Small World

I can't even describe how nice it was to be away from here but I learned alot about my life while I was gone.  I learned just how small my world is.   I don't know if I can explain this well enough for anyone else to understand but here goes. 
     I am reading a book right now called Room by Emma Donoghue.  It's about a girl who has been abducted and hidden away in a shed for 7 years.  9 months After an incident with her abductor, she has a baby who now lives with her hidden away in this shed that has no windows and a locked door.  It measures 11' square but he provides her with a flushing toilet,fridge,tv, table, bed and wardrobe.  He drops off food every now and again but only the essentials.  The story is how she tries to raise this boy creating a world that seems normal for him so he isn't scared and doesn't feel like he is being held captive.  The boy has no idea that any world exists beyond their tiny world in the room. 
     Sometimes, I feel like my world is like this, small and foreign.  Sometimes, I feel like I too am trying to live in a world that is not normal but I pretend it is.  If I don't know what I'm missing then it's really okay, I find my groove and there I stay.  I think my kids are totally normal until I see that all the pain and fatigue they experience is not what everyone else outside our world experiences.  Pain, nausea, fatigue are not things anyone else has to deal with everyday but it's our normal.  Activities that you don't even think about like shopping, working, eating, playing can become a real problem for my kids. 
    When I escape this world, like I did this past week, I think of how much I have isolated myself from the world.  Maybe it's all the sickness and disease we have no choice but to deal with that has made us transparent, even invisible at times.  I guess, it really does feel like we are being held captive when we see what a 'normal' life is like.   We become too big for the world, people get tired of hearing about all the problems that never go away and so I retreat to where it's safe in our little 11' x 11' room that we have become so familiar and comfortable with. 
     Tonight, the kids had to go to their dad's for the start of the New Year's holiday and here I am sitting home, the house is dead quiet, and it's a little lonely.  I think about all the things I haven't accomplished the past few years and talent I've wasted perhaps.  I think about the life I don't have when my kids are gone.  They are my life.   I worry that I need to do something to increase the size of my world but what...what would that be?
     So, I guess while I have some quiet time, I will try to figure some things out, contemplate a future that feels like it already has a ceiling on what I can or can't do.  There has to be more.  I had this talk with Shelbie, she feels the impact of her small world as well.  It's just one side effect of chronic illness that I hadn't anticipated or fully understood until now.  It's a little hard to think it through and I fear I am not doing as good a job as I did when the kids were younger and could hide their disease from them.  I never wanted SDS to define their life but in so many ways, it was sneaky and has taken so much from them already.


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