Three and a half weeks

November 1, 2012Special Needs Child No Comments

Well, it has been over three and a half weeks with only one seizure. As I write this I realize that it sounds slightly insane to celebrate “only” one seizure in three weeks. One seizure in a lifetime is not great, am I right? However, in the two months that preceded this three week period, … Read More

Ann Coulter and the R-Word: Part B

October 26, 2012Advocacy, Special Needs Child No Comments

You know I hate to spend two days talking about this horrible woman Ann Coulter, but after listening to her defend her use of the word “retard” on Fox News Radio, I can’t help myself. In her appearance on Alan Colmes’ Thursday Radio Show she claims that she does not regret the use of the … Read More

Jake and Ethan

October 22, 2012Advocacy 2 Comments

This weekend we went to a fundraiser for a local charity, Jake’s Help from Heaven. The charity was started by a family–Heather, Brian and their son Ethan–who lost their son and brother, Jake, to an undiagnosed disorder that onset when he was 8 months old. The charity helps families of medically complex and fragile children … Read More

Poop.

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

Pro-child

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

Change

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