Recently, I have been in a mood. Just one of those, don’t know why I am feeling this way and can’t quite figure out how to get out of it moods. This weekend, Jay finally sat me down and asked me what was going on. I told him I really didn’t know. But the more he asked and the more we talked, the tears started. We have Nathan’s eye doctor appointment tomorrow and I am terrified of what we will hear. I know in my gut what they are going to tell us, it is obvious to us and to everyone around him.
Jay looked and me and said, “there are three things that he can say to us.
1. It has gotten better.
2. It has stayed the same.
3 It has gotten worse.
And we know the answer, so why are you worrying about it?” But I don’t want to hear that things have gotten worse. I want there to be hope. I want them to get better. And yet, they won’t and I know this, but have yet to come to terms with any of it. I watch my little boy trying so hard to do the things that he should be able to do and that should come naturally to all children. He tries so hard to read and it is the biggest struggle for him. He has tools that he uses that help him see the words, but even then he struggles.
We have lived in the same house for four years and have not moved any furniture or changed anything and he runs into things all the time now. The steps in the front of the house he can’t see anymore and struggles to go up and down them. He runs into things at school. It is hard to watch what should be your very independent 9 year old scream for you to help him cross the street because he can’t see the difference between the sidewalk and the curb.
So, I go to bed tonight worried. I know the outcome, but it doesn’t take the dread away. I pray that God has a bigger plan in all of this and I know that to be true. His purpose for Nathan is great and I am thankful that most days I see the joy in Nathan’s eyes as he doesn’t really understand all of this. I think for now I am thankful that he doesn’t because I do not have the words to explain it to him. For now, we are thankful for what we have and feel blessed that he is who he is, because I wouldn’t want him any other way. In my eyes he is perfect!
As you know as well, Madison has Tourette’s Syndrome. Recently, her tics have gotten worse and we visited with her doctor. She had been on some medication to try and help with the symptoms but it seems that it has lost its ability to help. I asked if there was another medication we could try and she said that at this point it has morphed into something out of her comfort level and would like for Madison to see a Neurologist. We go on the 30th to see a Specialist who deals with Tourette’s syndrome. I am hopeful for Madison that this will be something that she can get relief from. She does not like it and she is embarrassed by the things that her body does. Thankfully, they are mostly facial tics and a few sounds and I don’t know that it is too obvious to those who don’t know her too well, but I know that she will feel better if she can get control over them. Please say a prayer for her as well as she struggles daily to be a normal 11 year old girl, living a very abnormal 11 year old life.