Insurance

September 25, 2012Advocacy, Special Needs Child No Comments

I am on the phone with insurance, again. Ezzy has needed a series of genetic tests done to help up in understanding the nature of her disorder (or disorders, yes it may be multiple things). These tests are not cheap. There is one that sequenced three genes for collagen disorder and another that will sequence … Read More

I Believe in Pink *Written in August 2011*

September 25, 2012Special Needs Child 1 Comment

Like Audrey Hepburn, I believe in pink. Rather, I should say I now believe in pink. I haven’t always, but my daughter Esmé taught me to love the color pink.  As an expectant mother I prepared my daughter’s nursery without a hint of pink. My dismay at the flood of blush baby shower gifts, pink for the … Read More

Gratitude

September 24, 2012 No Comments

A few weeks ago I watched my father and my step-father walk a 5 mile Stroll for Epilepsy on their combined four bad knees. Two men I love dearly, two men who have modeled for me what it means to be a man, a father, a family member, a citizen, two men who had barely … Read More

Let’s Not Seize Today.

September 24, 2012 1 Comment

I have been debating whether or not to even write about this yet…I’m worried it may be bad luck. But I will proceed, whilst knocking on wood. We have gone five days without a seizure for the first time since the first week of August. In the last two months Ez has averaged more than … Read More

Flexibility

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 No Comments

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

Leukodystrophy

September 17, 2012Special Needs Child No Comments

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 No Comments

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

OK

September 13, 2012Special Needs Child No Comments

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