It's about 1:30 in the morning as I type this. The baby monitor is sitting next to the keyboard, hissing quietly, and every once in a while I hear my daughter roll over and sigh. That's the night shift. I've been working it for almost three years now. A lot of you reading this have been working it too.

My name is Glenn Harstad. I'm 36, I test software for an insurance company, and we live in Wisconsin. My wife Kristin and I have two kids: Emma, who is 7 and has epilepsy, and Owen, who is 4 and has a lot of opinions about dinosaurs. This page is for other parents who just heard the word "epilepsy" from a doctor and feel like the floor fell out. I remember that feeling. I want you to know that it gets steadier.

The First One

Saturday night, October 19, 1996. Emma was four. Around two in the morning, Kristin heard a strange noise from Emma's room. We found her stiff and shaking, her eyes open but not seeing us. It lasted about two minutes. It was the longest two minutes of my life. We called 911, and by the time the ambulance came she was asleep, breathing slow and heavy, and she didn't remember a thing in the morning. She asked why there were strangers in her room.

After that came the emergency room, then a pediatric neurologist, then an EEG (they glue little wires to her head and record her brain waves, which doesn't hurt, although Emma would like you to know that getting the glue out of her hair did), then an MRI. The EEG showed what the neurologist was looking for. It also explained something her preschool teacher had mentioned and we'd shrugged off: little staring spells, a few seconds long, where Emma would just stop and look at nothing. Those were seizures too. We'd thought she was daydreaming.

Epilepsy, the Dad Version

I'm a software tester, not a doctor. Your child's neurologist is the one to ask. But here's how it was explained to us, more or less.

• Your brain runs on tiny electrical signals. A seizure is when there's a sudden burst of extra electrical activity, like a storm, and for a little while the brain can't work normally.
• Epilepsy just means a person tends to have seizures more than once, not from something like a fever or a head injury.
• There are a lot of different kinds of seizures. Some are the big shaking kind everybody pictures. Some are just a stare. Some are a twitch, or a strange feeling, or wandering around confused.
• It's pretty common. Something like one in a hundred people has epilepsy.
• For most people, medicine controls the seizures. Some kids outgrow epilepsy. Our neurologist says Emma's kind is one that kids sometimes do outgrow. We're hoping.
• It is not contagious, it is not a mental illness, and it has nothing to do with how smart your child is. Emma reads at a fourth grade level. I'm just saying.

I'm not going to name Emma's medicines here. The first one we tried made her cranky and foggy and didn't stop the staring spells. The second one works, and she's been doing great on it. But what works for one kid doesn't always work for another, and that's a conversation for you and your doctor. Don't ever change or stop a seizure medicine on your own. Stopping suddenly can bring on seizures.

What We Tell Babysitters

This is the plan Emma's doctor gave us for her big seizures. It's general seizure first aid, the same kind of thing you'd learn in a first aid class. Ask your own doctor what your child's plan should be. Yours may be different.

School

Before kindergarten, Kristin and I met with Emma's teacher and the school nurse and brought a one-page sheet with the plan above and a description of her staring spells, so her teacher wouldn't think she was just not paying attention. We do it again every fall. Her teachers have been great. If your child needs changes at school because of seizures or medicine side effects, ask the school about a Section 504 plan. It's a federal law that covers kids with health conditions like epilepsy.

What I Wish I'd Known the First Month

1. It's nobody's fault. Not yours, not your spouse's, not the Tylenol you gave her, not the trip to Grandma's. I spent months looking for what I did. Our neurologist finally said, "Glenn, you didn't do this." I needed somebody to say it.
2. Keep a seizure diary. Date, time, how long, what it looked like, what was going on that day. The doctor will ask. You won't remember.
3. Take turns. Kristin and I split the night shift for the first year. Before that I was sleeping on the floor of Emma's room and turning into a zombie at work.
4. Don't forget the other kid. Owen was only a baby then, but now he notices when everybody's worried about Emma. He gets Dad Time on Saturday mornings, just him.
5. Let her be a kid. Emma rides a bike (helmet, always), swims (with a grown-up right there, always), goes to sleepovers (with a phone call to the other mom first). Ask your doctor what's safe for your child. Then let them do it.
6. Find other parents. Our state's epilepsy association has a parent support group that meets once a month. The first time I went, a mom told me her son had been seizure-free for six years and was going to college. I held onto that for a long time.

Where to Get Help

• Your child's doctor, and a pediatric neurologist if you can get a referral. A children's hospital is a good place to start.
• The national epilepsy foundation and its state and local affiliates. They have information for parents, teachers and babysitters, and many run support groups and summer camps for kids with epilepsy.
• A medical ID bracelet. Emma picked a purple one.
• Other parents on the Internet. There are e-mail lists for families of kids with epilepsy, and I've met some wonderful people there. Just remember that other parents aren't doctors either (me included).

Emma's Page
Emma wanted her own page. She told me what to type and she picked the colors. Go see Emma's page!