The anniversary is looming. In just over a week it will be the five years since Esmé’s cardiorespiratory arrest. Another year has gone by and still, still there is part of me that feels as if it was only yesterday. I find it incredibly difficult to explain the extent to which I struggle in the days … Read More
Esmé is making some great gains these days–I wrote about some of them last week–and, you know, it is just unbelievable to watch. I feel as if all the time these days I am wiping tears from my eyes and lifting my jaw off the floor. Today one of these moments happened as I was … Read More
You would think I would know better by now than to be surprised by much of anything. But, here I am, yet again feeling in awe of the gains Esmé has been making lately. As I have been thinking about writing this post I have found that it is hard to put my finger on … Read More
Yesterday it was distractingly beautiful out. It was one of those days that reminds the world that spring is, in fact, coming. It also happened that all of Ezzy’s therapies were canceled for the day, and I didn’t have anyone to watch her for the day. So I decided that we would just take a little … Read More
Thursday will be Esmé’s fifth birthday. I am about to be the mother of a five-year-old. It feels like a real milestone…one that has left me reeling a little bit. It is sad to admit that anticipating Esmé’s birthday is still difficult for me, even after five years…perhaps, more accurately, especially after five years. The … Read More
A few weeks ago we had an appointment with one of Esmé’s doctors. He’s a good doctor. We have had a great working relationship for a number of years. I like that he is a specialist that realizes that while his particular specialty is his priority, it may not be mine with Ez. He knows … Read More
Recently there has been a bit of controversy within the world of disability storytelling—some concerns have been raised about the kind of stories that are told on The Mighty, especially those stories by parents of children with special needs. These stories have been criticized for being insensitive to the children’s privacy, or, at times, humorous … Read More
Like most people do this time of year, I have been spending a lot of time looking back over the past year. A lot happened in 2015. It was a year of amazing growth for Esmé and, as a result, it was also a year of changes for me too. The most notable gain was, … Read More
I don’t know if many of you know this, but my daughter Esmé is a traveler. Apparently, the other night, when I thought Esmé was asleep in her crib down the hall, she was actually in Scotland with my cousin Christy. She was off traveling. Yesterday morning I woke to a message from Christy letting … Read More
One night in the fall of 2011, after my daughter Esmé was tucked into her crib, I climbed into bed, grabbed my laptop, and opened YouTube. I took a deep breath before I started searching terms like infant tremor, infant shaking, and then finally, in what seemed like a betrayal of my daughter and my own carefully … Read More