Ezzy and Prince

August 2, 2014Uncategorized

About six months ago Esmé’s medicaid case manager asked if we had ever considered trying horseback riding therapy, known as hippotherapy, for Esmé. At the time I wondered if she and I were thinking about the same kid…Esmé was unable to reliably sustain a seated position on the floor. How would it be possible for … Read More

Temper Tantrum

July 30, 2014Uncategorized

Well, this is new parenting ground for me. While I have thrown many a temper tantrum myself since becoming a mom (as those of you who have read this blog for a while well know), it is only recently that we have entered the realm of Esmé throwing them.Huzzah! Another developmental milestone reached! I had … Read More


July 25, 2014Uncategorized

One of the things I have found so difficult to deal with in our lives as they exist these days is uncertainty. Much as my current state of disorganization and scatter-brainedness might suggest otherwise, I am, at my core, ridiculously compulsive…and I have always believed in the “if you want something done right, do it … Read More


July 23, 2014Uncategorized 2 Comments

I have been trying to write this post in one form or another since February when Claire died…but every time I sit down to write it I am overcome with emotion and have to stop. I never actually met Claire. I never got to see her face in person. But I felt I knew her–and … Read More

The threat.

July 22, 2014Uncategorized 1 Comment

Although she is technically doing well developmentally, Ez has been off for the last few weeks. She has been sleeping a lot, which was at first a welcome change from her up all night partying routine, but it is starting to be troubling. Also she has been having some seizure activity break-through her meds…probably since … Read More

One year

July 21, 2014Uncategorized

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

On possibilities

July 18, 2014Uncategorized

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


July 15, 2014Uncategorized 1 Comment

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


July 10, 2014Uncategorized 2 Comments

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


July 3, 2014Uncategorized 1 Comment

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