Calling it how I see it

Can I get something off my chest?  Something that really bothers me because I don't think it's true, but something that spina bifida mamas say all the time.  "Yes, life is hard with spina bifida, but I wouldn't have it any other way."  Come on.  That's a LIE!  Do you honestly think there's a (legit) mom out there who is HAPPY her child has spina bifida?  Nope.  No way.  Ok, I admit that during our move in the last month that I have been happy that Emma isn't standing and running on her own for ease of packing and moving, but that's more like finding the silver lining on a very dark, black cloud.  I would never, ever say, "Oh, but I wouldn't have it any other way."  God calls us to seek Him everywhere, in all our circumstances and everything we do, but let's not confuse seeking the Lord in this less-than-perfect world with plain old ignorance and fear of facing reality.

Ok, now that that's out of my system, on to more pleasant things.  Mostly pleasant.  Maybe a little alarming.  First of all, we awoke on Sunday morning to find Emma's angelic little face completely unmarked by the pressure points of her bipap mask.....because she had completely dismantled the mask sometime during the night.  We have no idea how this happened without us knowing it because anytime there's a significant air leak, an alarm goes off.  This happens SEVERAL times a night, usually because Emma has moved into a position that shifts the mask.  How did we not hear the alarm Saturday night?!  Maybe after a certain period of time, it just stops beeping?  So if it beeped for that long, why didn't Emma cry about it?  Her crying is louder than the alarm.  And I know she didn't disassemble this complicated mask in her sleep.  On the rare occasion the mask completely comes off her face while the air is blowing, it's LOUD and very violent, so I KNOW she woke up when the mask came off.  I just don't get it.

This is how the mask is supposed to look:

And this is how it looked on Sunday morning:

Since we're on the topic of Emma's room, I came home to find some sort of strange home renovation casualty in her room. Our electrician is here this week doing all sorts of things to update our house. And when I say updating, I mean joining the last 30 years of civilization by getting outlets in our bathrooms. But I digress...after the electrician's first day of work, I investigated the progress and found this in the corner of Emma's room, which actually needed no electrical modifications. See that smudge on the left? That's blood. And not anyone's that lives here. Interesting, huh?

 

In other news, Emma has been making huge strides in eating.  She has good days and bad days in terms of amount and nutritional quality of what she's eating, but overall she's doing really well with new and different foods and textures.  Tonight she scarfed down a pretty good bit of a grilled cheese sandwich and drank a lot of water from a cup.  She won't use a sippy cup or a straw, so we're kind of skipping right to drinking from a cup, with a lot of assistance and overflow.  Here's a great shot that Aunt Ally got of her trying to shove an entire chicken salad sandwich in her mouth.  Emma has become a chicken salad connoisseur, just like her Nan.

This next set of pictures is a little late, but better late than never.  Emma came to the Boston College/Clemson game with us a week ago, and she and I stayed out in the parking lot in the PERFECT weather to enjoy the game via satellite, with lovely wagon strolls during commercial breaks.  As much as she LOVES her wagon, she still needed to find some things to entertain herself, and toys are becoming increasingly less entertaining.  Enter the unopened bag of BBQ Fritos.  And my bracelet.