What am I supposed to say?

We have some great neighbors here.  They know my kids really well, and they spend quite a bit of time over at all of their houses.  I don’t really talk much about what is going on with Hannah to anyone around here, except a couple of them.  They know her symptoms, they know the many different doctors appointments we go on, and they know that we are waiting for the skin biopsy results to give us, hopefully, a diagnosis so we can move forward.

All of them tell me that the doctors just need to figure out what is going on so they can get her well.  Or that “it will be something they can fix.”  Each time I hear this, my heart hurts because I really don’t know how to respond except with “I hope so.”  I don’t tell them about NPC or the seriousness of the lysosomal storage diseases that they are currently working Hannah up for. 

What am I suppose to say… I’m already having a difficult time even knowing that this could take her away from me in such a short time if it is what they think.   I’m exhausted, but I was just lying in bed a few minutes ago, just replying those comments in my mind.  Then I start thinking about the worst case scenario and then how do I tell people?  Then I get mad at myself for even thinking worse case scenario because this is my daughter we are talking about.  Then I just start having this fight in my head and then, like just now, I come downstairs to break down and just cry. 

I pray, pray, pray for good news — something treatable, even if it is a lifetime treatment.  I still can’t wrap my head around all of this yet, especially with all of this uncertainty and the “could it be this?”  But then I keep telling myself that if we are going to get bad news, please let it be after Christmas so we can spend a happy Christmas together.  But if it is good news, please tell us before Christmas so we can spend a happy Christmas together.

This is just so not fair.  Hannah is such a beautiful little girl with such a contagious grin and laugh.  Why does she have to go through this?

We have Early Intervention tomorrow morning… in about 8 hours actually.  I am very interested in learning how this will help her, and us, out.