Sam's Saga Now

    Sam started to decline while off medication. His neurologist was no longer working well with us, saying that the epileptologist could do no wrong. Seizures continued to get worse; he lost skills, lost desire to read because it became so much more difficult for him to keep attention. He lost his ability to sing. He had once been able to keep on key when whistling perfectly and could pick up my guitar and learn chords easily. He became passionate to learn drums and guitar at age 14 yet was not able to keep rhythm at all. He thought he was quite talented and joined friends in a "band". The friends humored him, but knew he was pretty bad. On days when he had seizures he was even worse. He took a very long time now to try and put his fingers to the right positions on the guitar strings and could not carry a tune in singing ( not even in a bucket with help I tried to joke like I used to with my dad who was tone deaf.)...but inwardly I ached for my son who used to be nearly perfect in pitch....)

Kids at our previous church had teased Sam, hitting him in the head during game time. Taunting him to "spaz out". These were kids who had known Sam since birth.  From the diagnosis until we left this church around August of the time he was 13.5 we decided to move on to a new church after the youth pastor moved on to a new job. We had tried to educate the teens, the parents and both pastors had tried to help. I was the Special Ed Co-coordinator. Sam had talked about this bullying to the Senator's Aide at Kids Speak in DC one year. In front of the CT Epilepsy Foundation affiliate. She asked me when I was doing a HOPE Presentation there! I did do several after that, and it helped with one family who did change how they treated him, the others just do not understand. When we moved to our present church, where Sam is a worship leader and plays now in youth band, people understand seizures and epilepsy! From the start he felt accepted! We met a family right away whose daughter has seizures. I met a woman who went through brain surgery and no longer has seizures! (I go to her neurologist now!)

More about Highpointe church later....