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
Special Needs Child
I’m Eating Here
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?
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
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
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
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
Insurance
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*
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
My Real Child
Opening the lid of the washing machine and peering in, I gasp, “OH no!” The beautiful orange, white, and grey organic bedspread decorated with pebbles and fish–the one I spent months lusting over during my pregnancy–lays in the bottom of the washer…pink, not just kind of pink, but bright, cotton candy pink, dyed by the … Read More
Leukodystrophy
At 10 o’clock in the morning on a Friday one year ago, our phone rings. It is our (then) pediatrician with Esmé’s brain MRI. She’d had the brain scan to look for damage after her cardiac and respiratory arrest several months before–when she was three months old. “The good news,” he says “is that there … Read More