Our Lives with Epilepsy: Part 3 Proving It

December 9, 2012Advocacy No Comments

In August we came up against the toughest part of her seizures to date. That’s when her seizure  clusters just got completely out of control. Before that we had a good thing going really. While the “seizure days” were tough they came about once a week, and they started to feel manageable. We didn’t have … Read More

Our Experience with Epilepsy: Part 2 Medication and Doubt

November 28, 2012Advocacy 2 Comments

So, continuing our story of life with Esmé’s epilepsy, I will pick up when we finally started her on Keppra after a clinical diagnosis of epilepsy over six months after her first apparent seizure. Everyone said that Keppra was one of the anticonvulsants with the lowest rate of side-effects. And, like with all anti-convulsants, we … Read More

Smiles and Anger

November 20, 2012Special Needs Child 1 Comment

I just saw another mother posting on one of my special needs support group that her 19 month old daughter smiled today–for the first time. This is something that we, I won’t say take for granted, but perhaps that we can lose as a point of reference with Esmé. She smiles so much. She always … Read More

Living Sincerely

November 19, 2012Special Needs Child No Comments

I recently read this article in the New York Times Opinion Pages about Living without Irony. And I have to say I have been unable to stop thinking about it.  I have had a rather low tolerance for living ironically for awhile. I think at first it was because I just couldn’t keep up, you … Read More

Rosie/Ezzy the Riveter/Tube-Feeder

November 1, 2012Special Needs Child 1 Comment

Last July there was a facebook image circulating that showed a blue-haired woman dressed as Rosie the Riveter breastfeeding her baby. The image came from this post on a blog called Strawberry Mohawk. The image was intended to be “for all my fellow breastfeeding moms out there struggling with our nursing rights and image.” For … Read More

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