How do you want kids to feel after they’ve read the book?
I want them to feel inspired that they can do the same stuff I have done — anything they put their mind to. I want them to be positive about themselves and their seizures.
What would you have wanted to know/read when you first started having seizures?.
I would have wanted to know that I would be OK. The same life as I had before — not living in the hospital all the time. And I would want to read about someone else who has faced the same challenges as me.
What would you want to know that might be helpful in your life right now?
I would want to know how I could get off meds and not have seizures anymore.
How do you think kids feel when they first have seizures?
How do you think kids feel when they’ve had seizures for a really long time?
They get more used to it but they still don’t like it. Some kids feel discouraged, some might want to scream and pull their hair out.
What do you suggest?
If they want to scream let ’em . If they want to cry let ’em cry. Let them do what they want to do let their feelings out.
What are some things other kids with epilepsy might be scared of?
Some might be scared of having a really big seizure, or of brain surgery, but I’m not scared of that anymore.
What positive things came from you having seizures?
I got to meet a great friend named Grace — she’s one of my best friends now. She doesn’t have seizures but her brother does.
I met nice people in the hospital — my friend Pat who is a really interesting woman and another lady named Maria — I call her “Crazy Maria” Plus all my doctors and nurses are super supportive and that makes me feel good.
I had fun living in a new city for a year and was able to walk to school instead of taking a bus.
I got to go to a camp with other kids who have seizures and I got to eat spaghetti with my face — something my mother would never let me do!
I learned how to raise money for epilepsy — last year I raised over $1,500 for one walk.
What negative things came from you having seizures?
My arm shakes a lot. I can’t go to school until I have better seizure control. I can’t play as much with my friends when I am seizing a lot. I miss them. I can’t ride a bike for a while.
What do you remember about first having seizures?
Because of where my seizures came from in my brain I did really bad things sometimes. I didn’t know why I was doing them but I did a lot of weird stuff. Like one time I put shampoo in our hot-tub and I have no idea why. My mom and dad were happy when I stopped doing all that stuff — my sister was too.
How happy were you on a scale of 1-5 (being the best) with your life before you had seizures?
5 — I love life!
How did that change after you started seizing?
At first I would say a 1 or 2. I even wrote “I hate my life” on a book and it made my mom cry.
Now that’s different. I’m back to a 5 — and I’m still having seizures but now I can try and deal with it better.
Are you embarrassed when you have seizures at school or with a friend?
No because it’s just a natural thing my body does and my class learned about it from my mom who came in and explained about epilepsy and seizures.
If you had a million people in a big arena what would you tell them about Epilepsy?
Go raise money for it. Like 3 million people in the United States have epilepsy. Let’s find a cure!
If you could give advice to parents what would you say?
Your kids are going to be fine sometime. You can help by really believing that there will be a cure some day.
How do you stay so positive?
I have a loving family that takes care of me and I can always count on them. I guess I was just born happy.