Wednesday, May 6, 2015

Even though

Even though I have kept a little more distance between me and this disease, it doesn't mean the kids have been doing all that great.

We are still dealing with the usual strange symptoms like increased headaches, shortness of breath and other oddities.  In our usual fashion, we just try to ignore it and hope it passes.

It gets to the point where it's all just too much.  I think I hit that wall about two months ago.  Maybe it's good that I am juggling multiple problems at once so I don't dwell for too long on the things that hurt the most.

Even though, we've been ignoring a lot of what is going on health wise, I still get frustrated at the way this disease messes with your head.  For a little while, things have seemed pretty normal and I found myself wondering again...why this year has felt so hard.  Then I remember that it's been a crazy roller coaster of a year so far!  

One day, the news is so grim, the next we are managing and even moving on.  It doesn't even seem possible when I think about where we have been and where we might end up.

There are so many sick kids right now with both Shwachman Diamond and Dyskeratosis Congenita.  So many DC kids who have had bone marrow transplants, so many getting ready for transplant.  It's hard not to wonder when it will be our turn.  When the other shoe will drop.  I know I shouldn't go there is what it is.

I guess all this is coming about because today...we see the pulmonologist.  Will Shelbie have Pulmonary Arteriovenous Malformations?  It's anybody's guess.


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