Shew! Where have the days gone!
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!
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.