Sunday, March 8, 2015

I'm Scared

I need a chance to vent. Carter's eye appointment at Vandy Friday went very much like I expected, but it was devastating all the same. I've not been able to discuss it much with anyone though because our kids have been constantly with us and I don't want to risk completely losing my composure in front of them. I have a good cry scheduled for Tuesday afternoon so this post will have to tide me over until then....

He's losing his right eye. Not today, maybe not even this year, but he will lose use of that eye entirely. Everything that we do now, the patching, the surgeries, will only slow the progression. I was so hopeful after this last surgery that maybe we had found something to slow the rapid vision loss he had been experiencing. After this last visit, he has seen such a marked decline that he turns his head to avoid using that eye altogether. 

Many kids have a "lazy eye" that is treated with patching and eye muscle surgeries similar to the ones Carter has had. I want to emphasize that Carter doesn't just have muscle weakness. I can deal with muscle weakness. The way Carter's optic nerves developed is bizarre. Our nearest opthalmologist told me simply that Carter would lose his sight without much more of an explanation. We went to UK where they consulted with another children's hospital and ended up with differing opinions ranging from Coloboma to Glaucoma. 

We ended up at the Vanderbilt Eye Institute (which was convenient since he was already under the care of one of their geneticists as well as their autism clinic) under the care of an incredible surgeon. After several other visits, we were able to rule out Coloboma as being his problem. And though physically, the structure of his eyes indicates Glaucoma, we rule that out every 6 months with pressure tests. 

What we are left sucks. He is still at a huge risk for Glaucoma as well as retinal detachments (the doctors at UK said his nerves were about 4 times the size they should be). His vision is horrible. His best corrected vision (how he sees with his glasses) is 20/80 and that is with an insanely strong prescription. When I mentioned how his right eye (the weakest) always seems to be half-closed, all I could get was a sympathetic shrug and a nod. Apparently that's normal for eyes that are essentially dying. 

I have always been a control freak. I am terrible at delegating, I am terrible at trusting others, and most of all, I am terrible about handing things over to God. Medically speaking, it is not possible for this to be fixed. I am not personally capable of fixing this. The only healing there is to be had is if God decides to intervene, so clearly I should be handing the situation over. I can't give it up though. I am so so scared and angry. I know we were not promised an easy life, and I know terrible things happen, but I cannot look at my child for one second and not think that he deserves better. 

He has so much on his plate already and he has already overcome so much. In the past few months, we've all but forgotten that "autism" word. He is excelling in school, he has gotten stronger, he's not hurt this is a huge slap in the face and a terrible reminder that he is different. I make a very conscious effort not to force him to conform to what society views as normal but this is different. This is his vision and I hate that my child could be deprived of seeing the world around him. Bob keeps telling me that maybe one day they will have a surgery or some type of treatment that will fix this. My response is there are too many people in the world spending money on stupid pink breast cancer awareness t-shirts to care about fixing my child's eyesight. 

When his new glasses come in, we will start patching again. I get to enforce this all while knowing it is only to postpone the arrival of the day where he only has one functioning eye - an eye with the exact same defects. When we go back in September, we will start discussing yet another surgery which, again, will only postpone the inevitable. I cannot let him know how upset I am because I never want him to think he is damaged in some way or not good enough. He is beyond perfect and by far one of the three greatest blessings of my life. I just wish so much that I could make things better for him.