Special Needs Dad 365

Dear Epilepsy
We're almost at the end of National Epilepsy Awareness Month and this is my first post about epilepsy. Sometimes, I feel guilty not doing more to spread awareness. To be honest, I talk about epilepsy and seizures all day long as a part of my role at the Epilepsy Foundation of America. I read dozens of stories about kids and families in various phases of their journeys. Then, I have to watch Livy have her daily seizures as well. The emotions I feel regularly are anger, hope, frustration, inspiration, helplessness, and empowerment. It is a high and low mix of feelings and by the end of the day, I am so exhausted by the disease that I have to find a way to turn it off.

However, I do have something to say to epilepsy to bring some perspective. There is a lot that builds up over time. Perhaps this will help people understand epilepsy a little bit better aside from the prevalence statistics such as 1 in 26 people will be diagnosed with epilepsy, 65 million people across the globe have epilepsy (3.4 million live in the US), and 1 in 10 people will have a seizure in their lifetime. So here goes.

Dear epilepsy,

It has been a while since I last wrote to you. Even though we see each other regularly, I often find it hard to tell you how I really feel. I want you to know that you are the cause of our daily struggles. The seizures you so abundantly give to Livy are a source of continued sorrow. You seem to find enjoyment in stealing her smile when you spend time with her. After all these years, you would think we could find a way to get you out of our lives. We are still searching. As we pursue a solution, you always find an opening to invade our family. Let me remind you that you are not welcome!

Do you know that I think about you from the moment we give Livy her medicines in the morning until we give her a final dose at night? Sometimes, you even infect my dreams. Thankfully, you have not yet found your way into Livy's. She is most peaceful when she sleeps. It is like her shield from you. There are mornings when I lay my head against hers and relish the calm because I know that when she wakes, you will be waiting for her.

If you had a heart, you could understand what it's like to watch your child endure such trauma. Let me describe it to you so we are clear. The stress you bring can be unbearable. The sorrow, the fear, the inescapable anguish that you cause makes me furious. There are days when it feels like you are ripping and tearing out my insides and I have absolutely no power to stop you. At the same time, your crushing pressure squeezes my body like a vice grip. It's seems you are trying to wring out every last drop of emotion so I no longer want to feel anything.

But as relentless as you are, I am equally determined. The more you push, the more I will push back. Know that every action has an equal and opposite reaction. Remember that army of warriors I wrote to you about several years ago? The one that keeps multiplying and is coming for you? We are tired of seeing our loved ones entwined in your vicious tentacles that slither into all aspects of our lives. We have hope on our side and motivation in our corner. You just need to look around at the inspiring stories of those you affect to know that we are growing stronger.

Epilepsy, I will keep writing even though it means nothing to you. That is obvious in the way you like to visit us on holidays, birthdays, celebrations, and every other day inbetween. You don't care where or when you call on my Livy. Your callous intentions are clear. I know you too well. You may think you are clever because you keep finding ways to intrude into our home. Let me reiterate. You are not invited. You never have been! You chose us, we didn't choose you. Never forget that when you did, you chose wrong.

Livy's Dad