LIFE WITH LIVY
| Episode 20: 10/18/2013 - I Imagine A Cure
When I look into Livy’s eyes, I know more is going on than there seems to be. She can’t talk or communicate in the typical fashion, but she has her own way of letting us know how she is feeling. Most of the time, we are kissing her and hugging her. So her smile lights up the room. She is just like any kid who feels the genuine love of her family. When she is uncomfortable or hurting, she tells us by her sounds as well as increased seizure activity.
I often put my head against hers and whisper, God, please let me hear what she is thinking. Just this once. My prayers have yet to be answered but if I really listen to her sounds and look at her facial expressions, I can almost get there. Sometimes my imagination gets the best of me. Is she scared or confused. Does she feel lonely or trapped? Does she want to say something but her brain won’t let her get the words out? Does she want to tell us she loves us?
I have learned to repress the feelings of sadness I feel when I see her lying on her mat and watching Hailey run and jump and dance around. Does she want to get up and dance with Hailey? Does she want Hailey to play a game with her? So much of what we remember and cherish as adults is our memories of being kids. Will she have those memories to fall back on years from now? Are we giving her enough of the experiences she deserves?
Epilepsy has stolen so much of Livy’s childhood. If I could give epilepsy a face it would be one of a conniving, maniacal thief. Epilepsy doesn’t care what it does to people or who it hurts. It leaves life-long scars both emotional and physical. It robs indiscriminately and feels no remorse. Epilepsy strikes without warning leaving confusion and despair in its path.
But where there is life, there is hope. I often imagine what life would be like for Livy without epilepsy. She would still have many disabilities but she would not live under the constant threat of seizures. She would be able to develop to her full potential without the mind altering side effects of medications. I imagine what life would be like for the rest of my family. No more constant vigilance and the fear that we are one step closer to going to the hospital. The heartrending, emotional experience of watching Livy’s smile fade during spans of prolonged bouts of seizures would be only a bad memory. I imagine a day when Livy and the 65 million others with epilepsy can live in peace. I imagine a cure.
In the video, Hailey describes various reasons why we need a cure. She also talks about our upcoming Imagine A Cure Willy Wonka themed fundraiser in November to support the Epilepsy Foundation. Epilepsy is one of the least understood and most underfunded brain disorders. We believe that a cure is possible and are willing to do all we can to help find one.