Things have coasted along so steadily that I almost forgot about this blog. James seemed to gather a little more energy recently; he decided he would go to his day program more often. Mom and Dad would visit often and see his smiling face, watch a little TV, eat a snack, and play cards. We were in for the long haul.
Wednesday night, June 5, I got a text from a caregiver that James had had a one-minute seizure. He was given Ativan and that was that - situation normal. The next morning, we got urgent calls and headed to Livermore. James was having a long seizure - 5 minutes, longer than he had had in a long time. When we got there, he was gone. There was no pain, no long suffering; our James was in heaven.
Later we heard from James's neurologist about "SUDEP" - sudden unexpected death in epilepsy. People who have uncontrolled seizures and other neurological issues (like cerebral palsy) have a higher risk for this syndrome. Well, check and double-check.
As I recall, I started this blog when we were going through the unbelievable trauma of 2007. I believe it was then that we did our serious grieving, having our hopes for better control dashed, spending every major and minor holiday in the hospital, trying to keep the home fires burning and the homework turned in ... We knew the direction things were heading then, but a long period of relative stability lulled us into a routine. We are of course tremendously sad not to have our happy, sweet boy with us anymore, but we know his extreme limitations and troubles are over.
Our celebration of James's life will take place on June 23, at 4.00 pm, at Valley Christian Center in Dublin. I have been scanning pictures for hours. We are glad that some family is coming. We have had superlative support from our churches, Mary's co-workers and friends far and wide. In days to come, we will get his house in order, but now we are just thinking about what a wonderful gift we were given in James. God taught us a lot about patience, but love is what we remember.
