The No Title Post

I have been largely absent from this space because, quite frankly, I have lost a lot of my luster and did not want to have another whiny post about how hard is and how sad I am and all of that junk. On the other hand, in equal measure, I did not want to write about how our family was going to conquer it all, and blah, blah, blah. Because some days lately, the only thing that I would consider a conquest is getting through the day in one piece.

I am having an extremely hard time adjusting to Sarah's vision loss. I think that mainly this is for two reasons:

1.) I am her primary care giver. With her only having limited vision it means, for now, that I have a child who needs me a lot more than most other 9 year old children. She needs me to guide her in public. She needs me to help her do certain chores. She needs me to help her learn to live a new life as a visually impared person. This in and of itself is a huge adjustment. Add 3 other kids to that, and it makes for one stressed out mama. 

2.) For the last 14 months I have been dealing with life in a constant state of an adrenaline rush. An emergency here - an emergency there - it never really let up. Even in all of that though, there was always the hope that Sarah's vision would return to near perfect levels. That is what our family goal was, Sarah's goal was, and her medical team's goals were. When Sarah's vision deteriorated right before my eyes the week we were in New York, and when I knew that it wasn't going to come back - I lost all hope. Most of her doctors lost hope too.  I could see it in their eyes and hear it in their voices as one by one they all told us the same thing: damage has been done and there is nothing that can be done to reverse it.

That was when I knew it was real. When doctors start stop talking about recovering vision and begin talking about salvaging what is left you know that you are in a whole other level of the disease. I did not realize how much hope was carrying me all of these months until it was gone.

I keep telling myself, sometimes over and over again many times throughout the day that I am lucky. That things could be worse. But sometimes it is really hard for me not to dwell in those negative spaces that reside in my heart as I am a pessimist by nature. It is hard for me to consciously be thankful for my situation, but I am trying to get better about doing so because life could be so much worse.  Sarah could be in a wheelchair right now. She could be completely blind. She could lose all of her bladder function. She could be dead. That is what NMO could do to her, and what it has done to many besides her. So, I need to be thankful for today and thankful for what I do have.

We all have our crosses to bare. I am not unique in that way, and I need to stop acting like I am.