Can I let this experience just be?

That's a line from an article I stumbled upon tonight written by Ezra Bayda, "Can I let this experience just be?...  When your mind is reeling in confusion, breathe deeply into the center of your chest.  Connecting to the core of your being this way extends loving kindness to yourself even when there's none in sight."  A timely message for a difficult week. 

I have been flattened this week by criticism about taking the kids to Seattle.  They don't think I am being logical, I've lost my mind, I'm traumatizing the kids.  It's maddening and seriously, I want to close the blinds, lock the door, turn out the lights and ignore the world and speak to no one!   I asked the doctor over and over if there was any way we could stay here to do it but the answer is no.  I know we are doing the right thing but I can't stand the critics.  It has put me in a real place of confusion that's for sure. 

The other difficult part to the week is that the kids are not dumb as to what is going on.  In August, the doctor used no discretion in discussing what she was seeing in their marrow from last year and other problems brewing.  It use to be, when they were younger, that they didn't have to know anything going on with them and they were not computer savvy so it stayed that way.  It's almost impossible now.  Information is just a click away. 

Tonight, Spencer came home from his friend's and the first words out his mouth were "When are you going to tell me what Mitochondrial disease is?"  I gave them the gentle version of what it is, a lack of energy in the cells, some general terms.  Shelbie has already looked up a lot of information about it and chimed in with some less than helpful thoughts which started a tumbling stream of tears from Sam and frustration from Spencer.  I don't know anymore how to protect them, shelter them from scary things.  It's really hard and sometimes I feel like there is no one on the face of the earth who understands or who can help me.  It would really be helpful if I had a supportive spouse. It's hard facing all this alone.  Ya, they have a dad but as far as his concern for me, he is not respectful or kind and thinks I am always overreacting even though I am only doing what the doctors recommend.  He likes to pretend that nothing is wrong and gets very angry when the kids know anything about their disease and problems.  He tells them everything is fine.  I tried that until the kids got older and wiser.  Tonight, Spencer said, "Don't tell us there is nothing to worry about and everything is okay when we already know it's not because when we hear in 3 weeks that one of us has leukemia, I will be really mad, that isn't exactly fine is it?" Ughhhh, What do you say to that?  How much should they know?  If I tell them too much, then they get depressed and scared but if I don't tell them enough they get mad and think I can't be trusted to be honest with them.  I seriously did not plan on the logistics of chronic illness being so tricky!  I kind of hate that part of it.

Well, we ended the conversation with the fact that God knows exactly the hour and minute that we will return home to him.  Whether or not we have a life threatening disease makes no difference.  We will live as long as we need to in order to learn everything that is necessary.  That seemed to calm them down.  Things this month will be really hard and Seattle will be lonely and difficult for us all.

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