It’s November, and, while 2020 has been a wild ride, I still want to remember that it’s National Epilepsy Awareness Month! My name is Kelly Vedrani, and I am mom to Mighty Miles Vedrani, who has been an Epilepsy Warrior all of his life. Our journey has been full of twists and turns, and ups and downs. I’ve learned how strong we are, especially Mighty Miles! We have stopped at nothing to do our best in this fight. We have been through a LOT of things with regards to Epilepsy, and in honor of all 3.4 million of you who are fighting this evil disease, I wanted to share our personal journey. Here goes nothing…..
The first week in February, before Miles’ first Birthday, he started to have these clusters of random full body jerks. His arms and legs would shoot out suddenly. It started over a weekend and I thought it was strange. I called the pediatrician, who was unsure what it was. My “mom intuition” told me to call the Neurologist. That is where the whirlwind began. Shortly after, we found ourselves staying overnight at the hospital hooked up to the EEG monitor. Scared as hell. In walked the Neurologist……
“Your son has Epilepsy, ma’am. ma’am, did you hear what I said? Your son is having seizures”. These were words spoken by our Neurologist, and heard by me, in the voice of the teacher from the show “Charlie Brown”. I looked up at the Doc and said, “wait. WHAT? Hold on. REWIND!!” He repeated it. I realized what was happening. Everything was swirling. My son HAS Epilepsy. In this moment he is being diagnosed. Words spoken so, matter of factly…..had never been so life-altering.
Epilepsy? What is that? I mean….I know what it is….but what does it mean for our son?? Our little almost one-year-old son. I was about to come to learn exactly what Epilepsy was….and I had no idea how all-consuming it would be for our family. I quickly learned that Epilepsy was going to be a journey. One we were all, as a family, about to embark on.
So, a seizure is an event, and Epilepsy is the disease involving recurrent unprovoked seizures. Epilepsy is a disease characterized by an enduring predisposition to generate epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition. Epilepsy has many faces. There are about a dozen types of Epilepsy. Seizures don’t all look the same. Sometimes, they are even hard to notice.
So I mentioned Epilepsy is a journey. I often refer to our journey as an ongoing checklist of possible treatments. We have tried many and various medications, all strong, all with side effects. We have tried natural treatments; we have even tried, more recently, brain surgery! Obviously brain surgery was the biggest thing any of us had ever done. We have tested every gene, we have been out of state to consult with specialists. We are currently working on what’s next, and we still have options. Epilepsy is elusive. Even with something as intense as brain surgery, nobody can promise it will work. You just have to take chances, and hope, eventually, something works!! Even with that, sometimes knowing you tried everything….is enough.
Our journey is also very mental. As parents, you never want to stop trying to fix your child’s problems! No matter what they may be. It’s very hard to accept when your child has an “issue” of any kind. Imagine doing a brain surgery……then imagine it not changing your child’s issue much? It’s hard to accept that constant uncertainty. Epilepsy is a journey that has taught us that sometimes things happen that you cannot change. No matter how you try! This is where faith comes in. When you have faith, you believe in things you cannot see. You trust. This is the single biggest tool we have as parents in this situation. People often comment on my “strength”, and I appreciate that very much. It’s faith, however, that makes that possible for me. I’m dealing with something on a daily basis that I would have NEVER imagined or planned to deal with in my life. It’s a daily practice! I just have to trust, try to live amid the chaos. You know, really live! Not fall into that deep swirling hole of disappointment. I need to rise up and show my family that we got this! We can do anything. If we can, so can YOU!
Our son, Miles, is a very happy, sweet, and loving boy. Yes, he is a victim of this evil disease, but he smiles every day. Through the uncertainty, he kisses and hugs everyone, he laughs at the littlest things, he is one of my greatest teachers. We are ALL dealing with a lot of uncertainty and fear in the year 2020, and the one thing I want to share more than anything….in honor of Miles and the lessons he has taught us…..is that we can learn from him. He lives in the moment. He doesn’t focus on all the chaos. He focuses on the picture book he is enjoying, or a show he is watching, or kissing his brother or father and me. He focuses on what is right in front of him. Whenever life feels too crazy, I do the same. I follow him! I break it down, one moment at a time, and from there, I can conquer anything. So can you.
It’s epilepsy awareness month, and if you are so inclined, please donate to the National Epilepsy Foundation! Help the doctors and researchers find that one ultimate checklist item! The cure. Thank you for taking the time to hear about our journey.