I wanted to let all of my readers know that there is some exciting news about Esmé up on the New York Times parenting blog, Motherlode! You should all check it out!
Traveling
On Tuesday Ez and I had a bit of a rough day. I was not feeling myself and neither was she. Ez is on a two-week summer break from therapies and our nurse was out, so our day was spent at a much slower than usual pace. Since we’ve started Esmé’s new nighttime sleep routine … Read More
Quilt
In my group of girlfriends from architecture school we have a bit of a tradition: Each time that one of the women in the group has been pregnant with her first baby, the other women have helped to make her a quilt. The quilt I received for Esmé four and a half years ago is … Read More
My brother Baba
It was the Tuesday or Wednesday after Memorial Day weekend in 2007 that I got a call from my mom and my step-father Phil. “So, something happened this weekend. We’ve, well, adopted a brother for you.” I understood their silly tone very well, and quickly tried to assess the catch…running through a few scenarios in … Read More
Palliative Care
Last week I had an appointment that I was both really looking forward to and dreading, simultaneously. The appointment was with Pediatric Advanced Care Team at Boston Children’s. They are the group who does palliative care there. Now, I know that most people hear “palliative care” and think very specific things about end of life … Read More
Angry Clap
Every once in a while I worry that I am going to run out of things to write about. I was having just such a moment this week…and then I remembered Ezzy’s Angry Clap and I realized that having a kid who does something like Angry Clapping means that it is very likely impossible that … Read More
Understand?
As is typical of my darling daughter, she seems to have come out of being sick a few weeks ago with a burst of energy and excitement. She is currently leaping forward into new abilities, rather than plateauing or regressing is most people would expect of a medically-fragile child after an extended illness. Ez’s petite … Read More
Four years old
Last Monday we had one of those days where I got more done in a few hours than I am typically able to get done in a week. It was glorious. It was also ridiculously hot and sticky. So, in order to celebrate how fantastic the whole day was, Ezzy, her caregiver Mayah, and I … Read More
Mother’s Day
It is Mother’s Day. I have such an odd relationship with this day. To me it is so not about getting to be the queen for the day. It isn’t about sleeping in. Or flowers. Or cards. Or presents. Although I am certainly not complaining about sleeping in until 8:30 or that I woke with … Read More
Around and Into The Unknown
My story “Around and Into The Unknown” is now available as an individual e-book as well as in a six-story paperback and e-book compilation, 6 of 1 Travel, released last week by Ponies + Horses Books. The story is about our journey in trying to find a genetic diagnosis for Esmé. As many of you … Read More