Change

So, how do you like the new banner?  To me, it feels like a breath of fresh air.  Last year was a year of chaos and stumbling from one crisis to another.  By the time December came, I wasn't sure I was going to make it to this year without a new, white, slim fitting jacket with extra long sleeves and silver buckles!  Yes, I felt like I was going crazy!  Most days, I am still crazy, some things will never change but I feel like I have a little more breathing room. 

Life is hard.  Life is harder with Shwachman Diamond Syndrome and Mitochondrial Disease and Secondary Immune Deficiency.  Really, when I think about it, nothing has changed physically from December to January.  We are still preparing for Shelbie's infusion this week. For the last several days, she has had inflammed eyes off and on, sore throat, cough and some GI issues but it has all somehow melded more seamlessly into the day.  Sadly, it has become like a weather report we hardly pay attention to.  That sounds rude doesn't it?  Sounds like I don't care.  I'm sure there are times when my kids feel that way too.  I do care, I care too much and that's why I am losing my mind. 

Every problem I have faced in life had an exit strategy.  With enough planning, working, organizing, finessing, sweat, blood and tears, I was able to find a way out from under the crushing force of life.  This whole world of chronic illness is totally out of my control!  I am still trying to figure out how to live with it, watch it all go down.  It's frustrating but then again, that isn't breaking news.

So, here's to another year...another year of plasma transfusions, daily nausea, fatigue, infections and whatever else decides to sneak up on us from behind.