Thoughts I never considered that would occur

Another call last night..10:35pm; " I think S is having a seizure", the scramble for clothing and the dash up the stairs to find our son in the midst of a brainstorm. Part of life, stuff we deal with yet never simple and never totally "normal".

How can it be normal to see your child "gone" and the body taking over, seemingly with a will of its own. To see a body in unnatural contortions and manners, to see the vacant stare as you count the minutes. As a parent you wonder when will this one stop? what caused it? what needs to change? To realize, again that you are not in control, and cannot truly control the life and breathe of your child. To recall that the one you birthed is truly in the hands of his Creator. To trust that He has numbered your child's days and pray that the number is much greater than what he has lived thus far.

And the minutes tick, as the brain does its dance, the dance floor being your child's body. The moves shift and change, not always following a set choreography. Unexpected moves bring about new concerns or sighs and hopes that this dance will soon stop. Questions are in our mind, as the clock ticks and the dance continues, should we make a call? why did we not stock the drug to call a sudden stop to this brainstorm dance. And the dance goes on, seeming to increase in passion. And then with a sigh it is over. A body rolled over and a head lifted that tells me that my child is back.

Sweet is the fellowship and communion between parent and child in the moments declared to be "post ictal". The hearts of these parents breathed a sigh of relief that their child has returned to rule over his brain. That the boy that brings such delight is now with us again and we cope together with the life that we live together. Sleep soon will come, but not before we pray and thank God for life, for health and the days ahead.

Who knew when the word epilepsy was first spoken that such thoughts and experiences would come, I sure didn't. Life is always full of surprises, adventures and opportunities to live dependent, trusting God to care all of us in the midst of life. That trust has helped us to walk through this journey for alone I think the journey would be much more of a challenge.

resetting the clock

We went to the doctors last week and all was smooth, new meds were not a hit, so back to old meds and all seemed good.Tthen from upstairs I heard the word "seizure" up I sprang and trotted.

I missed the fullness, but was left with the aftereffects- bloody lip, 1/4 of the body not co-operating for several minutes, confusion and tears and then sleep... the sleep that erases memories. This morning no memories except listening to faithful Hank the cowdog while on a sleeping bag the floor. It was his choice of a safe place to be after the seizure. We were happy to accomadate. A good nights sleep and we start the clock again. We were up to 7 months without a major seizure- YEAH!! We press on, work on keeping sleep secure, fluids up and lots of healthy exercise along with meds. We do our part, the rest is up to God and his brain's wiring.

Epilepsy... something I thought to be far off... something i held in the back closet of our family, then the front closet, now some days it visits us in the living room or bedroom. Some days a companion. Often more like an overripe relative that you want to leave but you just can't figure out how to make it want to go. All part of the journey that we are on, learning grace, learning wisdom, learning patience and faith and trust.

Last night again I breathed a sigh of relief and my spirit a prayer of thanks for the life we have, the life extended, the briefness of the brainstorm that gave me a reason to trot upstairs and love on my son for a bit.

And so begins day 1 as the clock is reset.

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.