I can feel each second baring down on me holding my heart in a vice that I cannot seem to escape from. Sarah feels it too. Tick tock tick tock. The seconds go by, each one bringing us closer to our 10:45 appointment with the ophthalmologist tomorrow morning. The weight on my chest is making it hard for me to breath. Each inhalation and exhalation is felt. I know that Sarah feels it too.
Last night as I was tucking her in bed I promised her that I would not ask her how her eyes were doing today. Not once. This will be hard for me to keep, but I will do it anyway because I know that she needs the respite. She told me that she would tell me if her vision gets any worse, but I do not think that this is true. She is scared, and I know that. She mentioned to me that when she closes her left eye she can see almost nothing out of her right eye. Everything is very blurry. Her left eye is faring a bit better. She can see out of that eye, but things are still blurry at a distance. The black dots obscure her vision in both eyes. I thanked her for offering me that information without me asking. I told her that I want more than anything to be able to understand what she is seeing and experiencing because I want to know how to help her.
Bob came home earlier than normal last night, and was able to tuck Sarah into bed as well. When I talked to him a bit later on in the evening about everything going with her and updating him on the days events he mentioned that she was talking about fears no child should have to talk about. Things like needles and iv's, the pain of medication, and the fear of being admitted to the hospital. I know that her talking this way hurts his heart. It hurts mine too. I am grateful that she is being more vocal about her desires to not want to go to the hospital. The last 4 times she was hospitalized she seemed to give up the fight, and resigned herself that she had no power over what was happening to her. I am thankful to know her thoughts and desires. It will help Bob and I make some of the decisions that need to be made on her behalf.
I guess in a way, the signs are obvious that she is struggling. The boys even notice it. They can tell in the way that she holds the cards in her hands when we played Uno the last couple of days. They can tell by the way that she needs to sit so close to the TV when I let the kids watch a movie with their Papa last night. They can tell in the way she needed to play in the shade at the park yesterday because something about the sunshine makes her have less visibility. They can tell with how grouchy she is.
I, too, see the signs. The grouchiness is definitely a for sure sign. She has displayed this rage the last 2 or 3 times before being hospitalized. She gets very upset and mad at everyone for everything. I know better than to try correct her attitude. As long as she is not physically hurting anyone (and she is not) and is not being verbally abusive to anyone (she is not) then I let it go. Her rage is how her 9 year old mind and body are responding to the fear, uncertainty, confusion, hurt, and anger she is feeling. I feel it too, and I don't even have the medical issues she has. I cannot even fathom what she must be going through. There are other signs too. Being at the library the other day, and her not being able to see the computer screen while locating a book she wanted to check out. Needing extra help yesterday and days prior with her math and spelling homework.
The boys and I talked for a while couple of nights ago after the girls had gone to bed about Sarah's MS. It was the first time they really opened up to me with their thoughts about everything going on. I told them that it was okay to have a wide range of thoughts and emotions. I told them that even though Sarah was the one who carries this disease in her body, we are family, and therefore this disease affects us all. They wanted to know if Sarah was going to have to live with Bob and I forever if she loses her vision or shows any other signs of having MS? They wanted to know that if she did live with us what would happen to her when we died? They wanted to know if Sarah loses her vision would she be able to have a seeing eye dog help her to live her life? We talked about how if Sarah's vision keeps deteriorating that she will most likely never see the face of the person she chooses to marry (should she choose to even marry). If she chooses to have children, she will never see the faces of her sons and daughters. Josh hung his head low, and said, "Mom, why is this happening to us? Why is this happening to Sarah?". I responded in the only way that I could think of, and I told him that it was happening to us because we were strong enough to handle it. Because even though it was hard, sometimes really hard, we would thrive despite the odds of MS. Andy chimed in that we are close family who takes care of one another. He noted that not every family has that, and this is why the Universe chose Sarah to carry this disease. I agreed with Andy, and told him that Sarah will be a beacon of light for so many by her grace and beauty. I also explained to the boys that just because a person is blind doesn't mean they cannot see and just because a person has vision in both eyes doesn't mean they really see. Sight, to me, is more than what meets the eye. It is important for my kids to understand that. How many of us pass through our lives with vision in our eyes, but yet fail to see what is around and before us? I live my life blindly more often that I can to admit. I bet you do too.
In about 24 hours we will be in the waiting room of the doctor's office waiting to find out Sarah's fate. Tick, Tock, Tick, Tock....
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