Life As She See's It Right Now

Back from our infusion this morning, and my girl is back in bed sleeping. She is so tired this time around, and I cannot help shake the feeling that this round of vision loss has broken her in a way that she will forever be changed.

It is time to start thinking about real life changes. Things like Braille and altering the life as we now know it so accommodate a child that can no longer see very well. Oh, how I hope in a couple of weeks I can write you a post about how well Sarah is doing and how much she can see, but I cannot even imagine that day right now.

Her Akron Children's neurologist stopped in while Sarah was getting her infusion and we talked about how steroids are no longer working. I told him that it seems pointless to keep on putting her through this treatment when it is futile. This go around is the 11th time she has been on a high dose of steroids. 11 times in 15 months. Something has to give.

Our doctor mentioned doing another spinal tap and an MRI. I agreed wholeheartedly. I know that her Cleveland Clinic neurologist wanted to wait for Sarah to come off of her steroids before doing either of those procedures for fear that the steroids would skew her results, but her Akron Children's neurologist seems to think that she may never come off of them, so why wait? I tend to agree with him.

There are so many things going on in my life that I had wanted to share with you. My garden, my weight loss, etc...but none of those things seem important right now. I hope there will come a day that I feel differently.

God, this life is so hard. I wish there was an opt out button sometimes. A button that will message up to God, and say, "Hey. You picked the wrong girl. I am not strong enough to do this anymore. I cannot carry the weight of this disease anymore. I cannot watch my daughter deteriorate anymore. I think you have me confused with someone else. Someone stronger, wiser, more able, more mentally capable. Someone with more fighting spirit." I am tired of fighting for a life that so many get to have every day. I am tired of trying to be normal and feel normal.

I wish I could go to the highest mountaintop and just scream my lungs out. Just scream until there is no sound left in my voice. I don't handle prolonged crisis very well, as you all are witnessing. I don't know how so many others with children that are sick without any hope for a cure can carry on. I have got to find a way to thrive even in these circumstances. I am just so tired of fighting....

This is what Sarah see's through her eyes:

(All images taken from google.com)

This is what Sarah is currently seeing out of her eyes. (This is 20/800 vision)

This is the same picture as above as you and I would see it 

This is 20/800 where there is better lighting. 

When her vision improves this is what it looks like to her. This is as good as it has been in the past 2 months out of her right eye.