I keep finding myself looking at my daughter with the kind of awe I felt in the early days after she was born, and then again in those days as she recovered after we’d almost lost her. And then again when the seizures started coming fast and heavy. And then again after the first time … Read More
Feeding Tube Awareness Week
This week is Feeding Tube Awareness week. I have spoken here quite a bit about Esmé’s feeding tube. As my post from last year’s Feeding Tube Awareness Week explained, Esmé has never had an uncomplicated relationship with food. At first she did not eat enough to grow–and she threw up much of what she did eat. … Read More
Another Non-Answer Courtesy of Genetic Testing
Today I looked in the mirror and I saw someone I barely recognize. I’m pale. The bags under my eyes are purple. My lips are drawn tight in a thin line. It is really hard for me to explain quite how difficult the last two weeks have been. I have tried to hide it, but … Read More
Winter
Yesterday we caught the edge of the blizzard as it made its way up the east coast. It wasn’t really much in the way of snow, but it was enough to slow most everyone down a bit–schools were closed and we’d canceled a day trip to Boston, so there were no appointments or therapy sessions … Read More
Beyond Acceptance
Today I meant to write a post on January 20th, the International Day of Acceptance–a day devoted to the social acceptance of disability. I mean, I suppose I am still writing something about that in a way…but all of the lofty thoughts I started having about what acceptance means, about the goals beyond acceptance–where people … Read More
Raising Esmé
Today is Esmé’s fourth birthday. Her birthday–and the days that lead up to it–is always filled with a lot of mixed emotions (you can see last year’s post here). This day marks the entrance into the world of the most amazing person I have ever known–the absolute love of my life. It is an overwhelmingly … Read More
Four Years of Ezzy: Year 4
This year has been completely crazy. Looking back over the photos from this year, I don’t even know where to begin. This year was all about huge gains. Esmé started this year having just learned to sit up, with a kidney that almost certainly needed surgery, and not making many attempts to communicate. Now she … Read More
Four Years of Ezzy: Year 3
Year three of Ezzy’s life was a lesson in making peace. All of her first year we thought “if only we could get her GI system working better.” And then during her second year we thought “if only these seizures would stop” …and “if only we had a diagnosis” and “if only her GI system … Read More
Four years of Ezzy: Year 2
The theme of the second year of Esmé’s life was seizures, unfortunately. She was starting to seize every week, almost to the day. We still weren’t certain that these things were, in fact, seizures–but they were. She had tons and tons of hospitalizations. We spent a ton of time in Boston for EEGs and a … Read More
Four years of Ezzy: Year 1
Since I am on a photo kick, it seems like the right time to do a post with photos of Ezzy over the years in honor of her fourth birthday. We will start with her first year. The day Esmé was born is kind of a big blur. She arrived around 7 am–weighing 6 pounds … Read More