I gotta be honest...

I am looking towards the new year with a hint of trepidation and worry.  I know, it should be a time of hope and new beginnings.  I guess this year has just about drowned me and the effort it has taken to stay above the turmoil has been great. 

I am a little scared about what we will find in the coming year.  Yesterday, Spencer came home complaining that his arms were numb all day.  I just shake my head anymore and hope it goes away because lately, our doctors have been less than helpful.  I don't know what to do about numb arms.   Shelbie continues to yawn and feel nauseated all day, every day.  She is still weak and exhausted.  Sam is hanging in there, thank goodness! 

It is just so hard to watch my kids suffer so much at times.  It is often more than I think I can bear.  Sometimes, running away seems like a great idea but I would probably get no further than the mailbox and turn back.  They can't run away from this disease so I shouldn't be able to either.  Everytime they open their mouth to proclaim a new symptom, a body part not working properly, a part of me dies. I can't imagine another year of this, always wondering if the problem is going to go away or if we should prepare for the worst, when to see a doctor and when to wait it out.  It's a crazy-making process, one I'm still not use to even after all these years.