brain storms

This morning we awoke early in preparation for the days events. First up on the schedule was Dad vs #4 on the wii, then on to the computer for some Battlefront action followed by b'fast out at Hardees with mom. So began our day of early waking to sleep deprive our child so he was ready for an EEG.

What was last week a "lets see what is going on" scheduling of an EEG (monitoring of brain wave activity) this week became a timely event. Earlier in the week our early morning sleep in time was interrupted by pounding feet and a knock at the door- #4 was in the midst of a brain storm. A seizure. A short one but one that interrupted his life and ours for a few minutes of time. It was a quick one, unexpected as they all are, but powerful.

This morning as I sat in the darkened room and watched the lines jump and bounce I wondered at what I was seeing. Over the past year we have changed medications slowly, adapting to a new drug that seemed to bring control. Only to find during a fall campout while sharing tent space that our sleep was interuppted by the sounds of a new brain storm. Now spring break has again brought our attention to the ever present, not often thought about guest to our lives- epilepsy.

Todays' revelation coupled with the midweeek "brain party" as I had dubbed it resulted in knowledge that status quo was not enough. So I returned home to add more pills to the pill boxes and again begin on the journey of increase in hopes of stilling the storms and calling an end to the pauses that are more than a pause.

I am grateful for the time spent in sheltered workshops and group homes as a young adult, where seizures were seen and adjusted to. Those days prepared me to respond not react to what I might find when I enter a room where a storm is occuring. I am grateful to the calm that is peace in the midst of reality that all electrical circuits are not firing normally. I expect that all will settle and rest, though in the back of my mind I know it could take a while, I pray that it is quick.

I find that as I dialogue about what our life holds that it is a reality that I don't process in its fullness, but face it bit by bit, event by event. As I shared the timeline and history recently I realized that we have walked a path of much variety and variation. That the silent presence of epilepsy is truly present, no longer just something in the back closet. It influences and affects us and yet we work hard to limit the impact and to live life fully in the midst of its presence.

Months ago epilepsy was a back closet topic; acknowledged but kind of ignored and in the realm of denial. Today I am more welcoming of it, more accepting of it, sharing it more freely. I have talked with our son of the whys and how are you doings? that surround living with seizures.

I am sure he is weary of the unexpected, tiring, and extra parts of his life that come with being a keeper of the storms. It is part of our family life for now so we prepare, train and respond as needed. We pray for and thank God for our doc's and all in the health care profession who help us on this journey. We are made more aware of its hazards when it makes the headlines with hollywood attention, and we breathe easy and kind of forget when weeks pass without any hint of activity.

Brainstorms, brain storms- same letters, different activities. May your life be full of brainstorms and my your heart and head be full of compassion and grace to those who experience brain storms.