This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!
Before you become a parent, you are continuously told “it goes by so fast”, “cherish every moment”, “Before you know it, your children will be out of the house”, and so many other phrases that insinuate life is about to move a whole lot quicker. You smile and nod at everyone who tells you these phrases and you might even think you understand what this means, but then your child is born, and you realize, you had no idea. From the minute your first child is born you are instantly placed into a lifelong game of tug and war, wishing time would speed up yet begging for it to slow down. Then if you are one of the chosen parents who are gifted a child with epilepsy, all the above takes on a whole new meaning.
www.sonyasstory.com is a blog written by a mom as she sails through life with 5 children. Her 4th child, Sonya, has a rare genetic disorder, CDKL5, that causes intractable epilepsy, cortical vision impairment, gastrointestinal difficulties, profound developmental delays, and many other deficits. The blog was established shortly after Sonya’s diagnosis in 2015 when she was 2 months old. In 2016, Sonya’s Story was turned into a non-profit organization in hopes to raise awareness and critical funds for CDKL5 and Epilepsy research.