few days before. She was tiny, not more than four or five months old. And like Ezzy … Read More


September 26, 2012Uncategorized 1 Comment

Well, aren’t I a goddamned idiot? I knew it. I posted about the relief in seizure activity. And guess what happened this morning? Bingo. And then again in the car midday. And then six more times just to make it clear what happens when I open my big fat mouth… It seemed so strange, like … Read More


September 25, 2012Advocacy, Special Needs Child No Comments

I am on the phone with insurance, again. Ezzy has needed a series of genetic tests done to help up in understanding the nature of her disorder (or disorders, yes it may be multiple things). These tests are not cheap. There is one that sequenced three genes for collagen disorder and another that will sequence … Read More

I Believe in Pink *Written in August 2011*

September 25, 2012Special Needs Child 1 Comment

Like Audrey Hepburn, I believe in pink. Rather, I should say I now believe in pink. I haven’t always, but my daughter Esmé taught me to love the color pink.  As an expectant mother I prepared my daughter’s nursery without a hint of pink. My dismay at the flood of blush baby shower gifts, pink for the … Read More


September 24, 2012 No Comments

A few weeks ago I watched my father and my step-father walk a 5 mile Stroll for Epilepsy on their combined four bad knees. Two men I love dearly, two men who have modeled for me what it means to be a man, a father, a family member, a citizen, two men who had barely … Read More