Dylan's Journal: Life with epilepsy in the words of an 8-year-old
My big brother Nicholas is the greatest brother anyone could ever have. He is always looking out for me. He gets real nervous sometimes around me. He has seen almost all of my seizures. He always helps my Mom when I have a seizure. He even caught me 2 times in the air. I am lucky because I could have gotten hurt if he didn’t catch me. Mom says he needs to relax around me because he doesn’t have fun if he is always watching me. Mom tells Nicholas that it is her job to always be watching me. She wants Nicholas to just enjoy himself.
Today was a real bad day. I got in one of those sad funks. I get sad and start to cry. I can’t control myself. I start thinking about how I am ruining everyone’s life. Mom thinks it is from one of the medicines that I take. My poor Mom can’t do anything anymore without me. I have become her shadow. She can’t even work because she needs to watch me. She had 3 jobs that she couldn’t take because of me. She tells me that me and my brother are the best things that happened to her and she wouldn’t change anything. If she changed something then we wouldn’t be who we are today. When I feel like this—when I get into one of my sad funks—it sometimes lasts for 2–3 hours. It helps sometimes when I talk to people. Today I spoke with Grandpa Charlie, Grandma and Cindy, my Mom’s friend. That did help a little bit.
I am so happy! My uncle Hector cared enough to send me a MedicAlert bracelet in the mail. When Mom told me I had to wear one I wasn’t so happy about wearing an ugly bracelet every day, but this bracelet is the coolest! It has dolphins, and fish, and an entire underwater scene. Mom loves it because, she says, as I get older she can change the band. As I get older she can make it a solid one if I want. I mean I don’t want to be 50 and wearing a underwater scene MedicAlert bracelet.
Today I scared Mom. I had 2 myoclonic seizures on the floor. Those freak her out. I also had 6 absence seizures. Those are the ones when I just stare. It looks like I am daydreaming but I am not. Mom will calmly call my name till I come out of them. S ometimes she calls my name 2–3 times and other times she will call me 6–7 times before I come out. These can come anytime of the day. Sometimes in the morning when I first wake up and sometimes at night when I am sleepy. Sometimes in the middle of the day when I am bored or doing school work. If I am concentrating hard on something Mom says that sometimes I will get like this a lot. This is why I need to be monitored all the time.
Yes, today was awesome. I only got 2 seizures today. That blew my socks off. Tomorrow I want to have an even better day. Let’s go for 1 seizure or, better yet, 0 seizures.
I am happy that I am only getting between 5–12 seizures daily. I use to get a lot more daily. However, I will be even happier if I could go a week, month or months without seizures. I just want to be a normal little boy that doesn’t need someone watching everything he does all the time.Editor’s note: Dylan’s mother, Lisa Loiodice, his primary caregiver, wrote the In My Own Words column.