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
I have been thinking about writing this post since I got back on Tuesday from the Cute Syndrome gathering for SCN8A families, researchers, and clinicians in Philadelphia. I kept starting the first lines of the post and then feeling as if I was falling short–and so I got stuck in typing and deleting, typing and deleting. However, … 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
So often I find myself feeling as if I am reaching out for Esmé, trying so desperately to grasp ahold of her, trying to understand something more, I don’t know, solid? about who she is. I find it difficult to explain how it could be that I know so little about my daughter… In a … Read More
Ez has had another one of her mysterious Esmé sicknesses for the last few weeks. I find it a bit difficult to know exactly when to even publicly mention these illnesses since they seem to linger on and on just at the edge of turning into something that I can fairly say is proper sickness, … Read More
On Tuesday Ez was due to have her first day in the Kindergarten classroom at her school. This year she’s been attending recess once a week outside with the preschool and Kindergarten group. It has been going so well, both for her and for the other children, that we (meaning the school, Ezzy’s special Ed … Read More