I wrote this just after the death of John Travolta's son. He was 16 and died from a seizure. That is something that we have to deal with as well…knowing that at anytime, a seizure could take Taylor away from us. I decided to repost it here…where it will finally have a home.
I've seen the news reports on the death of John Travolta's son. It breaks my heart. I know, first hand, the fear that grips your life everyday when you have a child that suffers from grand mal seizures. I know what it feels like to see your child fall in a heap, hitting various body parts on furniture and the floor as they thrash around. I know what it's like to take your child to the ER in your car and in the back of an ambulance because of injuries suffered during a seizure or because the seizures won't stop.
I know what it feels like to give your child one medication after another in the hopes that this is the one that will work. I know what it's like to plan your activities around "is this a 10 seizure day or a 100 seizure day?" I know what it's like to have people stare as your child hangs on you while she has a seizure in Wal-Mart. I know what it's like to watch medicine after medicine, surgery after surgery, even brain surgery, fail to stop the misfiring of your child's brain. I know what it's like to have a doctor look you in the face and say, "I'm sorry, this will most likely be how your child dies". I know what it feels like to go into your child's room praying this isn't the day you will find her gone instead of just sleeping longer than usual.
I also know how cruel and callous people can be online. I have seen people think it's okay to call people bad parents and be mean and nasty simply because they think anything goes as long as it's online. I know the hurt words can cause. Maybe before people start spewing their hatred and misery towards someone else, they should take a good look at themselves and wonder what exactly they are doing to make this a better planet. Maybe, those small-minded people who have nothing better to do than to criticize how other people parent, should ask themselves, "what would I want to hear in my time of sorrow and need" instead of "what can I say to be nasty".
Because I refuse to end this in a bad way and because my child deserves better: I also know the kindness of strangers and their offers of help even when there is nothing they can do. I have felt the hugs of nurses and doctors when their medicines can't help and all they can give me is their compassion. Most importantly, I KNOW the love of my precious Taylor and the utter joy that she takes in every moment of her life.