Monday, September 13, 2010

Oh brother, times 10

In choosing to blog about life with a child with special needs, I think it would be irresponsible not to include some of the bad days . . . otherwise, readers who are in similar situations may feel like I'm idealizing life, or minimizing and skipping over the obnoxious, challenging parts.  Today was one of the lousier days.  If you're thinking "Lousy days be damned---make me smile!", then just skip ahead to the end :)

Today a lot of annoying things added up and became totally overwhelming.  Here were a few:

1. We have a huge stack of bills and insurance stuff to deal with. I have to call them, but I've been putting it off because although I hear of people "fighting with their insurance" to get things paid for, I have no idea what that actually means. I feel like I'm going to call and talk to some pencil pusher who says "we don't pay for that" and I'm going to say "you need to, the geneticist said she needed this test" and then he'll say "well, we don't" and then what do I do?  (I'm going to start making calls tomorrow, though.  I know I'll feel better once I address it.)

2. Parker's therapy dog class last night sucked, and I have a ton of work to do with him.

3. I can't get anywhere with the agencies that are supposed to sign off so that Maya can get splints for her legs. The process has been going on for literally months. I spent time basically bitching at several different people over the past 2 weeks, but all of them are powerless . . . the people who actually have the power to move it along either: are never in the office, don't answer their phones, or have permanently full voicemail boxes. I am waiting on a new phone number that I can start calling to bother people, and soon I'm going to request an address and just camp out there.  With Maya.  And Parker.  And we're going to sing "Wheels on the bus".  Over and over.  And then I'll change the lyrics to "The people in the office need to sign that form, sign that form, sign that form . . . the people in the office need to sign that form or we'll never, ever leave."

4. I worry that our lack of ability to get spints, and to get our speech agency changed, might indicate that this agency will mess up our transition to the preschool system, which starts in the winter/spring.

5. As I try to do all of this, I still am surrounded by way too much stuff at home. Why is there a pile of change, a tube of sunblock, and business cards on the counter?  Why can't we stay on top of putting things away, instead of emptying our pockets or stroller contents or whatever when we walk in the door?  (This is why the purging & reorganization project will continue, even if it's only at a snail's pace, until everything has a home that is easily accessible.)

I've just had it today.

And I tried sitting on the floor and crying, but it didn't help.  And Maya didn't understand what I was doing, and sat next to me with a furrowed brow.  Then I sniffled "Mommy's sad, Maya.  Can you give me a hug?"  And she climbed right into my lap and did just that.  Then she squeezed a handful of my face and I had to kick her off.
 
So, there's that.  It's not all sunshine and roses here . . . but we do have some good times :)  New pictures are up in the Facebook album "What clean(ing) looks like", so you can see progress in the media center bookshelves.  And here's a video of our dynamic duo . . . playing together in the hallway. 
 
Highlight: You may not have ever heard Maya talk before, because she gets pretty quiet when other folks are around.  But here, you can hear her version of "Pa-pa"----her nickname for Parker.  It's the only thing she'll reliably say almost every time we ask her to.  The silly part is that she says "Ma ma!" instead of "Pa-pa".   You'll hear it at 1:03.
 



Remember, if you just see a blank spot with a "play" arrow underneath, click the arrow and the video will start!

2 comments:

rocketmommy said...

I'm sorry you're having such a tough time right now. We'll be thinking of you and wishing you the best of luck with the insurance issues and everything else. We hope it all gets better soon. 8)

Dana said...

Thank you!