The Support Of Fireflight – Tiffany Kairos & Epilepsy Awareness

tkepilepsy

 

In September of 2012, I was introduced to a video on Youtube of an elderly man who had at that time recently lost his wife. As the description said, it truly did uplift, inspire and move me to tears. Even thinking about it this moment wells tears in my eyes. The message that this man wanted to share with the world was so compelling and awe inspiring, it caused me to think quite a bit about my diagnosis with Epilepsy. What would I say if I could share a message with the world? Others all around the world who might know what I am going through. I was motivated to create my very own video using, not my voice no. But simple white cards. With written words from my heart. My message to the world. And a song to go with the video like a match made in Heaven. I took careful time deciding which song should go alongside this video and I decided that the band Fireflight was the best choice. Their song to go with my video would be their song “For Those Who Wait”. Before attaching the song to the video, I listened to this song over and over to assure it was the perfect fit. With each listen, I was brought to tears thinking about my diagnosis. Thinking about life. Thinking about every persons diagnosis, all 65 million of us and life as a whole. I thought about the lives lost to Epilepsy and the families and friends left behind to grieve. On and on. The first few takes of the video, I had to stop mid-way because emotions ran high and tears fell down my face. I had never done anything like this before. Recording myself, delivering a message so compelling before. So filled with heart and soul. So much emotion and inner strength. It was completely new territory for me. But I felt so compelled to want to do this not only for myself but for all living with epilepsy and the friends and family supporting too. I prayed before recording the third take and the third take happened to be the take that is what you see now on Youtube! All the while, I was thinking of the entire world, silently praying for a cure and better understanding of Epilepsy. I decided to title the video The World Needs To Know because indeed, the world truly does need to know so much more about this condition on a variety of levels. It is a condition that can happen to anyone at anytime for a vast number of reasons. Click the name above to watch my video. With each flash card that I wrote my message, my heart swelled with compassion for the world and heavy heartedness for the condition that lay upon my shoulders. I remember it being close to evening time and ever now and again in between writing the cards, stopping a moment to enjoy the beautiful glow of the afternoon/evening sky. I could feel the presence of God blanketing me letting me know that everything was going to be okay and that this message right here was something that I very much needed to do. When I completed the video and it had been pieced together just right, it was time to watch it for the very first time as a whole. I remember feeling a blend of nervousness, shyness and excitement swirling within me, yet somehow too, not knowing how I would feel once the video would begin.

When I watched the video for the very first time, coupled with Fireflight’s song “For Those Who Wait”, chills showered down upon me that I didn’t expect. Tears immediately flowed down my face and leaped off of my chin. I was looking upon my very self. A mirror image with a message. Before my very eyes was… me. Talking about living with Epilepsy. My fear and my determination to fight this! It was intriguing sight to see. I can’t quite put it into words. When the video came to an end, I felt an inner strength that I had never before felt. A courage I had never before felt. To want to take on Epilepsy head on.

My family and my friends embraced my video “The World Needs To Know” with great enthusiasm and for that I am forever grateful! I am also grateful for their encouragement and support as I grappled with coming to terms in the beginning with my diagnosis and giving me spiritual strength to stand strong and seek out positivity always always always. I was and will always be especially grateful to my husband Chris who helped me piece together the video to what it is today. He is so great at what he does and he helped my vision to become reality.

February of this year, I was rushed to the emergency room and ICU having suffered 3 Grand Mal seizures followed by an additional two seizures during EEG testing. A major setback having come so far from being grand mal seizure free. I spent many days in the hospital recovering, having my medications switched and adjusted, and plenty of routine tests. A few short days after coming home from the hospital, on February 17th, I decided that I wanted to reach out to the band Fireflight to officially ask for their permission to use their song “For Those Who Wait” within my video “The World Needs To Know” in the name of Epilepsy Awareness. In addition, The Epilepsy Foundation Of America had expressed consideration to want to share the video on their Facebook page which I was absolutely overjoyed about!

Not sure what to expect, I waited patiently and reminded myself to not get my hopes up if I didn’t get a response from the band. Though, I had seen occurrences of bands, celebrities etc. reaching out to fans before, I wasn’t so sure that I would have the same odds of that happening. As days went by, I prayed over it and asked family to pray over it too. Over the course of the next few days of contacting the band, I was adjusting to my new epilepsy medications, readjusting back into everyday routines, and working out my emotions of all that had happened over the course of the time of the seizures, the hospital and returning back home again. 10 days later after writing Fireflight on February 27th I received notification on my phone that I had a Facebook message waiting for me. What awaited me in my Facebook mailbox had taken my breath away, arose a smile upon my face and swelled utter joy within my heart and soul. Lead singer Dawn Michele and the entire band of Fireflight had responded back to my message asking for their permission to use their song “For Those Who Wait” and their support in my journey to advocate for Epilepsy Awareness!

Visit Fireflight Website

Visit Fireflight On Facebook

ff_blue

 

In response to my message, Dawn replied kindly, “Hey Tiffany! This is something we would love to support you in! As far as we are concerned, you are more then welcome to use it. God Bless, Dawn” Instantly, I leaped up from the couch and ran to my husband and told him the good news and immediately we thanked God for such a tremendous blessing to have happened. A very special thank you once again to Dawn and the entire band of Fireflight for their permission to use their song and support in my epilepsy journey!

For those of you unfamiliar with the band Fireflight, they are a phenomenal American Christian Rock Band that I would highly advise you to have a listen to!

Soon after receiving such amazing news that I will never forget, HaHa, The Epilepsy Foundation Of America made the decision that they would like to share my video on their Facebook page for their supporters to have the opportunity to watch. Overjoyed is a word that just couldn’t compare to the feeling that I felt and still to this day feel. My tears of pain and heartache that I shed at the hospital and at home for the circumstance that I found myself in and the setback that I had encountered had instantly transformed into tears of happiness and joy. Fireflight, The Epilepsy Foundation Of America and the world would have an opportunity to see my message for Epilepsy Awareness. Learn more about Epilepsy. The stigma surrounding the condition would have more chipped away from it.

Needless to say with the collective blessings that followed my five seizures and stay at the hospital, I found myself on my knees, tears streaming down my face praying and thanking God for strengthening me, helping me through such a difficult time and allowing me the opportunity to advocate for epilepsy awareness in all the ways I know how. It caused me to re-realize even more just how important advocating truly means to me. How important life means to me. How important family and friends mean to me. How important embracing the little things mean. I could go on and on. As if I was reawakened to just how amazing everything is. As if I was reignited with a fuel to keep on fighting for this cause that love.

🙂 I end with a smile

Leave a Reply

Your email address will not be published. Required fields are marked *