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
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Temper Tantrum
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
Uncertainty
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
Claire
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.
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
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
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
Slipping
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
Stronger.
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
Tether
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