Epilepsy and Corey

My son Corey is 12 years old and has Epilepsy. He started having seizures when he was 3. The doctors kept saying he would out grow them. For 8 years he went undiagnosed. Then in March of 2010 he had a tonic/clonic seizure while rehearsing for a play at school. I got a call from the school saying Corey had a bad seizure. My heart dropped. Corey was transported to the hospital where several tests were run. For 2 months we didn't have a dianosis. Then in May of 2010 the neurologist told us that Corey has Epilepsy. My husband and I were heart broken. To find out that our child has something that can't be "fixed" is one of the worst things a parent can hear. It was hard trying to explain it to his 3 brothers and the rest of the family. Because on the outside Corey looks fine. He doesn't look sick. His seizures are sometimes so small that you don't notice unless you are starring at him. It is frustrating because people question whether he really has Epilepsy or not.

 

On January 2, 2011 Corey had a tonic seizure at the Flint Riverquarium. He fell straight back like a board, eyes rolled back in his head, his lips turned blue, his chest and stomach were caved in like he was holding a breath and he stopped breathing for 3 minutes. My other boys were there. They thought he had died. This has really affected them. My youngest, who is 5, says on almost a daily basis, "Corey don't have a seizure and die today." My two older ones don't understand that Corey can't control some of the things he does. So they end up arguing with him a lot. There has been a lot of tension in our house since Corey was diagnosed. But mainly because we all don't know what is going to happen or when the next big seizure is.

 

One of the hardest things is not knowing what the future holds for Corey. Will he drive? Will he be able to live on his own? Every parent wants their child to be "normal" and finding out that my son will never be "normal" tears at my heart every day. I have 3 other boys that are "normal". Corey has a hard time knowing that he has something wrong with him and his brothers don't. He was in the doctors office when the neurologist told me that if we don't get Corey's seizures under control he could become mentally or physically "mentally retarded" (I don't like that word but that is what the doctor used.) There have been many days that he breaks down and crys. He asks, "Why do I have this?" I don't have the answers to give him. I want so badly to be able to take it away from him. I want him to be able to be a regular 12 year old that goes out and rides a bike by himself or plays alone. He has to be watched at all times to make sure he isn't seizing.

 

Parents who don't have a special needs child do not understand what we go through. Every day I worry. Every night I get up numerous times to check on him. I pray every day that Corey doesn't have a seizure or that Corey wakes up. I pray that he doesn't have SUDEP (Sudden unexplained death in Epilepsy). I pray that he will grow up and live a happy healthy life. I worry every time the phone rings. I worry that it might be his school calling to say Corey had a seizure. I worry when he isn't in my sight. I worry when he is in the bathroom. I worry when he is sleeping. 

 

One good thing that has come of this is that I see each day as a blessing. Before Corey's diagnosis I would let days go by without really telling my kids how much I love and adore them. But now I make sure every time they leave for school, come home from school, go to a friends house or just go outside that I tell them I love them. I don't know what the future will be like for Corey.All I can do as his mom is fight to find answers and ways of making him have a better quality of life.