Dear Vice President Biden, I met you last week after a rally in Kingston, NY. You were there in support of Antonio Delgado, who is running for congress in the NY 19th. I sat in the front row of the rally when you spoke. My tiny almost eight-year old daughter, Esmé, sat on my lap, … Read More
When we finally get parked outside the tiny old theatre before Choo Choo Soul I start feeling anxious. I had called ahead to see what the accessibility might look like. No one answered. I left a message. No one called back. So I am rolling Esmé into a situation without a plan beyond: “Hopefully Esmé … Read More
Lately my notions of what is possible for Esmé are changing. I don’t mean the distant ones that I do my best to keep an open mind about: Will Esmé speak? Will Esmé walk? Will she fall in love? Will she find a way to share her talents with the world through some kind of … Read More
I want to talk about kindergarten. Esmé is 5 1/2. This means that in September my little girl will be at the age where she should be starting kindergarten. I imagine that for most parents this is a terrifying and exciting thing. It can be hard to accept that our little kids have grown up … Read More
It is a beautiful Thursday afternoon. We pull into a tiny little road off of Route 44 in Ashford Connecticut. We drive over a one lane bridge, a large still pond stretching out to our left. Then we move slowly upward and into the woods, passing between two large piles of boulders. At that place … Read More
I want to talk about something really important. It is something that is as essential to my survival as oxygen. It is this smile: This smile is basically the best thing in the world, if you ask me. It is a wide open tongue-filled smile that says “Oh my god, I cannot even believe … Read More
When I arrive at my boxing class this week, there are a couple of little boys Esmé’s age running around. Their dad is teaching a session in the back room. And every once in a while they come racing through the front room class, darting between heavy bags. I do my best to avoid them—as … Read More
Esmé is a born dancer. All her life she’s been excited by the music she loves–which is a whole lot of music–and calmed by the music she really, really loves–like the Muppets and the Small Potatoes. Music has always moved her…even when she could barely move. Here she is a four months old, unable to … Read More
Yesterday a post I wrote appeared on the Boston Children’s Hospital Blog Thriving. The post was about Mother’s Day. As I worked on the post I dug through old photos from Esmé’s hospital stay around my first Mother’s Day, and I had a somewhat startling visceral response to what I found. Have you ever looked … Read More
Tomorrow marks the five-year anniversary of Esmé’s cardiorespiratory arrest. Today we spent a beautiful day together. We snuggled this morning. We went for a beautiful walk in the spring sun. We sat in the grass by the river. I listened to the sound of her snorting giggle as she played. Later she fell asleep over … Read More