Really...it will be alright.

Even though I have my days when everything I hear is bad news, worrisome news, stressful news or no news, I do believe this...

At times, it's really hard to believe that things will ever be anything but chaos but I know better than believe that kind of doom and gloom.  Things will be better someday, just not this day. 

I think part of why things are so tumultuous and overwhelming right now is because in so many areas, the kids' care has been lacking.  I guess a lot of that is because I haven't been a very good advocate for my kids in the past.  Shwachman Diamond is such a rare syndrome that historically, it's been hard to find doctors who knew about the disease let alone understood how it progressed so I only focused my attention on the basics and let some of the other 'weird' things slide because I really had no idea where to turn.  Now that we have specialists who are becoming well trained in the area of SDS, I can see that so many things are not normal.

Last Fall when we met our Hematologist in Seattle I sat there dumbfounded for three hours as she explained all the abnormal things going on with the kids and that was just from a physical exam...even before any blood work was done.  So, now it's catch up.  We need to have all the testing done that should have been done as baseline stuff when they were first diagnosed 11 years ago.  That explains part of the craziness.

The other part of the craziness is simply because SDS is a progressive kind of thing.  As the bone marrow becomes less and less effective in producing cells, you get more and more problems and that's where we're at.

This week it will be easy to freak out but I am holding strong to this mantra that some distant day in the future, the questions will find their answers and whether in this life or the next, everything is going to be okay.