My obsession with mixing unusual cocktails started last summer when we were over-run with basil, so I was using it in everything I could think of–and eventually it made its way into a delightful little purple gin and tonic that I started mixing with Hendrick’s Gin, St Germain, Thai basil, and, well, you … 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
This post originally appeared on The Cute Syndrome Blog I’ve been taking boxing classes lately. It is something that I have wanted to try for a long time, but never really got around to because I managed to convince myself that it was out of character. But the truth is it isn’t out … Read More
I’ve been taking boxing classes lately. It is something that I have wanted to try for a long time, but never really got around to because I managed to convince myself that it was out of character. But the truth is it isn’t out of character…it just is (or was) outside of my comfort zone. … Read More
I’m very excited to say that the post I wrote for Rare Disease Day on the Boston Children’s Hospital Pediatric Health Blog has been picked up by the Huffington Post Blog! I’ll share some of it here, but visit the links above to read the full piece. Every time I have a piece published in a … Read More
Yesterday I was the woman who walked into Target looking tired and rushed, placed her child in the shopping cart seat, and–seemingly for no reason at all–began crying. Thankfully, I was also the woman who didn’t put on makeup that morning–so I was not the woman who walked around the store with streaks of mascara … Read More
I imagine many of you can guess that I spend a lot of time dealing intensely with the limits of reality–medical realities, scientific realities, personal realities. And I do. But also? I also deal in magic. Every single day since Esmé was born I have lived in a world filled with all kinds of magic … Read More
It is Feeding Tube Awareness Week…so it is time to focus a bit on feeding tubes. First some brief background on Esmé’s tube: Esmé’s abdominal feeding tube (g-tube) was placed when she was 3 1/2 months old. Because Esmé had significant low tone and poor suck and swallow coordination, the milk Esmé drank by mouth … Read More
Recently the loss of a childhood friend, Becky, has found me digging through piles of old photos. I have been looking for photos of us together with her sister and our group of friends–photos from those idyllic early days when we were little country kids pretending to be fairies, giggling about the New Kids on … Read More
I feel like the people toss around the idea of bravery a lot when they are talking about children with medical challenges. And as I am laying here in a hospital crib, at four am, pinned under a sleeping Ezzy, unable to sleep myself….this is what I find myself thinking about: What does it mean … Read More