Today I found out that March 26 is Epilepsy Awareness Day! I guess it’s time for me to share our story.
Let me start with this:
• Epilepsy is not a mental illness
• Epilepsy is not contagious
• People with epilepsy CAN drive a car, work, play sports and have a family
Having epilepsy doesn't make you different to anyone else. People with epilepsy can live as full and active a life in terms of work, education, activities, social and family life.
Back in 2010, only after being home for 6 month, our oldest son Daniel J. was diagnosed with seizure disorder, epilepsy. After many tests, doctor told us that he has a little scar on his brain, and that was a cause of his seizures. Daniel J. remembers hitting his head back at his first home and looks like that caused some damaged to his brain. We had no information about epilepsy and it was a totally new for all of us.
Our son had total of 3 seizures before he was put on medications. First two seizures happened when he was with Sergey away from home, and they were two weeks apart. One time Sergey and Daniel J was at church, and he was taken to the hospital by ambulance (they let him go home on the same day), and second time was at Costco’s parking lot, but it just stopped and we didn’t have to take him to the hospital. His 3rd seizure, which was also the biggest out of all of his seizures, did happen at home. I was home alone with 3 children; Daniel J. was 8 year old, Daniel D. 2 year old and Elliana 3 month old. Daniel J. started to act “funny”, would look away and was not responding while he was sitting at the table and having his lunch, I knew immediately that he was going into the seizure. I remember taking him and laying him on his bed, on his side. Elliana just woke up, and I was holding her, while trying to hold Daniel J still on the bed, Daniel D was 2 year old, and was scared, would not let my leg go. It was one of the scariest moments of my life! I was able to call Sergey to ask what I should do in this situation (he was at work), and he called 911. The scariest part of his 3rd seizure, it was long, and once he was out of one seizure he would go into another one, and it was almost nonstop. While we were waiting for ambulance, he had about 5-6 seizures.
Our son had total of 3 seizures before he was put on medications. First two seizures happened when he was with Sergey away from home, and they were two weeks apart. One time Sergey and Daniel J was at church, and he was taken to the hospital by ambulance (they let him go home on the same day), and second time was at Costco’s parking lot, but it just stopped and we didn’t have to take him to the hospital. His 3rd seizure, which was also the biggest out of all of his seizures, did happen at home. I was home alone with 3 children; Daniel J. was 8 year old, Daniel D. 2 year old and Elliana 3 month old. Daniel J. started to act “funny”, would look away and was not responding while he was sitting at the table and having his lunch, I knew immediately that he was going into the seizure. I remember taking him and laying him on his bed, on his side. Elliana just woke up, and I was holding her, while trying to hold Daniel J still on the bed, Daniel D was 2 year old, and was scared, would not let my leg go. It was one of the scariest moments of my life! I was able to call Sergey to ask what I should do in this situation (he was at work), and he called 911. The scariest part of his 3rd seizure, it was long, and once he was out of one seizure he would go into another one, and it was almost nonstop. While we were waiting for ambulance, he had about 5-6 seizures.
Once ambulance came in, they gave him a shot to stop seizure, and it did stopped for about 5 minutes, and then he went into another seizure. Sergey left work, and drove directly to the hospital where Daniel J was taken and 1 hour later, Daniel J. was still having seizures. Finally doctors were able to stop it, and Daniel J. spent two days in the hospital. Doctors told us that he should been given medication when he had his 1st seizure. Also, all 3 seizures did happen on days when he didn't sleep in and didn't get enough sleep. First two happened on Sunday, when he had to get up earlier and go to church, and 3rd one happened next day after we were visiting our friends, and kids got to bed late. Now, all our kids have the routine, and I always making sure they do get enough sleep.
Our son was on medications (KEPRA) for 2 years, and he been off his medications for the last 2,5 years.
Our son was on medications (KEPRA) for 2 years, and he been off his medications for the last 2,5 years.
He is our pride and joy! I can’t imagine my life without my oldest son! He does have many academical, emotional and social struggles, but making progress in all areas! I can’t even imagine what would happen to him back in Ukraine. He would probably end up at mental institution. We are blessed to have him here today, and we do believe in the Healing Power of Prayer!
*******Usually people can’t remember what happened to them during seizure or right after it. I will always remember moment, when Daniel J was coming out of one of his many seizures and going into another, I heard his sweet voice: “Mommy, so sorry I puked on my bed, and you will have to wash it. Please forgive me?!” and me whispering “It’s ok my baby, it’s ok my little son, don’t worry about it, it’s not a big deal!”
Please do not be quick to judge, discriminate, criticize or stigmatize others when you are not walking a mile in their shoes.
You can help by being more considerate and understanding towards others especially when you have no knowledge about their condition. We can all play a part in raising awareness of epilepsy.
