November is Epilepsy Awareness Month!

The fact that November marks the 6 month mark since Sam left us and Epilepsy Awareness Month arrive at the same time seems rather ironic to me. Sam was 10 years old when he approached me with the words, " Mom, you always told me that God uses the bad things in our lives for something good. PROVE IT!" I could not let him down! I was challenged! I knew that God had always done this in my life, including when my own father had died, but showing this to my son, who had a chronic and serious disorder, this was another thing! I went on-line and started to search. "Epilepsy"......I found the National Epilepsy Foundation and the "Speak Up/Speak Out Kids Speak Up program"; It involved applying and if chosen a child and family member traveled to Washington, DC in March for the Public Policy Institute of the Epilepsy Foundation to meet others with epilepsy then head to Capital Hill. They would have meetings with their representatives and explain their personal stories of the impact of epilepsy. WOW, this sounded pretty neat. I explained this to Sam and asked if he wanted to apply. He did want to try and was chosen as one of 30 children across the United States, the only one from Connecticut. The EF Affiliate called me stating, "Who are you, I have never heard of you before?" I explained that I had not heard of her before either nor had I known there was such a thing as the Epilepsy Foundation in the three years of my son's condition. I had Sam and his sister Anna write pamphlet style booklets in order to prepare for our trip. I had done some research on the EFA website about advocacy because I like to be prepared. The creation of the leave behinds provided great therapeutic release for both of them as we discussed the contents. I have taught many families how to create this type of book in the years since that time. I have also strongly recommended Kids Speak to dozens of Families. Sam went with me several times. Each time provided valuable and different experiences for him. Telling members of Congress our personal experiences provides specific information that the member or health legislative assistant can use to vote appropriately. Epilepsy is a disorder that can be variable. It worsens for some people. There are co-morbid conditions (goes along with) such as depression (in 11-60% of the people with epilepsy according to Dr.Andres Kanner), Learning problems can occur, ADHD, behavioral problems, sleep disorders, social problems, suicide rate is higher, 25,000-50,000 people die annually due to epilepsy or epilepsy related causes each year. 50 % of children can outgrow their epilepsy by puberty. Their is no central clearing house for information to know if any of these cases are among those that have their epilepsy come back later in life. 1 person in 10 WILL have a seizure at some time in their life. 1 person in 100 has epilepsy, between 3-5 million people has epilepsy in the US. (the discrepancy is because of some who are either not diagnosed or are not being currently treated for their epilepsy. ) People with epilepsy CAN do things. Some have been Congressmen who helped write the American with Disability Act, Another is an Olympic Hockey Player, we can be writers, actors, teachers, social workers, business people, IT specialists, artists, doctors, neurologists or anything else. Epilepsy is a spectrum disorder that does impact the entire family. The fact is, epilepsy is not something people need to fear, just be educated about! Epilepsy is not demon possession. It is misfiring neurons that cause a reaction elsewhere in the body. Sam continued to be an advocate more for his depression for the remainder of his life. Most people who have ever met me know I am a passionate advocate. (yes, I talk to anyone!) I HATE epilepsy. It robs people of life. I LOVE people WITH epilepsy! They all amaze me. DO I regret having epilepsy as part of our life? That is a very hard question. I regret the pain my son endured. (but everyone has something, right?)....I do wish Sam and Anna could have held the closeness they first had. Epilepsy and mental illness changed the friendship they initially had. We have had the privilege of knowing some wonderful and inspiring people we would not have known if epilepsy had not been in our lives. I do believe I am stronger because of what has happened along the way.