For the past few weeks, I have delved through old videos and pictures of Mickie during her early battle with Epilepsy to provide content for the Mickie’s Miracles website. I had not seen many of these since they were taken. The raw footage immediately took me back in time. Like a Back to the Future time machine, I was transported to the space I occupied during the worst time of my life. I felt emotions well up inside, tears spilling onto my shirt and the documents before me. The fear of uncertainty and intuitively knowing something was gravely wrong was overwhelming. Even worse was not knowing who to turn to or how to fix it. I experienced such loneliness and frustration hearing loved ones say “she will grow out of it.” I remembered the helplessness that overcame me watching my baby seize uncontrollably and failing yet another medication. I was so weary from sleep deprivation, hovering over Mickie, and analyzing her every gesture. All of these feelings clung to me tight, letting me know my only option was to surrender to them.
Sitting there working with Katie on the specific details of Mickey’s journey I wanted to distract myself…run and hide. Instead, I let myself go deeper. What if? What if I hadn’t fought so hard? What if we had not braved the brain surgery? What if I did everything “right” but my prayers had not been answered? The answer led me to the bleakest, darkest, most unimaginable place. The reality no parent should ever have to face. I pushed further. I reached out to my group of epilepsy mamas I love so much, who face this nightmare everyday. Epilepsy stole their most precious gifts like a thief in the night. Their hearts were irrevocably broken. Their dreams for a future with their child dashed. I delicately asked them if I could honor their babies on the website. Mickie’s Angels are the epilepsy warriors who’ve lost their battle, their lives stolen by this devastating disease.
The experience left me humbled, renewed and passionate about my WHY. Everyday I have the opportunity to shed light on a catastrophic problem and ask why is it so gravely overlooked. Why does our Federal Government spend less on Epilepsy compared to diseases that affect fewer people? Why of the $30 billion the National Institute of Health spends on medical research, only half of one percent is spent on Epilepsy research? Why awareness and urgency are not at a level where every parent is prepared to battle epilepsy? For if it were not for my maternal instincts, I would not have moved and reacted at the urgent pace we needed to fight the devastating effects seizures had on my daughter’s’ developing brain.
This work saves me. It brings me face to face with the blessing of Mickie’s success. I am honored to help families navigate the epilepsy treatment journey as quickly and effectively as possible. Not all stories end as happily as Mickie’s. All the parents and kiddo’s I’ve met are warriors committed to beating epilepsy in their own way. When the website launches, Mickie’s Warrior and Angel stories will be shared on our page to educate and inspire. Remember, should you ever meet a child with epilepsy please refer them here to MickiesMiracles.org. Together we can educate, advocate and save one more child.
Blessings,
Mickie’s Mommy