A Scare For Sarah

I used to think that all blind people had the same amount of blindness. I had no idea that there were different "levels" of being blind.  The government defines being legally blind as anyone with vision worse than 20/200. In case you were wondering the picture below is an example of what that looks like.

What 20/200 vision looks like. 

 In the beginning of our journey when Sarah would get to this point during a relapse she would be hospitalized. She would receive treatment and her vision would go back to 20/20 in one eye and maybe 20/40 in her other eye. As time when on she would only regain enough vision to have her best be at 20/60 or 20/80. And then as more time went on it got to the point where 20/80 and 20/100 was as good as it was gonna get. That was a hard time for us, but Sarah persevered and found a way to maintain her mobility and independence.

As more time went on we no longer took her to the hospital when her vision would reach 20/200, but would instead wait until it was 20/400. The reason that this became the case was because her vision was at 20/200. That became her new normal. It was only when her vision deteriorated to 20/400 did we know that she was relapsing. (The above picture shows what 20/400 vision looks like.)

20/800 vision

Finally, in July of 2014 Sarah's vision did not come back after her normal hospitalization. She was at around 20/800 and that was to become her new normal. As time went on we adjusted to this. We moved to New Mexico and we thought that the sun and the good weather would help restore some of that lost vitamin D Sarah was missing out on by living in Ohio. With 20/800 vision Sarah was still able to navigate decently around our new house. She was still able to make out enough detail that she could be independent. She would have her bad days for sure, but for the most part she would only bump into things some of the time. She was still able to get around without a cane (for the most part). Looking at these pictures I have no idea how she was able to get around, but she did.

The right hand side is 20/800 vision. The left hand side is what you and I see. 

The whole time Sarah was going through her relapses she would complain about having these black dots in her vision. She would always know when she was relapsing because the black dots would increase and her vision would get worse. The picture above shows what that looked like to her. So imagine this combined with the 20/200, 20/400, and then 20/800 pictures. Our girl is truly amazing, isn't she?

In January of last year, right before we left to come back to Ohio, Sarah went from 20/800 vision to what I would call shadow only vision. (I could not find any pictures of it on google images.) The dots are now a part of her life and look like the picture above - only they are all black and not colorful. She most likely would run into you right now if you were standing in front of her unless the lighting in the room was just so. 

Still Sarah has persevered. She has memorized our entire house and can get around without her cane. She is doing a great job in learning to adept the life with vision like in the picture above. She is gaining confidence with her cane so that when we go out in public she sometimes will walk on her own. 

Sarah's biggest fear now (and has been for a while) is that her world will go entirely black. I don't know the percentages, but I venture to say that most people who are legally blind have one of the above vision acuities. There are some who see nothing though. No light. No shadows. No color. Only blackness. To say that Sarah is actually petrified of this would be an accurate statement. If I am being completely honest with myself I would say that I am petrified of this too. How do you know when it is nighttime? How do you know when it is day? How do you not lose your mind with everything being black all of the time? 

On Friday night, Sarah experienced this blackness for about 15 minutes and it shook us both to our core. I was putting Sarah to bed. I was getting ready to turn off her big bedroom light when she asked if I would allow her to keep her desk lamp on as well as her closet light. I told her that was fine and turned off her main light while turning on her desk lamp, a stand up lamp, and also her closet light. I noticed she was blinking very weirdly. Actually, she was blinking the way she did on May 18th, 2013 in the hospital the night she was diagnosed. (It is a look I will have etched in my memory for as long as I live.) Her eyes filled with tears as she said told me everything was pitch black. She asked me if the lights were on and when I told her yes she told me that she could not see them. She could not tell that any lights were on at all. She was completely in the dark. I then turned on her big bedroom light as well and she could not tell that I had done so. I felt utterly helpless. After trying several things (closing her eyes, laying down, etc..) something clicked in her eyes and she was able to tell that the lights were on, but it rocked her to her core. She was crying and I held her in my arms feeling a hopelessness I had not felt in a long time. 

There is nothing in this world that I can think of that is worse than watching your child hurt and not knowing why and knowing there is absolutely nothing you can do in this whole wide world to help her. It is hands down the worst feeling I have ever felt. It is a soul crushing, heart breaking, and utterly helpless terribleness that I cannot describe. 

I had Sarah come lay down with me and snuggled with her that night. Bob was kind enough to sleep in Sarah's bed. I needed Sarah next to me that night as much as she needed me next to her. 

There was no rhyme or reason for this brief blackout. And though it lasted only 15 minutes it was very real and very, very scary because what I can tell you is that if the past is predictive of the future then that black out was not the last one Sarah will have. In fact, it is most likely a forewarning of her future. 

Life becomes very clear to me when Sarah has issues. Nothing else is important, but my kids and my husband and being together. For a moment or two life comes into laser sharp focus. All of the outside things that we have gymnastics, soccer, school,  etc...melt away. All that matters is packing in as many memories as I possibly can in the event that Sarah's world goes dark permanently.

  On Saturday, we took the kids to Rock City (I will post pictures later) and enjoyed the day as a family. Nothing else mattered to me, but being with my husband and kids. We had other obligations that weekend, but I attended only part of 1 of them. It was important to me to be with my family this past weekend. It was important to go some place new and enjoy another experience and have Sarah be able to see the outlines of the rocks and to enjoy feeling the sun on her face with the kids, Bob and I. 

Because this is what her world may someday look like:

Even today, I am still shaken by the events of Friday night. It has been a while since we have had any medical scares. Oh, how I could live the rest of my live without a medical scare...that would be glorious. 

Sarah has an MRI scheduled for when we go back to Ohio in a couple of weeks. She also has an appointment at the Cleveland Clinic to see her neurologist and also an ophthalmology appointment with our beloved Dr. Locastro. I hope that everything comes back with good news on Sarah's MRI, but after Friday night's incident I am afraid that it won't. And I am not sure how I will be able to handle that. 

In times like these I struggle to keep it together. I see my little girl and know that she suffers and know that she will continue to suffer and I cannot wrap my head around that. It doesn't make sense. The fact that Sarah's illness strikes when it wants to with no warning only adds to the hardship.