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This week is Feeding Tube Awareness Week. It is one of my favorite weeks of the year because I have a chance to talk about the little device that has changed our world: Ezzy’s feeding tube. Esmé has never had an uncomplicated relationship with food. She had a temporary feeding tube during her first week … Read More

I want to take a moment to reflect on the idea that, like many parents of children who are medically fragile, I often refer to my daughter as a hero. I recently read an article that a friend shared on facebook. It was titled “My Child With a Disability is Not My Hero.” The author … Read More

So, you know what, I feel a little bit of a rant coming on…I have truly been trying to nurture the positive these days–which my writing may suffer from in some respects…I mean, who doesn’t enjoy it when I loose it a little bit about doctors or insurance or whatever weird thing happened last time … Read More

I have been thinking a lot lately about our family’s choice to put our story, Ezzy, our diagnosis, (some) of our feelings, “out there” in the world. It has been on my mind especially on the heels of some recent and upcoming media coverage of Esmé and The Cute Syndrome Foundation. Check us out on … Read More

The International Day of Acceptance is this Monday, January 20th. Instead of a post on this subject here at The Cute Syndrome blog, I submitted an essay to 3E Love’s Essay Contest to help celebrate the day. You can read and vote for our essay if you follow this link: https://www.facebook.com/3elove?sk=app_230817203715611&app_data=entry_id%3D482361 Check out the essay contest … Read More

In honor of Esmé’s birthday today, in honor of this little girl who has brought such light and joy into my life, I want to tell all of you about what happened yesterday. You see, I have written about three versions of her birthday post…some of them trying to explain the way I feel on … Read More

Honestly, I am not really into the whole New Year’s Resolution business. I used to make goals for the New Year, but I find myself increasingly surprised by the direction life takes me…so, making goals for the year to come just seems crazy! But what doesn’t seem crazy to me is to regularly remind myself … Read More

You might not know, before this blog, before this open and very public proclamation of life with Esmé, there was another blog. A seed, perhaps, of this thing, The Cute Syndrome…but it was entirely focused inward into the space between Esmé and me. I began writing letters to Esmé when I was pregnant with her … Read More

So I can be a little bit of a grinch at Christmas. But when I was pregnant with Ez I decided I really wanted to make Christmas special for her. As a young child I had such magical Christmas celebrations. As I explained in my previous post, my mother doesn’t do things halfway. So while … Read More

I still rock Ezzy to sleep every night. We have a fairly elaborate ceremony at this point that has evolved as a way to avoid her getting upset and holding her breath, retching, and/or not falling asleep for hours beyond her bedtime. Most nights it takes 45 minutes to an hour. Sometimes, when she is … Read More