For Ben

Ben Miller was born in March 1991 a healthy little baby. The world was full of opportunities for him, and his parents had big dreams and hopes for his future. At age three months, his life was changed forever. Within weeks of his first immunizations, Ben began having seizures. At first the doctors were hopeful that the seizures would be outgrown or controlled with medication. His first two years of life were spent in a drug haze. He was placed on every seizure medication, in every combination, and in large doses, but Ben’s seizures continued. 

Just before his third birthday, Ben underwent seizure surgery in hopes that he could be healed. He had part of his Parietal, Temporal, and Frontal lobes removed surgically. Of course as his mother, it was the most horrifying experience paling only to the experience of watching his little body twisted and writhing from the relentless seizures that had taken over his life. The surgery was not without side effects. He now had right-sided partial paralysis and significant speech impairment. And, sadly, it did not work. As the years have passed we have tried new treatments including the Ketogenic diet which he was on for ten years, and the implantation of a Vagal Nerve stimulator, twice. Both have had minimal success. Ben is now in his thirties. His seizures are severe, frequent, and daily. Some days are great, and some days he doesn’t remember our names. Yet, he still remembers Saturday’s are for baseball.

From the beginning we were hopeful that although Ben had seizures, he would be a regular kid in every other way. He would go to school, sleepovers, play sports, and have a normal life. As the years passed it became quite clear that these dreams were not going to be realized.