To some it may seem like I dropped off the map for awhile. It is always hard for me to write about what is going on when I am in the middle of it happening. I am a processor - analyzing and dissecting experiences before I make sense of them. This long version is a timeline, a written record of Ben's behavior, our reaction and the doctor's response. It will serve as an invaluable tool for me when I meet with the doctor in June. April 25 - Ben participated in the Special Olympics. Although he had a big and busy day, he did not go to sleep. He did not sleep until the wee hours of the night, or early morning, depending on your viewpoint. April 26 - April 30 - Ben did not sleep well. April 29 - Ben seemed ready to crash for an early night. The craziness was over. (Little did I know it was just the beginning.) April 30 - Ben came home from school at 11am because he was sick at school and had seizures. I called the neurologist. Doctor increased current meds to 6 pills in the
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.