Bad day/Good day

Okay, the good stuff first…

We had another appointment with Harlie’s cardiologist for a second fetal echo (ultrasound of the heart) on Baby #3. And everything looks GREAT! He said that they got some great pictures and we can stop worrying about this baby’s heart now. I wasn’t really THAT worried since we got a good report six weeks ago, but it is very comforting to know that this hurdle is safely past. YAY!

Our next hurdle is three weeks from now. We have another appointment with my perinatologist for another ultrasound. Hopefully everything will look good then and we can relax the rest of the way (yeah, right).

So for the bad stuff...

So, for physical therapy today, we met Traci at the play area at Regency Mall. We were thinking that being there would help motivate her to go from one area to another – enough to WALK between the areas. So, Brandy, me and Harlie got there a little early since it takes a while for Harlie to walk anywhere with her walker. Harlie will go really fast for a few feet and then stop and not move. Then she’ll go again – stop and start, etc. I don’t get why she won’t just walk a steady pace like a normal kid, but that’s just one of my many unanswered questions.

So, we’re trying to get her in the doors (there were three full sets – so plenty of other options for someone not patient enough to walk behind Harlie). And for some reason, everyone stacks up behind her. Even though it shouldn’t, it puts pressure on me – and I’m sure she can feel it, too. I finally tell the people behind us (who are blatantly staring – with NO shame) that they can go around her, please. They do, but then STOP, yes, STOP to stare and watch her. Now, I try to give people the benefit of the doubt – maybe they are just so overcome by her cuteness that they want to REALLY soak her in. Of course, as much as I wish that were true, I cannot make myself truly believe that. Odds are they’ve never seen a kid like her and they just want to figure her out a bit. Either way – I wish they wouldn’t be so ridiculously obvious about it. Talk about making me feel weird! And I can only assume that Harlie feels the stares, too, because she absolutely REFUSED to walk after that. And although she is only 21-22 pounds – there is NO forcing her to walk. Period. Gee, thanks staring people. And thanks Mom and Dad, for raising me right and teaching me NOT to stop and stare at people who look a little different. I mean, seriously, how in the world could they think that is acceptable behavior???

So, I pick Harlie up and we go to the play area. Harlie started crawling on the stuff, completely enjoying looking around at all the kids. The kids started gathering around her, just staring at her. One mom sat down next to me and her daughter (pointing at Harlie) asked her “What’s that thing around her neck”? She said “It helps her breathe”. Her daughter asked why and she said “because some people need help to breathe”. Just hearing that be said out loud and watching all the kids just stand there and stare at her – all the while Harlie not having a clue what’s going on – made me start to cry.

My child needs help to breathe. My child looks different. The harder I tried not to, the harder it came. It’s the innocence of Harlie not knowing, that tears my heart into a million pieces. One day she’ll learn. She’ll know why they are staring. And she will cry because it’s her heart that hurts. I know it could be worse. I know better than most - now that my eyes have been opened to a whole new world. But, it only eases the pain slightly. The bottom line is that I will still need to do what I need to do to get my daughter through the tough times. Even though it COULD be worse, nothing changes the way it IS.

Well, Traci got there, and I eventually pulled myself together. I can’t help wondering if Harlie could feel something with the staring, because she simply would not cooperate with the physical therapy. She flat out REFUSED to walk – no matter what we did. It was so frustrating. Especially when we know that she CAN do it. I suppose if people staring makes ME feel self conscience, than maybe it has the same affect on her.

That mom that explained to her kids what the trach was, was pretty nice. Nicer than most in that most people completely ignore me – despite what their kids are doing around Harlie. She said she was sorry if her kids upset me. It’s more complicated than that, but I appreciated her kindness. But as we were leaving she said something like she won’t walk because she’s “spoiled”. She didn’t mean it in a mean way, but it definitely hit a nerve for me. Spoiled?! First of all, if there’s any kid that deserves to be spoiled – it’s her. But, we don’t spoil her. In fact, I am harder on her than any normal mom is on her healthy kids. Every day I make Harlie do something she doesn’t want to do. Something that she’s afraid to do. Something that SHOULD come easy to her – but doesn’t. It is not easy to push your child like I do. Thank God most of the time, I am fine. I am happy. I really am. I have a lot to be happy about. I know more than most what a true gift a child is – healthy or unhealthy. But some days, some situations just hit me harder than usual. And I’m guessing that the pregnancy hormones aren’t helping me any.

Luckily, after I dropped Harlie and Brandy off at home, I met Tom at my doctor’s appointment and that went well, so that put me in a much better mood.

Oh, this weekend I e-mailed Robert Barron, the one who does the prosthetic ears in Northern Va. He is the one that used to work for the CIA doing disguises for their agents. He now does prosthetics - ears, noses, eyes, hands, etc. Fascinating stuff. Anyway, on his website you fill out a "contact me" form, which I did, just to find out when we should start thinking about Harlie's ear - and if we should go the prosthetic route, or reconstruction route. So far, Tom and I are thinking prosthetic for now and once she gets older letting her be a part of making the decision for surgery. Well, like I said, I just sent my request THIS weekend and HE, himself, called me TODAY! I couldn't believe it. Anyway, he said to call him back when she's five. So, that's that. I was just hoping that she would get an ear before Kindergarten. But, I guess we'll just have to see how the timing works out. Well, that’s it for tonight.

Take care,
Christy