September 23, 2012Advocacy 2 Comments

Several medical professionals have told me that Esmé is the “lowest tone child they have ever encountered.” You know, these days it takes a lot to stand out, but my girl is invested. Now, an astounding number of genetic conditions come with low tone (hypotonia) on the list of symptoms. But to be the lowest tone … Read More

My Real Child

September 19, 2012Special Needs Child

Opening the lid of the washing machine and peering in, I gasp, “OH no!” The beautiful orange, white, and grey organic bedspread decorated with pebbles and fish–the one I spent months lusting over during my pregnancy–lays in the bottom of the washer…pink, not just kind of pink, but bright, cotton candy pink, dyed by the … Read More


September 17, 2012Special Needs Child

At 10 o’clock in the morning on a Friday one year ago, our phone rings. It is our (then) pediatrician with Esmé’s brain MRI. She’d had the brain scan to look for damage after her cardiac and respiratory arrest several months before–when she was three months old. “The good news,” he says “is that there … Read More

Mutants and Superheros

September 16, 2012Special Needs Child

My nephew is five. He is stinking adorable and curious and delighted with the world in the way that only a five-year-old can be. He is still parcing out what is real and what is imagined. And since he is enough in awe of the things that are real, the imaginary seems possible. Why can’t … Read More

The art in my everyday

September 15, 2012Special Needs Child 1 Comment

As I steer the car down the hill toward the Farmer’s Market, carefully eyeing Ez for signs of seizure, I am suddenly amazed that I can be so vigilant and shift relatively gracefully through traffic…it is a quiet, fleeting art. I have written about “everyday life” academically for years, but until these last precious, breathless, … Read More


September 13, 2012Special Needs Child

I found myself in the Target again today hearing another person, a person I had never met before reassure me that my daughter was “going to be okay.” It’s the third time this week. Usually their sister or cousin or daughter’s friend had a small baby or a baby who walked late or whatever. And … Read More