Connor on his first day of preschool this year. Just a few weeks before his first seizure.
“He has epilepsy.”
I’ll be honest—since the doctor said those words to me about my three-year-old son, I’ve felt a bit unsteady on my feet. Like when you’ve been on a boat for a long time and step onto the land, but you can’t quite get the feel for the rhythm of walking.
Connor had his first seizure in September. What was going to be a lazy Monday morning, because it was McKenna’s first day off of school since the semester started, turned to sheer terror when Connor’s little body clenched in such an unnatural way. The morning is still crystal clear in my mind—the desperate sound of my voice pleading, “Oh, Jesus,” when I couldn’t tell if Connor was still alive, my first 9-1-1 call, the way McKenna turned to face the wall when she didn’t want all the firemen to see her crying.
But by that afternoon he was himself. And all the tests came back normal. And I heard story after story about how “these things happen” with toddlers. That fluke seizures are common.
That explanation satisfied me just fine, and I was happy to chalk things up to that.
And then two months later, while in Estes Park, Colorado celebrating Thanksgiving, my father went to retrieve something from the room where Connor was sleeping. He came back downstairs and told my husband and I that Connor was breathing funny.
Seizure number two.
And only several weeks later, we had seizure number three. A big 45-minute one that earned us a room at the local Children’s Hospital for a few days. While there, we had seizures four and five. And that’s when the pediatric neurologist pulled a chair alongside the bed, looked Ben and me in the eyes and said, “He has epilepsy.”
Even with all this, he’s still our silly, passionate, and energetic Connor!
Connor, who when he was in utero was described to me as a “very healthy boy.” How could he have something so serious? How was it even possible that we had need for a whole team of pediatric neurologists? For multiple EEGs, CT scans, and an MRI? For an ever-increasing dosage of anti-seizure medicine?
We’ve known several families with kids who dealt with serious medical conditions. Much more serious and scary than ours. Conditions that required open-heart surgeries when their son was just hours old. Or another family we knew had a toddler whose body couldn’t process food, who had to have a feeding tube. That always seemed like a different level of parenting to me. Those parents were, like, real parents. It wasn’t all Pinterest crafts and carpool lanes for them.
Despite the strands of gray in my hair and how I turned thirty last year, I’ve often had trouble thinking of myself as a real adult. Real adults, it’s seemed to me, didn’t stumble over their words when they led meetings. They knew what to do when the kids were arguing over who a particular stuffed animal belonged to. They voted in local elections and got their daily news from someone besides Jon Stewart or Stephen Colbert.
And real adults would know what to say, what to ask, when the doctor says, “He has epilepsy.”
I’ve been married for almost ten years, have two kids, a dog, six published books, two cars, a mortgage payment, and I’ve gone wine tasting in Napa, California. And yet nothing has made me feel quite so adult as being told my son has epilepsy and watching him battle it multiple times every day.
We’re about to go through another hospital stay and another round of tests to try and pinpoint Connor’s particular brand of epilepsy. This means I’ll likely be slow to respond to emails and comments. It also means that my fiction writing is on hold at the moment. This blog will be the place to find out first when I have a new book coming out and to stay in touch with me in the meantime. You can check back periodically or you can subscribe to the blog feed on the website sidebar where it says, “Receive emails when I update my blog.”
Thank you for your patience with this unique season of life I’m in!