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.

The Peace We All Need.

I'm at my kitchen dining table listening to the fire lapping up the crackling wood. God, I love that sound. It seems to soften all the rough edges in my mind.
My son, Michael will be 23 this coming January. He was normal to the eye at birth. He had learned how to ride a bike with training wheels when he was five years old and was learning to play the harmonica. Our whole family is musical. His father plays guitar and I play the piano. The neighborhood gardener named him Troubles because he was so mischievious. Like his storybook character, Curious George, he was always curious. favorite
Michael and his sister Jennifer were both born on the island of Hawaii. We had lived there since 1980. When he was 5 years 11 mos. old, I was shopping at a department store called Liberty House in Kaneohe and had brought him with me. While I was looking at a blouse and had my back turned on him, he had wandered off, being curious as usual. I turned and a few seconds later and I couldn't see him. I anxiously called out his name and began to walk around in search of him. That's when I saw my son lying flat on his back, his face blue and not moving. I began to scream over and over, "Call 911!" as I held his limp body in my arms. Part of me died that day and has never been revived but the parametics did come and Michael was revived. The parametics told me he had had a seizure and to contact his doctor. That marked the beginning of a kind of madness. The kind that cries out to God, "How could you take this beautiful child and bring him into a life of affliction?" I think what can make the madness is no answer. Heaven is silent. That is maddening. But we survive don't we, so is that an answer? Maybe.
That was day one of this chapter in my story with my son, Michael, whom i love more than my life. That unforgettable event marked the beginning of many more days filled with unbearable grief, doctors, medications, emergency rooms, dreams dashed and of course all the well meaning people whose words or lack of them made me feel alone and invisible.
All of our lives are filled with some kind of grief or sadness. So where do we find the peace we need? I think maybe we find it in the little things. The moments in between the madness, where joy can still be found in watching your children sound asleep, hearing their laughter, or the spark of hope that tomorrow might just be better.

just thinking...

Van Gogh said "Sadness will last forever." Sadness? I think Madness can last just as long. Madness is a lifetime of dissapointments and great joys- and how we reconcile the two. We can never be happy all the time- who would want to be? Maybe those who have never experienced what 'bittersweet' means or understood the life-death-life cycle continue to misunderstand the importance of sorrow. For me, there will always be a fine line between madness and devotion.
This is my first blog. A small window into my life as a mother, writer, and woman in constant search of inspiration. A lot of this blog will be on what I devote my life to as mother with a son who is mentally-disabled with a rare genetic disorder. I will share information on diet, medications, coping emotionally, and the overall social, political, and spiritual journey of our family.