When I began this journey many years ago, as a first time Momma to a child with Epilepsy, I never imagined I’d be speaking out, sharing our story or blogging about it. I never imagined I’d even be an Epilepsy Momma. I thought my child would be perfect, normal… everything every parent dreams for their little one.
When Emmalee had her first seizure, I was fearful and unsure of what to expect. Having Epilepsy myself, seizures weren’t a new thing to me or my family but having Epilepsy and having a child with Epilepsy are two totally different worlds. I know the feeling of a seizure. I know the things that happen to me, the events that take place, the feelings and emotions and all of that between. But being a Momma who’s child had seizures became a whole new world that I had to learn.
Emmalee was my first with seizures and my easiest with seizures. I had no idea what our future held in those early days and I couldn’t see forward to know that my next two children would also bear this cross, that I was being led into a future where our days are filled with constant worry about what the next step of our day would bring. Epilepsy life is not for the faint of heart.
I am a Warrior. My children are warriors, too. Daily we fight an unseen monster in a battle we may never be able to win. But we never quit fighting and we take it day by day.
Awareness is important to our fight. Speaking out teaches others. There are so many falsehoods about Epilepsy and seizures, about Involuntary Breath Holding Spells that induce Epileptic seizure. The only way we can change this is to share our stories with the world. To let the world know we are here, we live among you every day, that even your closest friend can have seizures. Your child, your mother, father, brother, sister, aunt, uncle, grandparent… even yourself can have a seizure at any point in your life. None of us are immune to this monster and her terrible ways.
What we share matters. Correcting misconceptions, no matter how insignificant or small it may seem, changes the thoughts of others. Speaking up and speaking out about what we deal with each day, what happens in a seizure, what should and should not be done for us or our child, for our family member – all of these things educates and informs others of the truth.
Epilepsy affects every one of us, even when we don’t realize. At some point in your lifetime, you will know someone who has seizures, though you may not be told they have them since many people choose to not speak out. Learning how you can help is important. Epilepsy.com and Epilepsy.org both strive to educate others about what life with Epilepsy is like as well as show you how to help. They’re both great resources to learn more.
Nine years have passed since I started this blog. It is my 15th year as an Epilepsy Momma and my 39th year on June 20th of living with Epilepsy myself. This is a journey I never expected to take in my lifetime but I’m thankful that I can stand up and spread awareness for myself and my children in this day and age. Awareness starts with us.
Read more stories of living with Epilepsy and sharing awareness for Epilepsy at Living Well With Epilepsy.
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