Days 109-115

Shew! Where have the days gone!

Mikayla has been doing this very cute thing where she sucks her hand (self soothes! clever little girl).... on Sunday night we went out for a superb quality meal at... er... Spur (ok, not so quality then... but it's a big night out for us!!). Mikayla, at her little tender age of 16 weeks, was completely sold on the place. She was mesmerised by the lights.... all bright and colourful, and spent practically the whole time just STARING at them, while sucking her hand.... check her out:

As she gets older, it gets harder to "cover up" her disorder... not that I am trying to cover it up, mind you, but the minute people ask how old she is, and I tell them that she's nearly 4 months, they're shocked at her size.... which of course opens up a whole discussion on what's wrong with her. And then, cos most people don't know what a chromosome disorder is, let alone T18, it means I have to then explain the whole thing including her prognosis... so the older she gets, the longer the explanations get. What a bog!

The other thing with Miks the last week is that her voice has got all croaky. I don't know if perhaps she has a sore throat or something... but she has no temperatures or anything. She is also quite sweaty lately? Maybe the sore throat? Maybe not? Gosh! Who knows?! She has slept like an absolute star the last two nights. Although, I must confess, it does get a bit freaky when she goes for a 6 1/2 hour stretch.... and we wake up ready for the day, to no sound coming from her room. I avoid her room for about 15 minutes.... strange feeling! But she's seems to be fine. Still only does her little smiling thing seemingly to herself... although sometimes, when she feels like, she charms the socks off me with a dazzling little smile....uh... and then she looks out the window! It's very sweet... albeit somewhat disappointing that all the leaping around the room looking like an idiot isn't funny enough for her to smile at me :-). She probably just thinks I am a complete fool!! She wouldn't be the first then :-)

So I woke up at some ridiculous hour last night, and then couldn't get back to sleep. It seems a favorite pastime of my mind is to have little blog conversations in the middle of the night. NOT cool. So I thought I'd better jot it down lest it bothers me another night at 2am in the morning!

You see, I know the sky is blue. Just like I know that water is wet. That simple fact does not change. Aha... I know what you're thinking! But the sky's not always blue, right? Well, actually, the fundamental fact that the sky remains one colour no matter what "life" throws at it, doesnt' change. So, when there are clouds, I know that behind the clouds is blue sky. And when the sun sets, and there are beautiful casts of reds and oranges... I know that the fundamental fact that the sky is a particular colour doesn't change- its the rays from the sun that give it that colour (we can nit-pick on what the ACTUAL colour of the sky is... but the point is that whatever that BASE colour is, that remains the same, regardless of what "taints" or "changes" we see with our eyes). Here's the thing: God is the same. He is who He is. His character doesnt' change. Life may throw us curveballs, and what we think of Him may be clouded over- but it still doesn't change actually who He is. And we have a choice. Like I choose to believe the sky is blue, no matter what colour my eyes see when it's cloudy, or at sunset, so I can choose to believe God is who He says His is, regardless of what my circumstance may say. In my opinion, all the bad things are simply proof that we live in a fallen world.. they're not reflective of who God is at all. Yes, He had and has the ability to change Mikayla's condition, but for whatever reason, He has chosen NOT to make her better. That doesn't mean that He isn't who He says He is.

I just wish we could unpause our lives.