Hope

August 20, 2014Uncategorized

The other day as we drove back from New Brunswick I found myself meditating on the idea of hope. I kept thinking about how hope can be understood as a naïve expectation that thing will just be fine, even in denial of the facts. I think this is a misunderstanding of what hope is. In … Read More

Rose Marie

August 20, 2014Uncategorized

There was one really important thing we wanted to do while we were in New Brunswick: find the headstone of the little girl who would have been my husband’s aunt. Her name was Rose Marie, and she died on January 12, 1943 a few weeks after her second birthday. Perhaps a year ago, while doing … Read More

Goodnight Gorilla

August 12, 2014Uncategorized

It has always seemed funny to me that there is a sense that vactioning with children is not really a vaction. I remember, perhaps a year ago, seething over a particular article by a dad bemoaning his inability on vacation with children to sleep late or drink much or relax on the beach or have … Read More

Nouveau Brunswick 2014

August 11, 2014Uncategorized 1 Comment

Exactly four years ago my hubbie and I made a trip to visit his family in New Brunswick Canada. It was perhaps the eighth or ninth time I had been, but that visit was different, I was almost 20 weeks pregnant with Esmé. This week was our first trip back since then–the first time that … Read More

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

“You feed her what?”

July 27, 2014Special Needs Child 5 Comments

The hospital dietician looks at me surprised, a vague air of concern crossing her face. She’s been called in because the nurse didn’t understand my answer to his question about what Esmé eats. “Esmé gets a blenderized diet through her g-tube.” I say, slowly. This isn’t my first rodeo, and I know what’s coming. “You … Read More

Uncertainty

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

Claire

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