Around and Into The Unknown

May 7, 2015Advocacy, Special Needs Child

My story “Around and Into The Unknown” is now available as an individual e-book as well as in a six-story paperback and e-book compilation, 6 of 1 Travel, released last week by Ponies + Horses Books.  The story is about our journey in trying to find a genetic diagnosis for Esmé. As many of you … Read More

I Don’t Know How You Do It

April 8, 2015Advocacy, Special Needs Child 5 Comments

My friend Channing and I have been editing a few essays together—talking regularly about life with Ez and how I write about it. There is this funny concept we keep coming back around to over and over again: I don’t know how you do it. It comes up in our conversations a lot because I … Read More

A Response to An Enlarged Heart

April 2, 2015Advocacy, Special Needs Child

Recently, a friend passed along a 2003 article from the New Yorker, “An Enlarged Heart” by Cynthia Zarin, which was recently republished in her 2013 collection An Enlarged Heart. My friend thought that I would very much enjoy the narrative style and relate to the content of this story, which followed the author through her daughter’s … Read More


February 19, 2015Advocacy, Special Needs Child 2 Comments

It’s such a tiny little word, but it has so much impact: No. Not going to happen.  It’s not likely.  I’m not saying no, but [I’m basically saying no].  I’ve heard more variations of this word in the four years since having Esmé than I did in the 28 before that combined. The psychology of … Read More

Being Esmé’s

February 13, 2015Advocacy

I keep finding myself looking at my daughter with the kind of awe I felt in the early days after she was born, and then again in those days as she recovered after we’d almost lost her. And then again when the seizures started coming fast and heavy. And then again after the first time … Read More

Four years of Ezzy: Year 1

January 10, 2015Advocacy, Special Needs Child

Since I am on a photo kick, it seems like the right time to do a post with photos of Ezzy over the years in honor of her fourth birthday. We will start with her first year. The day Esmé was born is kind of a big blur. She arrived around 7 am–weighing 6 pounds … Read More

You’re in my spot

January 7, 2015Advocacy, Special Needs Child

I wish I didn’t have to say this, but here goes: Those parking spots, the ones designated as reserved parking, you know the ones, with the little stick-figure in a wheelchair? They aren’t there for just anyone’s convenient parking while they just “pop in” somewhere. And the spots alongside those spots, the ones with all … Read More

The Cute Syndrome Blog’s best of 2014

December 31, 2014Advocacy, Special Needs Child

In scouring all of the posts this year I am struck by what a big year it has been for Esmé. 2014 has been filled with a lot of firsts, moves toward Esmé’s independence, and a general coming to terms with our world. Here is my list of the most popular blog posts (based on … Read More

An Announcement

May 4, 2013Advocacy, The Cute Syndrome Foundation

As most of you know this is a pretty big week in our family. It is the two-year  anniversary of Esmé’s amazing recovery from severe aspiration pneumonia and cardiac and respiratory arrest. Two years ago we were still waiting around the Intensive Care Unit at our hospital waiting to see whether Esmé would recover. The … Read More