Get in Line

June 30, 2016Advocacy, Special Needs Child 8 Comments

Lately my notions of what is possible for Esmé are changing. I don’t mean the distant ones that I do my best to keep an open mind about: Will Esmé speak? Will Esmé walk? Will she fall in love? Will she find a way to share her talents with the world through some kind of … Read More

Grin Like You Mean It

June 2, 2016Special Needs Child No Comments

I want to talk about something really important. It is something that is as essential to my survival as oxygen. It is this smile:   This smile is basically the best thing in the world, if you ask me.  It is a wide open tongue-filled smile that says “Oh my god, I cannot even believe … Read More

Dance like nobody’s watching

May 11, 2016Special Needs Child 17 Comments

Esmé is a born dancer. All her life she’s been excited by the music she loves–which is a whole lot of music–and calmed by the music she really, really loves–like the Muppets and the Small Potatoes. Music has always moved her…even when she could barely move. Here she is a four months old, unable to … Read More

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

Five Years.

April 28, 2016Special Needs Child 2 Comments

Tomorrow marks the five-year anniversary of Esmé’s cardiorespiratory arrest. Today we spent a beautiful day together. We snuggled this morning. We went for a beautiful walk in the spring sun. We sat in the grass by the river. I listened to the sound of her snorting giggle as she played. Later she fell asleep over … Read More

That Day

April 21, 2016Special Needs Child No Comments

The anniversary is looming. In just over a week it will be the five years since Esmé’s cardiorespiratory arrest. Another year has gone by and still, still there is part of me that feels as if it was only yesterday. I find it incredibly difficult to explain the extent to which I struggle in the days … Read More