I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, December 4, 2008

Frustrating Day...

From the minute I put my feet on the floor today it's been a trying day. Alex had a neurology appointment today because a week or two ago I was putting her hair in pigtails and the back of her head felt really weird. Alex has always had plagiocephaly (flattening of the skull), but it was so much more pronounced and the only way I can describe how it feels is like when a pumpkin or melon is going bad...that soft almost squishy kind of feel. Anyway, I take her to her appointment, and it's not one of my most favorite dr.'s to go see anyway, but he starts talking like he normally does at her check-up visits, so I tell him I'm not here for a check-up and tell him about the back of her head...so he ignores me pretty much and continues doing what he was doing - briefly checks the back of her head and says, yep, I feel it. No, I don't remember it being that pronounced before, or the "divot" being there, but she's grown so it's PROBABLY normal....ugggggggh. So I ask him if anything different should be looked at while she's having her MRI and he proceeds to tell me how imaging can be funny and maybe something will be picked up, and maybe not. Then tells me from the reflex test he did (which she pretty much always fails) that he doesn't understand why all of a sudden she wouldn't want to stand, sit or do any of the things that she stopped doing literally overnight because her reflexes were still the same...umm, WHAT? So then I ask him another question about something else that's going on and he looks at me like I'm a complete moron, grills me with questions, so now I do feel like a complete moron, and basically dismisses me.

I leave there and know that I have to run an errand - I had already picked Zach up before her appointment so I was going to just run to Target quick because Alex was out of food and Zach has a Christmas Mother present that's due. The more I think about the appointment as I'm driving the angrier I'm getting. We get to the store and I HAVE to ask this...WHY do people think that the handicap spots are extra spots for the shopping cart return? Does the big blue handicap sign LOOK like a shopping cart return? I mean seriously, as if the people that are going to need that spot are in the position to actually have to clear all the carts so they can park in "their" designated spot. And it's not just today because I'm already in a pretty cranky mood, it's ALL the time and it has become one of my biggest pet peeves. Even if I don't have Alex with me and I park in a "normal" spot, I always collect the carts from the handicap spots I pass before I go into the store because they shouldn't be there in the first place. Sorry I digressed...any way, at this point Zach has fallen asleep, great. I'm unloading Alex, who is connected to her feeding pump, and of course, when I connected her in the parking lot at the hospital after her appointment, I connected her in the way that I have to totally disconnect her so I can get her out of the car seat because the tubing is looped around her car seat strap. Twenty minutes later I have her in her wheel chair and now I'm pushing her and lugging a 40 pound sleeping four year old. Why I'm a glutton for punishment and didn't just give up and go home then I do not know...I always think "I got this"...and in hindsight realize I probably didn't make the best decision...but oh well. So I run in, pushing Alex and dragging a shopping cart behind me...as I'm getting Alex's food she has a complete manic attack and is screaming/laughing at the top of her lungs and pulling her hair out, Zach's whining about how hungry he is and at that point I give up. I check out and start lugging them back to the car. As I get to my car there's a boy collecting the carts who obviously has special needs himself and he looks at Alex and says...she's special, I can tell. And I said yes, she is, she's very special. And he said, well at least you have her and she didn't die. I don't know why but I drove away smiling and thanking him for putting my day in perspective.

My night hasn't gotten any better, Zach is trying my patience like nobodys business, he's also apparently lost his listening ears, and Alex has been a total crank. My head is about to explode so I'm going to crawl into bed and thank God this day over and pray it's a better one tomorrow.

2 comments:

Anonymous said...

Here's to the start of a new day!!

Christy said...

Donna,
I SO know what you mean about so many things - the feeding tubing wrapped around the car seat (had to laugh out loud at that one) and just pushing myself to do things that I see other people doing without any problem (like going into the store with 2 or 3 kids - they can do it, why can't we?). Accepting our limitations is much easier said than done. I'll call you about the MRI. I don't like that doctor, either. He didn't give you any explanation? Oh, and no, no e-mails from Alex. I checked my junk folder, too. Can she resend it? I hope you are having a better day.
Hugs your way,
~Christy