Strange Luck

We live in a land of strange luck. We are lucky our daughter’s seizures have (thus far) stopped within a handful of minutes, rather than going on for hours. We are lucky our daughter’s atrial septal defect—colloquially known as “a …

My Shortest Post

Tonight, Fiona spiked a fever and had a very brief seizure. She was standing at the coffee table, coloring, and I watched her “lights go off” but her eyes remain open, and she tipped over like an axed tree. Her …

Encounters with Strangers

Fiona is getting sick again. After a week of being sick, followed by a week of getting well, followed by another week of being sick, followed by last week, when she was well, she has started showing all the signs …

Honest Facebook

When I was in graduate school at Ohio State University, learning to sniff out the bullshit in my writing, straining to write as honestly as possible, I read an essay called “The Visible Cripple (Scars and Other Disfiguring Displays Included).” …

She Always Knows More

Wednesday Fiona is sitting in her highchair, eating breakfast. I am in the kitchen. “Mary Had a Little Lamb” is playing on the tablet. Just after the song goes “His fleece…” I hear Fiona’s talker say, “white.” I didn’t know …

My Daughter is Learning to Talk

It’s hard to remember why the scene I’m about to describe was a shock. This kind of scene has become a near daily occurrence in just five weeks time. But on August 6th of 2014, it was a total surprise …

Notes from the Land of Beauty & Difficulty & Joy

My family and I spent last weekend in a Harrisburg Sheraton with 300-hundred-some others, all of whom gathered in the name of a chromosomal anomaly. How could this be fun? you might ask. Even the itinerary sounds heavy: lectures on …

We’re Presuming Competence

In a workshop on special education, inclusion expert Dr. Cheryl Jorgensen simulates a class activity with a group of teachers. She asks them to pretend they’re students in a traditional social studies class, and among them is a hypothetical girl, …

Fractured Bits from Toddler Land

They don’t even toddle, yet they have harnessed the targeted power of tornadoes. You can tell where they’ve been by the destruction they’ve left. Every book from the lowest shelf is scattered across the floor. Scores of blocks litter the …

Raising Daughters in the Age of Elliot Rodgers

The nation is wearing red-white-and-blue today, and after the news from Isla Vista, California, it seems like everyone should be wearing black. At least this is how I felt as I sat on the street curb with my two infant …