Yesterday we took a road trip to Brooklyn for Ezzy’s little cousin’s first birthday party. It was really important to me that we make the trip to celebrate Lucy for a number of reasons. As I wrote last year soon after Lucy was born, I am certain that these two girls will share a strong … Read More

I few days ago I came across a photo that was being shared pretty widely among the special needs parenting community on Facebook. It was a picture of a young couple and their new baby. The caption to the picture explained that the young mother has Down Syndrome and the father a “slight mental delay.” … Read More

Two nights ago I was digging through old videos of Esmé and I found this video that really startled me. The video was from the day we moved into our current house, almost exactly two years ago. Esmé was 18 months old. She was having weekly seizures at the time, but they were mild. She … Read More

Recently I was trying to explain to my hubby why it sometimes gets under my skin when people tell me (regarding Esmé) things like, “I don’t know how you do it…you are just stronger than most people.” He said that I should take it at face-value and just accept the compliment that it is no … Read More

For so much of her first year and a half Esmé was in my arms. I never put her down because, frankly, it was too risky and, since she was unable to sit up or crawl, she couldn’t do much on the floor anyway. We’d sit for hours curled up, staring at each other. I … Read More

I ran away today for a little bit yesterday. 45 minutes before I was due to relieve Esmé’s day nurse, heading home after an exciting outing at the grocery store and gas station, I found myself cruising past the turn-off to home. I didn’t exactly decide to keep going, but my windows were down, Radio … Read More

It’s funny…lately I have been feeling a little bit like I am invisible. It’s not that I feel un-noticed, per se, but I have been feeling acutely aware of the extent to which my personhood is attached to someone else–and that I am, in some ways, so deeply entwined with Esmé that I wonder if … Read More

So one of the things about having a child who is developmentally delayed and medically fragile is that you have to think strategically about the most basic things in their lives. I’m used to thinking about adaptive standing and walking and rolling devices, but there was one that sort of snuck up on me: Esmé’s … Read More

We had an unusual week last week. We spent the better part of it with photographer Brent Stirton who was with us doing a shoot for the Novartis annual report. I am not certain what exactly I expected out of this experience…but since we are rather used to having therapists, nurses, and case-managers in and … Read More