A thousand words.

May 6, 2016Advocacy, Special Needs Child 9 Comments

Yesterday a post I wrote appeared on the Boston Children’s Hospital Blog Thriving. The post was about Mother’s Day. As I worked on the post I dug through old photos from Esmé’s hospital stay around my first Mother’s Day, and I had a somewhat startling visceral response to what I found. Have you ever looked … Read More

Help, I do it

April 7, 2016Advocacy 6 Comments

I have written a number of times about how difficult I find it that I cannot understand the verbalizations Esmé makes. I do struggle with it, daily. I want so badly to hear her voice, to understand her. And while I feel very deeply that I understand Esmé better than I have ever understood another … Read More

The Power of Tube Feeding

February 12, 2016Advocacy 3 Comments

It is Feeding Tube Awareness Week…so it is time to focus a bit on feeding tubes. First some brief background on Esmé’s tube: Esmé’s abdominal feeding tube (g-tube) was placed when she was 3 1/2 months old. Because Esmé had significant low tone and poor suck and swallow coordination, the milk Esmé drank by mouth … Read More

Looking Backward

February 5, 2016Advocacy 2 Comments

Recently the loss of a childhood friend, Becky, has found me digging through piles of old photos. I have been looking for photos of us together with her sister and our group of friends–photos from those idyllic early days when we were little country kids pretending to be fairies, giggling about the New Kids on … Read More


January 20, 2016Advocacy 8 Comments

I feel like the people toss around the idea of bravery a lot when they are talking about children with medical challenges. And as I am laying here in a hospital crib, at four am, pinned under a sleeping Ezzy, unable to sleep myself….this is what I find myself thinking about: What does it mean … Read More

In Philadelphia

December 14, 2015Advocacy 1 Comment

I have been thinking about writing this post since I got back on Tuesday from the Cute Syndrome gathering for SCN8A families, researchers, and clinicians in Philadelphia. I kept starting the first lines of the post and then feeling as if I was falling short–and so I got stuck in typing and deleting, typing and deleting. However, … Read More

The Farm

October 28, 2015Advocacy, Special Needs Child 4 Comments

As I am sure those of you who follow this blog know, we have had some holes in our nursing care over the last few weeks/months. And it has been hard on all of us. Ezzy misses her former caregivers, and all of our schedules have been turned upside down. I feel as though we … Read More

On The Playground

October 21, 2015Advocacy, Special Needs Child 7 Comments

A lot of parents worry about their children making friends on the playground. It is easy to call up images of our children being left out, to imagine them lonely and confused while the other kids play happily out of their reach.  As the mother of a child who has developmental delay, it would make … Read More

Why we need to talk.

September 11, 2015Advocacy, Special Needs Child 12 Comments

The pretty little girl on the playground looks back at me, “Why isn’t she talking?” She asks glancing back at Esmé–who is scooting around in her gait trainer, trailed by several other curious children. “Esmé doesn’t talk yet, but she understands you.” I say smiling back at her. “Oh,” She says, fully turning away from … Read More