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

Insurance

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

Gratitude

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

Let’s Not Seize Today.

September 24, 2012 1 Comment

I have been debating whether or not to even write about this yet…I’m worried it may be bad luck. But I will proceed, whilst knocking on wood. We have gone five days without a seizure for the first time since the first week of August. In the last two months Ez has averaged more than … Read More

Flexibility

September 23, 2012Advocacy 2 Comments

Several medical professionals have told me that Esmé is the “lowest tone child they have ever encountered.” You know, these days it takes a lot to stand out, but my girl is invested. Now, an astounding number of genetic conditions come with low tone (hypotonia) on the list of symptoms. But to be the lowest tone … Read More

My Real Child

September 19, 2012Special Needs Child No Comments

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