When Her Spirit Breaks

Elizabeth's welcome home card for Sarah.

For almost 10 months now Sarah has been a trooper. She has quietly and silently endured what most of us adults would have a hard time baring - all with a poise beyond her years. I knew that eventually this disease would break her spirit and we have come to that point.

I think what did it in for her was the fact that on Thursday night her eyes were feeling fine. She was doing better than she had been for a long time, and although there is permanent vision loss behind her left eye and most likely her right eye, she was feeling really good about what she had left to work with. She, like the rest of us, were starting to dream about the future. A future without hospital stays every other month or medicines beyond her daily does of Imuran. She was beginning to breathe easy. We all were.

With the blink of an eye all of that changed for her on Friday morning when she woke up to black spots and vision loss again. Normally, this disease will give her some warning of its ever present grip on her vision. Each day she will notice a little change that will accumulate over the course of a week or two where her vision will deteriorate to the point of needing to be hospitalized. This time it didn't happen that way. This time everything was good one day, and them BOOM! The next day was bad enough to be hospitalized. That shook her to her core. She has known from the get go that each day brings different vision acuity, but never before has it changed so drastically in such a short period of time.

It also didn't help that child visitors (her siblings included - although we did sneak them in twice for a short period of time) weren't allowed because it is still considered cold and flu season at the hospital. Normally, her best friend will try and make the trip up to the hospital to see her. Without any visitors her spirits started to sag on Saturday evening, by Sunday when I took over for Bob on hospital duty, her spirit was in the dumps. She whimpered most of the day that she wanted to go home and be with the kids. Each passing hour seemed like a day to her, and she would alternate between crying and being angry.

Monday came and she had an appointment with Dr. Locastro. We had to a wait a while for him as he squeezed us in to his schedule so that he could see her. I thought she was going to have a full blown outburst right there in his office as we waited our turn. She was whimpering again that she could not "do this" anymore. When I asked her what she meant by that she told me that she could not do any of it anymore - the hospital stays, the waiting for doctors, the doctors appointments, the medicine, the vision loss, the weight gain, the being tired, and most importantly she couldn't handle being different anymore. I let her cry and just listened to her all the while I wanted to cry myself.

Flowers from Uncle Mike, Aunt Emily, Michael, and Lucy

By Tuesday evening the sh&# hit the fan. The emotional thunderstorm was building up all day, but when some friends came over and were playing soccer outside, the straw that broke the camel's back was when she could not see the soccer ball rolling around on the ground. Having these kind of deficits and differences are a constant reminder of the one thing she does not want to know: she is different now.  She was in her room crying curled up in a ball for about two hours just saying over and over again that she could not do this anymore. She would alternate between yelling at the top of her lungs and crying that she was tired of eating a special diet, tired of being different, tired of everything. She hated this disease and she wanted it gone from her body. I could do nothing but listen to the sounds of her spirit breaking. I just let her vent and listened to all that she had to say. It was one of the hardest nights of my life. How do you comfort your child, and tell her that all will be well when you cannot guarantee that? How can you tell her that life will get easier when you are not sure that that is the case? How can you promise her that all of her dietary changes will be worth it when you aren't sure that they are? How can you soothe her tales of kids being mean to her or singling her out for being different when you know that you cannot promise kindness from everyone?

She did end up calming down after I explained to her that it was okay to have sad days and mad days, but that if she lived her life in a constant state of sadness or madness that NMO would win. She is the only one who could control her emotions and she is the only one who can determine her outlook in life. I let her know that more than half of her battle is going to be based on her outlook on this disease. I also explained to her that she will be able to do just about everything else everyone else can do, but she will have to go about it a bit differently. The end result will still be the same. One of her biggest concerns is not being able to play soccer. She loves to play and it is one of the only places where she feels normal. I told her about a skier that I had read about earlier in the morning  - a blind skier to be exact. I explained how the woman was a part of this years Paralympics and that she was able to accomplish all of her dreams albeit a bit differently than she originally thought. This, too, seemed to help calm her down. I cannot imagine what it must be like to be 9 years old and to be going through what Sarah is.

It was one thing when this disease threatened to break my spirit. It is a whole other issue when this disease breaks my daughter's spirit. To see her so broken was a hurt I had never felt before. I could not make this better. I could not give her a kiss and all would be well. I could not promise her a future free from hardship and struggles. Free of hurt and uncertainty. Physical hurt in a child is one thing. Emotional hurt is another thing entirely. Each breaks a parents heart equally.

The anger, the tears, the lashing out, I know that all of that is not meant for me or Bob or the kids. Those things are coming out at us because we are who she loves the most. It is we who she feels safest with to be herself and to show us her fears. So, for now, we will take it all in stride. Bob and I have decided to locate a therapist to help us learn to live successfully with a disease such as this. This thing is bigger than us and it affects each and everyone of us. I think that we all need the professional help in order to be able to make the most of this life we have been given.

Sarah is going to spend some time with my sister this weekend. I am grateful to have such an awesome sister. I am thankful that Sarah loves her aunt as much as she does, and that she has a soft place to land when being here becomes too much. I hope that for a couple of days anyway she can forget all of her troubles and just have fun.

Her vision is not getting any better. In fact, her eye sight was worse on Monday in Dr. Locastro's office than it was on Friday when she went into the hospital. I am not sure what to make of that. I guess, right now, I am not sure what to make of anything.

I am thankful that spring is right around the corner. We can focus on being outside again, gardening, and traveling. If we can only hold on for a bit longer I think everything will be okay. I hope...

Some days this is all we have. (Make by Elizabeth)