My Warrior Princess

It has been two years since my daughter (now 6 ) continously convulsed for three hours before my eyes. It is an image that will forever will be seared in my memory. Throughout the past two years, it has become the focal point that we fight every day to move away from. The year was 2012- the same year I suffered a heart attack (shortly after her episode of status) and was thrusted into my own personal health battles. But it was also the year we found our wonderful epileptiologist and the year our sweet puppy was born. Aside from the turmoil and anguish we experienced as a family, we also had moments of joy, hope and faith. Those are the moments that steer my days into the light and away from the darkness. Part of dealing with this awful disorder, is letting go of your grief in order to have the strength to face each day stronger than the next. Some days are easier than others. A good day can come to a screeching halt in just a moment. But I find my focus in my daughters' eyes as well as in the sweet face of a puppy laying across her head and not leaving her side. The purity that is present there makes me remember to have hope and to faith. Dory in "Finding Demo" eloquently said "Just keep swimming, just keep swimming". In our house, we say "Faith, trust, pixie dust" which is quickly followed by my daughter's saying "faith, trust and kicking butt!".  Some days I do feel like we can "kick butt". Other days, I feel like E has kicked our "butt".  But every day, we start anew. I cannot dwell on the darkness this disorder brings, because it can be so paralyzing. I need my strength and the strength of my daughter to face the challenges that await.  I was so grateful my daughter survived her Kindergarten year, with being healthy enough to attend school regularly. I would be lying to say that there were not speed bumps along the way. I had to fight to have a sticker removed that read "Seizures" in large black letters plastered on her school name tag. I put a 504 in place to implement accomodations in her school setting- many related to playing to her strengths as a student and not her weaknesses. Memory difficulty, specificially retrieval of learned information is hard for her. That has made reading, writing and math a struggle- but not impossible. Being an educator myself, I have taken on the role to teach her how to read, by playing to her strengths as a visual learner. And she is on her way- because I believe in her and I can see how intelligent she truly is. She was made strong, bright and determined as can be, for a reason. I know in my heart, she will make a difference in this world- that is the compass that keeps me moving forward.  She is also learning how to keep her body healthy by regulating her activity level, resting when she needs it and by eating a high protein diet. And I get to play the role of teaching her those habits as well as mirroring them in my own life. I still take her to a nutritionist monthly. She sees her epileptiologist every 3 months or so. I track every moment of activity using Seizure Tracker online.This week I had to note that she appeared to "daydream" and went through the motions of the day- the events she has no recollection of.  I pray every day that she will be seizure free. But when the storm hits, I go into survival mode and do what is needed to steer her out of the fog and recover from the damage done. I tell people that you never know how you are going to react- the well documented "fight or flight" phenomenon. We definitely fight every day against E. That is why I wanted to share our journey with all of you- that we are doing well. My daughter is thriving. I am thriving. We will not be defeated by E. Sometimes, I just want to shout that into the void- put it out into the universe. Let E know it has not won in this battle. As a community of caregivers, we all need to shout that into the void. So today, if you are facing E- look it in the face and say "you will not take my child, you will not defeat me, I am stronger than you and you will not define my life or that of my child's." Or if it is too hard to make than proclamation, remember "just keep swimming, just keep swimming." Because we can get out of these dark, murky waters to find our own personal oasis of hope and strength.