Misunderstandings
This has been a quiet week as far as any major problems. We have the same old issues hanging around but at least it's crappy stuff we are well acquainted with. I have been trying to keep my distance from Shwachman Diamond Syndrome and Mitochondrial Disease this week. They just frustrate me so much I just can't stand to give them anymore attention than they absolutely need.
I have been keeping up with the support groups I am in on Facebook and Yahoo Groups. It seems whenever I am struggling with something, someone else is having the same problem somewhere else in the world. That is comforting and I don't feel quite so isolated, or maybe 'crazy' is a better word. I know that there are probably numerous people who think I make all this up. They probably don't get it and quite frankly, they probably never will. "They don't look sick." Is one of my favorite sentences of ignorance. If we walked around everyday the way we felt, we would have a sad, sad life. No one would want to come near us, it would be so depressing so we go alone, trying to protect everyone else from the reality of our life.
I have thought about abandoning my blogs just for this reason. This was suppose to be a place for me to journal about life with three chronically ill kids. You don't see situations like this everyday. I don't have a spouse or anyone significant to share these burdens with and sometimes dragging my fears and worry around all day, everyday gets to be too much. It's just me and my thoughts which I mostly keep to myself except when I dare write them here. Sometimes, writing from my perspective, from my heart, puts me on the hotseat. People are able to form all sorts of opinions and judgements which though well meant I'm sure, are not easy to hear. Misunderstandings emerge all the time. Sometimes, that just adds more problems to the mix I don't have the energy to address the emotions of everyone else around me let alone my kids.
I guess it's just the nature of chronic problems. We are really good at dealing with acute problems, things with an end in sight. We aren't good at the monotony of the day to day struggles and fitting into this world is a big one. It's like a marathon that you were thrown into on a whim. There is no time to train, to build endurance and stamina. The starting gun goes off and if you don't start running, you will surely get trampled. I guess that's where all this rambling is going. I'm just tired of the process and wish I had a little more experience in marathons under my belt. I don't like being criticized about my form, my stride and my thoughts on running marathons. It just gets old because really, if I had any say in the matter, I would have dropped out a long time ago, in fact I did try to drop out but this is where I am suppose to be, stumbling or not.
This week, a few people have suggested that things aren't as bad as I make them out to be. One person eluded to the fact that they think my kids just have a sensitivity to some foods and if I would get on top of that, they would get better. Apparently, it's that simple because that was the answer for them and their chronic fatigue. I wasted so much time this week just in second guessing myself as a mom to these kids. It's been sort of frustrating.
Anyways, despite these communication setbacks with people who I really shouldn't be giving any of my time or emotion to anyways, I am glad for the little breathing room and stability. I should find out this week when the kids will have their bone marrow biopsies and a different way to tackle this adenovirus of Shelbie's.
I have been keeping up with the support groups I am in on Facebook and Yahoo Groups. It seems whenever I am struggling with something, someone else is having the same problem somewhere else in the world. That is comforting and I don't feel quite so isolated, or maybe 'crazy' is a better word. I know that there are probably numerous people who think I make all this up. They probably don't get it and quite frankly, they probably never will. "They don't look sick." Is one of my favorite sentences of ignorance. If we walked around everyday the way we felt, we would have a sad, sad life. No one would want to come near us, it would be so depressing so we go alone, trying to protect everyone else from the reality of our life.
I have thought about abandoning my blogs just for this reason. This was suppose to be a place for me to journal about life with three chronically ill kids. You don't see situations like this everyday. I don't have a spouse or anyone significant to share these burdens with and sometimes dragging my fears and worry around all day, everyday gets to be too much. It's just me and my thoughts which I mostly keep to myself except when I dare write them here. Sometimes, writing from my perspective, from my heart, puts me on the hotseat. People are able to form all sorts of opinions and judgements which though well meant I'm sure, are not easy to hear. Misunderstandings emerge all the time. Sometimes, that just adds more problems to the mix I don't have the energy to address the emotions of everyone else around me let alone my kids.
I guess it's just the nature of chronic problems. We are really good at dealing with acute problems, things with an end in sight. We aren't good at the monotony of the day to day struggles and fitting into this world is a big one. It's like a marathon that you were thrown into on a whim. There is no time to train, to build endurance and stamina. The starting gun goes off and if you don't start running, you will surely get trampled. I guess that's where all this rambling is going. I'm just tired of the process and wish I had a little more experience in marathons under my belt. I don't like being criticized about my form, my stride and my thoughts on running marathons. It just gets old because really, if I had any say in the matter, I would have dropped out a long time ago, in fact I did try to drop out but this is where I am suppose to be, stumbling or not.
This week, a few people have suggested that things aren't as bad as I make them out to be. One person eluded to the fact that they think my kids just have a sensitivity to some foods and if I would get on top of that, they would get better. Apparently, it's that simple because that was the answer for them and their chronic fatigue. I wasted so much time this week just in second guessing myself as a mom to these kids. It's been sort of frustrating.
Anyways, despite these communication setbacks with people who I really shouldn't be giving any of my time or emotion to anyways, I am glad for the little breathing room and stability. I should find out this week when the kids will have their bone marrow biopsies and a different way to tackle this adenovirus of Shelbie's.
I love you Kathy. I am at a loss for words.
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