Days 73 - 82

Can't believe it's been so long since my last post.

It's been a pretty chaotic week for me.

Mikayla hasn't really been great. Particularly the last week. She has been terribly miserable. And I am tired of feeling like an island (medically speaking). I hate seeing her seem so uncomfortable. In pain maybe? I don't know. That's whats frustrating. I just don't know. And mostly all I get is a whole lot of pity. I don't want pity. It's patronizing. I want facts. Solutions. Something. (don't get me wrong here... pity, and care are not the same thing!!)

I find all of this so terribly cruel. For Mikayla. She's an innocent child, for goodness sake. Won't somebody help her!?!?

I just feel like I get an "oh, sorry for you. But don't worry, she'll die soon. So just wait for that". But you know what... she might NOT die soon. She may live 2 years. 5 years. 10 years. I don't know. No one knows. Just like everyone else can't plan as if tomorrow will DEFINATELY come, we also cant plan for tomorrow definately NOT coming.

Today and yesterday I am angry.

Mikayla, this isn't right. It's not right. It's so. not. right.

I'm sorry, my baby, you deserved so so very much more!