The past 5 days have been pretty lousy, over all.  And now I’m feeling tired, frustrated, and angry.

Anna’s levels have been elevated.  We believe this was brought on by her period.  There’s no other explanation, she hasn’t been sick, constipated, overexerted…. None of the usual reasons. And it’s been really difficult to get them back down.  Since Saturday, all she’s been allowed to eat is food with zero protein.  This amounts to pure sugar.  Hunt’s Lemon Pudding, popsicles, frosting, candy, Gatorade.  That’s it.  Now, for a healthy child, this seems like a dream diet.  When it’s what you’re forced to eat, it becomes almost naseating.  And that’s exactly what it has been for her.  She just doesn’t want to eat at all.  She is, thankfully, drinking double the amount of formula she usually does.  But she’s really starting to get down.  After her dietitian called yesterday with her latest blood test results, Anna wrote on a piece of paper “I want to be killed”.  That breaks my heart!

Of course, most who read this won’t understand what MSUD is.  Or what high levels are, or why that’s bad.  Honestly, I am pretty damn tired of explaining to people.  It’s rare, no one has heard of it.  And even after I try to explain, I know that no one truly “gets it”.  They think they do… but they don’t. So there’s no way to express how difficult this is for her.. for us…

I’m trying not to go deeper in the depression that this can bring.  I’m trying not to curse God for giving Anna this damn disease.  Trying not to feel that the line “it’s part of God’s plan for her” is complete bullshit.  I don’t understand how God could put her through this?