I loved being pregnant, I loved everything about it, I did everything right. I ate good (well sort of) and I did not drink, I did not smoke, I gained the perfect amount of weight, I did everything right. On March 25, 2004 at 12:01 AM, I delivered a beautiful baby boy. They handed him to me and he cried, the most beautiful cry I had ever heard and they told me that he was HEALTHY!! Who would have thought that if I fast forwarded my life, I would be here.
This past week, we felt the need to take Nathan off a medication and on Saturday the reaction was so severe that we wound up at the emergency room of the local hospital. Unfortunately, we were told, there was nothing that they could do other than let it run its course to get out of his system. So we took him home, to see NO improvement and only symptoms worsening. It is the most heart wrenching thing to watch your child suffer and not be able to do anything to help them. On Sunday, we realized that we were needing to do much more. We took him downtown to Children’s Hospital Emergency Room. We spent 6 hours there and were talked to by several people to find out again that there was nothing that they could do and that we could stay in the little tiny room overnight or take him home. Anyone who knows Nathan, knows that he will not stay in a little tiny room for long. And since it was already 11 at night, we figured he would fall asleep in the car and we would just tuck him in and start a new day. The Doctors kept telling us that Monday was the magic day for him to feel better. And while Monday he did show some signs of improvement, he is not better. Something has happened to my little boy, I don’t know what and I don’t know how to fix it. He is not broken, but he needs help and I have to find a way to get it for him.
The Doctors want him enrolled in a day program that will provide intensive therapy for all of the things that he suffers from. Too many to name. Now, we wait. We wait for hospitals, and insurance companies and all the big companies to decide if he deserves the help that he needs. We wait, and we will wait as long as it takes to get him the help he needs.
I remember hearing him cry when he was born and thinking, ok, he is ok. I never thought years down the road to realize that health can fade, and it can fade in a child. I never would have thought….
Our 16 year old son has been diagnosed with Juvenille Batten disease. This is a very rare neurodegenerative disorder that is fatal. This is our journey.
Nathan's Batten Battle 