June 18, 2015Special Needs Child 4 Comments

In my group of girlfriends from architecture school we have a bit of a tradition: Each time that one of the women in the group has been pregnant with her first baby, the other women have helped to make her a quilt. The quilt I received for Esmé four and a half years ago is … Read More

Palliative Care

June 3, 2015Advocacy, Special Needs Child 7 Comments

Last week I had an appointment that I was both really looking forward to and dreading, simultaneously. The appointment was with Pediatric Advanced Care Team at Boston Children’s. They are the group who does palliative care there. Now, I know that most people hear “palliative care” and think very specific things about end of life … Read More

Angry Clap

May 25, 2015Special Needs Child 4 Comments

Every once in a while I worry that I am going to run out of things to write about. I was having just such a moment this week…and then I remembered Ezzy’s Angry Clap and I realized that having a kid who does something like Angry Clapping means that it is very likely impossible that … Read More


May 21, 2015Special Needs Child 7 Comments

As is typical of my darling daughter, she seems to have come out of being sick a few weeks ago with a burst of energy and excitement. She is currently leaping forward into new abilities, rather than plateauing or regressing is most people would expect of a medically-fragile child after an extended illness. Ez’s petite … Read More

Four years old

May 18, 2015Advocacy, Special Needs Child 2 Comments

Last Monday we had one of those days where I got more done in a few hours than I am typically able to get done in a week. It was glorious. It was also ridiculously hot and sticky. So, in order to celebrate how fantastic the whole day was, Ezzy, her caregiver Mayah, and I … Read More

Mother’s Day

May 10, 2015Special Needs Child 2 Comments

It is Mother’s Day. I have such an odd relationship with this day. To me it is so not about getting to be the queen for the day. It isn’t about sleeping in. Or flowers. Or cards. Or presents. Although I am certainly not complaining about sleeping in until 8:30 or that I woke with … Read More

Around and Into The Unknown

May 7, 2015Advocacy, Special Needs Child

My story “Around and Into The Unknown” is now available as an individual e-book as well as in a six-story paperback and e-book compilation, 6 of 1 Travel, released last week by Ponies + Horses Books.  The story is about our journey in trying to find a genetic diagnosis for Esmé. As many of you … Read More

A grumpy day, an anniversary, and a book

April 30, 2015Special Needs Child

This year the day almost passed by without me knowing what it was. I’m not sure if it happened because yesterday was a kind of gnawingly crumby day–in which Esmé moved over from “maybe getting sick” to “sick” while I am still not over my own awesome bronchitis, in which we have the third caregiving … Read More


April 15, 2015Special Needs Child 5 Comments

Last summer I wrote about being asked if I felt loved by Esmé. At the time I quickly responded that, yes, of course, I felt loved by Esmé. And I do. I really do. I know, beyond a shadow of a doubt, that Esmé loves me deeply. I know it with the same certainty that … Read More

I Don’t Know How You Do It

April 8, 2015Advocacy, Special Needs Child 5 Comments

My friend Channing and I have been editing a few essays together—talking regularly about life with Ez and how I write about it. There is this funny concept we keep coming back around to over and over again: I don’t know how you do it. It comes up in our conversations a lot because I … Read More