Epilepsy, I Am Tired Of You
The other morning, I was reminded all too well just how unpredictable epilepsy can be. Livy began having seizures at 6:00 AM and didn’t stop until 8:30 AM. By the time she fell asleep, she had close to 50 of them…50 in less than 3 hours. I sat there with her, wishing them away and then praying them away. “Please let this be the last one. Please, for her sake!” Waiting...then shaking again and again.
As I was stroking her hair to comfort her, I felt the scar in her scalp and the groove in her skull from her brain surgeries. They are in the past but they are also very much in the present. I was there in the moment, sad, so sad for her. She is just a child. After each seizure, she let out a small soft sound as if to say, “Daddy, please make them go away.” The look in her eyes brought me back to the NICU the morning Livy and Hailey were born. It seems we are moving ahead in many areas of our lives but we always have one foot firmly entrenched in the day our lives would change forever ten years ago.
As we start Lemonade for Livy weekend and continue to turn states and countries purple and add lemons to our maps when people register, it often feels exciting, almost like a game. But I assure you, it is incredibly serious. 10's of millions of families go through the same thing. They witness their children having seizure after seizure and they feel helpless. Millions more adults with seizures struggle to live the lives they want to lead.
We were recently touched by a death in the epilepsy family. The disorder has taken another beautiful soul from this world. We did not know Soror Amber Pratcher, but she is now a part of Lemonade for Livy. Amber passed away just 4 days ago on July 20th due to epilepsy. A fundraising page under Lemonade for Livy was created in her honor which is how her passing was brought to our attention. We are deeply saddened whenever we hear that epilepsy has stolen another life and left a tremendous void in return.
For those families and individuals and in honor of Amber, we are here fighting and will not stop. We have seen enough and can no longer accept the status quo.
Lemonade for Livy is about hope and inspiring people to do something for others. But it is also about fear, uncertainty, anger and stress. All of the emotions that arise when dealing with seizures. I am tired. I am tired of watching my daughter live her life complicated with epilepsy and all that goes with it. I am tired of the emotional drain. I am tired of putting on a smile and telling people things are okay. They are not. How can this be normal? We tell ourselves it is normal because we have to watch Livy constantly go through it. It is our defense mechanism. Some days are worse than others and we are reminded how fragile life truly is.
Most of all, I am tired that not enough is being invested to find answers. The epilepsy community is 65 million strong and has millions more family members and friends to support them. Together we can make a real difference. Please don't wait for someone else to do this for you. Get involved today. That choice is one that you control.
To participate in Lemonade for Livy, please click here for more information and to register.
My heart breaks for precious little, Livy, and it breaks for the rest of your amazing family, Jon. I will continue to pray for all of you.
We're happy to have opened our stand yesterday and proud to stand with you. Your posts serve to remind me that any "stress" I am feeling is inconsequential compared to what you go through.
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