Sarah

We are coming up on the 1 year anniversary of Sarah's diagnosis. May 18th to be exact. I find myself tearing up at random times, and feel the weight and enormity of the whole situation weighing down on my heart. She had trouble hunting for Easter eggs, and quietly pulled me aside after the first one (my spoiled kids got to partake in 3 Easter egg hunts on Sunday) to tell me that she had only collected a couple of eggs because she couldn't see them. I walked with her on her second hunt to try and help her locate as many we could, but all of the other kids followed us and she was embarrassed at having my help so she went her own way. On our 3rd hunt she seemed to be doing a bit better, but she still needed our help in finding obvious (to those of us with good vision) eggs in plain sight. It is times like these when her disease breaks my heart.

We went camping on Monday and she fared no better. (Our camera ran out of batteries, so I have no pictures. Boo!) Our campsite ran along a river, but in order to get to it you had to walk through some brush and trees. She kept getting caught in the pricker bushes because she could not see them. She walked into a bush while we were walking to the van to get something out of it because it did not yet have its leaves and blended into the background.  The boys were so gracious with her, and I found them quietly leading her to the river holding back a pricker branch here or pushing aside a fallen twig there. They would warn her when the ground would become uneven so that she would not trip. I spotted a frog that I tried to point out to her when we were sharing some time alone and she could not see it. It was a miracle that the frog was so patient because the only way I could get her to see the frog was to take her hand and have her touch it. Once she touched it her eyes focused in on the animal and she was able to see it.

Her vision seems good  at home because this is familiar.  She does okay riding her bike along familiar routes and has a couple of girlfriends that she plays with and does not seem to have trouble seeing at their homes. Put her in new surrounding and the damage to her eyes becomes apparent to those who know her best. Her disease is a source of embarrassment for her, and I have witnessed her lying to people that she can see something that someone is trying to point out to her when she cannot. I know this because I know her, and I have learned to watch her like a hawk for the discreet signs that something is amiss.

As of yesterday, she began to have trouble again with blurriness. Bob and I thought this was because of the excitement of Easter followed by camping and not getting enough sleep. I asked her this afternoon how she felt. She was quiet for a moment, and said that she did not feel any better, but did not feel any worse either.

You can mark my words that she will be having another relapse soon. I have been through this too many times and have seen the signs and symptoms too much. I know that this sounds callous, but it is the truth. I worry because we have a trip planned to NYC in just a couple of weeks. I want that trip to be fun and filled with laughter. I want her to be able to see the sights and enjoy all NY has to offer.

I guess more than being able to enjoy a family vacation I want for her to have some stability in her vision. For this disease to just give her some peace. Even if only for a little while.