Sunday, March 13, 2011
I have discovered a blog that everyone should check out: Mommy Wants Vodka. She is a mommy blogger, but so much more, and it turns out she's been through this whole encephalocele thing with her daughter, who is gorgeous, by the way.
So, if I were to think about what this Mommy wants I think it would be a very different kind of blog. Mommy wants cheesecake? Cheese curds? Fried cheese? Cheese burgers? Anyone else sensing a theme? Anyone else wondering why I gain too much weight when I'm pregnant? Yeah, me neither. Now I'm craving cheese fries.
Anywho, the only thought occupying my mind more than cheese is still Liam and what's going on with him. I'm anxious to hear from the Neurologist. I wish I could have done the MRI and the consult all in the same day. It's still possible that all the things I've convinced myself are in our favor, are not. And he'll give us as bad a prognosis as I inferred from the Perinatologist. (I can tell I'm distracted since I just had to actively think about the difference between implied and inferred)
So, what if? What if he's profoundly affected by this and doesn't have long? Then I suppose we'll turn to hospice, and do our best to enjoy our time and make him comfortable. If he doesn't make it, then my heart will break, period. I don't want to prolong his life or put him through painful procedures just to prolong my inevitable heartbreak. I believe in hospice and while I never want to use it, I know I'd be grateful for it.
But I'm not there yet. I still feel like this is all going to work out. My head is processing all possible outcomes, but my heart is only seriously considering one: that he will be okay. I'm starting to wonder if I should rent a doppler (or beg for or borrow one from somewhere/someone) as I so often feel the need to reassure myself that he's still in there. You'd think my cheese cravings would be enough proof, but what can I say? I'm slightly mental at this point.
Now, it's time for my education to begin. I want to know all about these things, what they mean, how they're treated, etc. I want to sit down with the neurosurgeon and have some idea not only of what I'm talking about, but of what to ask him, too. I'm not entirely sure how to kick an encephalocele's ass, but if there's a way, I'm pretty sure I can find it. And like I said, as long as Liam keeps fighting it, I will too. And I'm really lucky, because I have an amazing family, and an extended network of real life and internet friends who seem to be coming out of the woodwork to fight with us. There aren't nearly enough thank you's for that.