I have come to realize that I can’t control everything, in fact there is very little I can control. It is a frustrating realization, especially when it comes to the care of your child. When you are told that your child is sick, you would move heaven and earth to get them the treatment and help that they deserve. But wait, you have to do it on the insurance doctors and hospitals timeframe. I promise you that their timeframe does NOT meet yours. I have called everyone that I can at the hospital, everyone I can at the doctors and even other professionals to help me navigate this intricate world only to be told we hope it will happen in the next couple of days. I could almost live with that if I was not told that three weeks ago.
My baby needs help and is not getting it!! What do you do as a parent? I am forced to sit back and wait. Wait on someone else to realize that he is my world, my everything, my son and that I need him to get help. That he will thrive better if provided these resources. Nathan is losing his vision, and I don’t want to make any bones about it. He is running into walls and cars. It is progressively getting worse. He needs to get as much treatment as possible before the Optic Atrophy takes over and his vision is gone forever.
Right now, the doctors say that he has visual memory. That is why these postcards have been so important to our family, because one day he will be able to recall that memory that he had. In the future we will be able to talk to him about the “journey” he went on as a child and I am sure it will be one of the most memorable things he had as a child.