What is hope, exactly?

I've spent most of the past 2-1/2 years in a bubble.  A hope bubble.  It was popped last month and I haven't been sure what to do about it.  Then I started to question what hope even is and at what point it is appropriate and and what point it just becomes yet another device I use to get through my day.  Hearing the words : these drugs aren't working.  well, it threw me for a loop.  I always had those drugs to fall back on.  They were working.  This was it.  I just had to get Cole through the next couple years with no serious lung damage and I believed that it would all be fine. 

Next chapter, we join the thousand of other families plagued with this disease without a cure.  Yes, we are so much farther along than most of them....so much they would scoff at my comments.  Their loved ones barely made it out of diapers or grade school.  But this is where our journey starts, after the loss of so many. 

It doesn't stop hurting.  I thought somehow it would. 

The crawl is tomorrow.  Danny's anniversary of his death is tomorrow.  It's just bringing it all up.  People don't get how it feels.  They don't know that the crawl is so bittersweet for so many of us, we cry in the days leading up to it.  They don't get that a sister will be mourning her baby brothers death.  I am glad they don't, they wouldn't want to go.  It's still there though.  It's still always there.  Just send a prayer out to those that hurt.  They will feel it.