A friend of mine - Katie has a beautiful son named Connor who also battles the seizure monster just like our sweet Lilly.
I wanted to share Katie's blog entry with you tonight because she wrote something that I couldn't have said better myself.
Grab a tissue. Take minute, read this. If it pulls at your heart strings then share this post. Tell everyone you know about sweet Lilly and Connor. These funds we raise will help to prolong my child's life along w/ give the opportunity for us to help other families and raise seizure awareness.
"The monster that is Epilepsy.
So there is this monster named Epilepsy, though he sometimes likes to be called Seizure Disorder. In my house he is called The Devil. He decided to move in my house and room with my son Connor in 2007.
Connor was a mere 5 months old. He has multiple personalities. He likes to be very loud and active at times, and then other times he likes to be quiet and still. You never know what he will look like. He is a monster that wears so many hats it makes my head spin.
This monster has made himself very cozy and comfortable here in my house. He is the houseguest that stinks after 5 minutes of being here. He loves to hide under the bed or in the closet for hours at a time, but then he feels the need to jump out and scare us all to death. He likes that element of surprise you see. He likes putting fear into our lives time and time again. We've tried persuading him to move on, maybe find his own apartment. He will go and take a walk around the neighborhood, looking at all of the other beautiful, innocent houses that are occupied with lovely families. He might take a peek inside or even walk into the living room of another house, but he ultimately leaves. He might be gone for a few days, or even sometimes weeks; but alas he always, always comes back. We plead with him to move on. We literally get on our knees praying that he will pack all of his stuff and hit the road. We yell and scream at him. We curse him. We've even tried desperate measures where we alter the state of our house, move his stuff out in the yard, and proclaim that he is GONE FOR GOOD.
Occasionally, he takes the hint. He'll get his feelings hurt and go away for a time pouting and stomping his feet. When we don't see him for a while we all celebrate!! Then here he comes banging on the door demanding back in. We fight him off with every ounce of strength we have. It is a fight that we have yet to win.
This monster named Epilepsy controls our lives. He has changed my son. He has done things to my son that I wouldn't wish on my very worst enemy. He makes my beautiful son shake uncontrollably, he makes my sweet boy zone out into outer space for what seems like forever where he isn't responsive, he makes my perfect love cry in fear. After bullying my precious boy till he can't take anymore, he goes and proudly takes a seat. How can this monster live with himself doing this to Connor and millions of others multiple times a day, every single day? I hate him. I despise him. Just seeing him makes my skin crawl and my stomach turn. When I see him in action I feel like someone is punching me in the stomach over and over again. I hate him with every ounce of my being. He has tried my patience. He has made me cry uncontrollably for barging into our perfect life. He keeps my son from going to school and seeing his favorite people and enjoying being a child. He has made me watch my 6 year old son be put into an induced, deep sleep to calm his little brain from the seizures. He has made me fear for my son's life. He has made me put my Connor's body to the limit with the multiple seizure medications that could easily harm other parts of his body just to stop the seizures. He has made me watch doctor's take my child into an operating room to put a device in his chest to regulate his brain waves. And he has even tested my faith in God, but that is the one thing that he will NOT win.
Though we may never rid our lives of this monster named Epilepsy, we have learned to get by as best as we can while he lurks in the corner waiting for his next move. We arm ourselves with the best weapons we can get our hands on to protect our boy from this monster. One thing is for sure, we will not give up hope that he'll be gone for good.......one day."