The kids are at a dentist appointment this morning. Bob, the appointment taker, is with them. I am trying to enjoy a morning to myself, but am having a hard time. I am so sorry that my blog has seemed so doom and gloom lately. How unfun is that to read everyday? I know that I would get so annoyed/bored by reading a woman who constantly posted things about how the sky is falling...you might as well call me Chicken Little. Blah!!!!
The thing is, this is the only place where I go to vent and write about my hopes and fears. I rarely talk about this stuff with actual people because I don't want to get into it. At least here I can control the "conversation" and if something is too raw I don't have to think about it or answer a question about it. I can just ignore the issue altogether until I am ready to address it. I appreciate my friends and family asking about how everything is going, and I know that they do this out of love, care and concern for me and my family. I don't mind them asking, but mostly I will answer with something vague like 'fine' or 'as to be expected' because I think about and live this stuff every waking minute. When I am with my friends and family, that is my escape from my life, and I just want to pretend for a while that my life is normal and all is well. Does that make any sense, or do I just sound like a crazy person?
I think that until our appointment this coming Monday with the neurologist my blog will have a faint taste of sorrow wrapped among the words just because I cannot help that feeling from oozing out of me in this space. I will pick up my feet again. If this is NMO, I will refuse to back down from it, and I will fight it with all that I have. With MS, Sarah has a fighting chance to "beat" to the disease and keep it in remission. With NMO, there is no fighting chance. The disease will win. The only reason to fight it is to be able to say that we tried everything we could to beat it.
Yesterday ended up being both a good and a bad day. It was a good day because Bob worked a day shift and he surprised the kids and brought home a ton of stuff to make ice cream milkshakes. Even Sarah had one. Right now, although diet is a consideration, I am not going to be a food drill sergeant. I want Sarah to smile. I want to see her smile and to feel its warmth penetrate deep inside me. So, if a milkshake is what will do it once in a while, then a milkshake it is.
The bad part of the day was when Sarah started to cry out of the blue because she admitted to me that she can no longer see the images on the computer screen (19"), her Kindle screen, the boys TV (19"), and after a while even the big TV (49") starts to get too blurry. It makes her feel left out when I give the other 3 kids access to those privileges because she cannot partake in those types of things right now. I knew she had some trouble with these items, but did not realize that she had trouble with ALL of them. I felt like I had been punched in the stomach. It isn't like she has unfettered access to these things, but at least she knew that at any time, if she got permission she could access those things. It isn't like that for her anymore. She will tell you that she can see certain things because it embarrasses her that she cannot. But her actions speak louder than words, and I know when she can and cannot see something. We play cards a lot now, and Sarah told me yesterday that when we play Rummy sometimes she cannot see the numbers on the cards, but when that happens she just quickly counts the shapes on the card so that she can figure out what number it is. It is these kind of stories that leak out of her at random times that break my heart for her in a way that is completely indescribable to another person.
I try really hard to remember that we are the lucky ones because there are so many out there who have it worse. I try to not be angry and not to feel sorry for myself and for my family. I try to be thankful for all that we do have, and to remember that everyone has struggles and hardships. We are not unique in that area. These types of thoughts do help me to feel better for a while, but then something will happen and I will see Sarah struggle with something or one of my other children (like my sweet Josh) will come to me with sadness in his heart, and all of that thankfulness goes out the window.
I hope upon hope that her vision will be restored, but both her ophthalmologist and her new neurologist let Bob and I know that there is definitely some vision damage they were just not sure how much. My heart is starting to worry that what she has now is all that she will have, and that the medications she is on right now aren't going to restore anything, but are working to prevent further damage. MS or NMO - it doesn't really matter in terms of her vision - one of them has partially robbed her of the gift of sight.
We had two showings at the house on Sunday, and both families said 'no thanks' to our home because it doesn't have a basement and is on a corner lot. I am ready to pull the damn thing off the market. Yes, I would love a bigger home with a true dining room and a basement, but it isn't worth it to me anymore because having a bigger home means a bigger mortgage and bigger utility bills. I would rather stay in my home and use that money to take trips (which we are in the process of planning a couple of things) and create memories with my kids. We are comfortable now, and have the luxury of going places and doing things. I want to make sure that Sarah has the ability to see as many different things as possible just in case she should lose all of her vision. I would very much regret moving into a bigger home at the expense of creating memories with her and her siblings especially because we don't know what the future holds. Bob wanted to leave the house on the market until March when our contract expires with our current agent, but I am thinking after the conversation I had yesterday with Sarah about just how hard it is for her to see, that he may change his mind too. Then again, maybe not. We sometimes are on the opposite ends of the spectrum with things like this.
All I can do right now, is to take things day by day. We are still doing our school work (although we have changed up some of the the things we were doing) and are reading books up a storm. Right now, the kids and I are reading two books - The Baby-Sitter's Club (#9) and Where the Red Fern Grows. I am going to find a list of classic books and begin to read those to the kids. We read for at least a couple of hours each day - a chapter read here and there throughout our waking hours - and then again at night right before bed. I am having Elizabeth read to me everyday as well, and Sarah reads when she can see the words on the pages (which hasn't been too often lately). Once the weather breaks, and it is not so cold out we will venture outside for winter hikes. We are all eagerly awaiting the arrival of spring, so that we can spend an abundant amount of time out of doors.
I ordered a seed catalog because if we end of staying here I am turning my side lot into a huge garden. I am pretty excited about this venture, and the kids are too. It will be a good learning experience for us all.
Thank you for sticking with me during this messy part of my life. I cannot wait to get back to posting about ordinary days and fun times. I know they are right around the corner...
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