Bad Day

I am having a bad day, so for the first time in about two weeks this is a post written today, about today.  I will come back to the last of Cairns when I get a chance.  I was having an OK day but then when I got to work, I discovered that one of my little clients died last night in his sleep.  Interestingly, to me, I am OK with his dying.  He (for want of a better way to put it) needed to.  He was happy and interactive and a bright little boy but he fought for each breath and couldn't cry without choking on his increased saliva.  I am more sad for his parents.  They have fought for him from the beginning and only now face the long wait to see him again. 

I wish that life followed it's pathway the way that it is supposed to.  I wish that the childhood killers of SMA and DMD just didn't exist.  I wish that the myriad of other rare diseases didn't either.  It saddens me that I am incapable of stopping the juggernaut that the disease becomes.  The best I can do is to soften it's blow and help to alleviate the pain.  The most I can do is hold their parent's hand and walk beside them.  Just yesterday I was talking to one of our new Physios.  I said that;

"It is a fact of life that most of our clients have life limiting conditions, but the magic is making those lives as functional and as fulfilling as possible"

Yesterday I believed that.  Today I am struggling again.  It is magic to make these kids more functional.  It is magic to help their parents and their siblings, before, during and after their death.  It is magic to be a part of their lives and to help them in the toughest stretch.  It is magic but it sucks.  It is magic but it is tiring. 

I am sending peaceful thoughts to his family tonight.  I hope they find comfort in this time.  I hope that they know that there will be happiness again.  I hope that they find hope again.  I am sending them love