And on and on it goes...

Here I am again. Rummaging through my mind...that is, whats left of it. I've had a headache for the past 5 days. It was like a vacation in hell. All I could do was lay on my bed writhing in pain and anxiety. But today I am better. It's raining now, a good time to have a cup of my favorite coffee and find some solace and friendship in writing...

Michael's seizures began to manifest rapidly about 2 weeks after his first episode at Liberty House. Our pediatrician referred us to a neurologist, and the neurologist ordered an EEG (which is essentially a brain scan). That was the day it was confirmed Michael had epilepsy. This also marked the beginning of my experience with numerous doctors. Many were not helpful or even a little compassionate and very few were caring or had any real insight.

We had been working with the neurologist for about 3 months. I knew nothing about epilepsy, so I was completely at his mercy when it came to seizures. But I had previously worked at Kaiser medical clinic as a medical assistant, so the one thing I did know something about was blood tests. It had been part of my job description to fill out lab requests and explain them to the patient. I questioned the neurologist on the why of one particular blood test he had ordered, which I thought unnecessary. I communicated this very diplomatically to his assistant and waited for his reply...I never got one. I called his office, and his assistant told me he no longer wanted to be our doctor and we would be receiving a letter from him stating this. I was devastated. My son was having seizures. The medication this doctor had him on was Dilantin and Phenobarbitol, which were not working and Michael was having serious side effects like loss of balance and loss of speech.

The letter came saying we were horrible parents and he could not possibly work with our negligent care of our son. This was the beginning of much pain, grief, and lonliness. Disappointment followed disappointment. My husband Greg and I were having marital problems. We had no money and we had a beautiful 7 year old daughter who had a verocious appetite for life. She suffered too- not only the loss of her adorable little brother but there was a level of stress in the house that she later needed to escape from.

And of course as the story goes, there were the friends who said all the wrong things and never cried with us, or came over just to say "your not alone". Everyone had something to say. Like in the biblical story of Job, some came blaming us others said we needed to fast and pray or that Michael had a demon. Then of course came the "you of little faith" advice... All that well intended garble made it worse and as Michael's seizures increased so did the pain of watching our child suffer and not be able to do a thing.