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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

It has been three years. It has been three years since the worst day of my life…since the day I barely remember…the day we almost lost Esmé. That day is still a blur to me. I knew so little about the medical world. Honestly I knew so little about Esmé. She was little and gray … Read More

I spent a chunk of this morning doing the requisite seasonal weeding through Esmé’s clothes. Admittedly this can be a really difficult task for me. Today was no exception. I unpacked all of her summer stuff from last year, most of which still fits because she grows so slowly. I packed away most of the … Read More

Today was a very good day. We have a lot of pretty good days now…a lot of days that I find myself saying “aside from that, it was a great day.” But today, today was just a straight up very good day. It was a good day for a lot of reasons. We had a … Read More

Some of you may know that this year March 5th is the awareness day for the Spread the Word to End the Word campaign. I have written about my feelings about the “R-word” in previous posts–specifically in regard to Ann Coulter’s continued use of the word. I didn’t get to write about the R-word on … Read More

Hello readers. There is nothing I have ever experienced that is quite like the feeling of a community wrapping its arms around you. Since having Esmé this feeling has happened over and over again for us and I am still just floored every time by the sense of love that comes from community. It still … Read More

Today’s Feeding Tube Awareness Week topic is about coping with life with a feeding tube…and it got me thinking about the early days of tube feeding, when we certainly were just barely coping. I can remember in the first few months of having her tube I had feelings of failure, anger, and fear. I wanted … Read More