It has been three years. It has been three years since the worst day of my life…since the day I barely remember…the day we almost lost Esmé. That day is still a blur to me. I knew so little about the medical world. Honestly I knew so little about Esmé. She was little and gray … Read More

I spent a chunk of this morning doing the requisite seasonal weeding through Esmé’s clothes. Admittedly this can be a really difficult task for me. Today was no exception. I unpacked all of her summer stuff from last year, most of which still fits because she grows so slowly. I packed away most of the … Read More

Today was a very good day. We have a lot of pretty good days now…a lot of days that I find myself saying “aside from that, it was a great day.” But today, today was just a straight up very good day. It was a good day for a lot of reasons. We had a … Read More

Some of you may know that this year March 5th is the awareness day for the Spread the Word to End the Word campaign. I have written about my feelings about the “R-word” in previous posts–specifically in regard to Ann Coulter’s continued use of the word. I didn’t get to write about the R-word on … Read More

Hello readers. There is nothing I have ever experienced that is quite like the feeling of a community wrapping its arms around you. Since having Esmé this feeling has happened over and over again for us and I am still just floored every time by the sense of love that comes from community. It still … Read More

Today’s Feeding Tube Awareness Week topic is about coping with life with a feeding tube…and it got me thinking about the early days of tube feeding, when we certainly were just barely coping. I can remember in the first few months of having her tube I had feelings of failure, anger, and fear. I wanted … Read More

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