Little piece of heaven

I can't believe we're in 2019. It doesn't feel real. Can someone just stop the time right here, right now?

Uh, are you stuck Arabella? Can't move?

Why don't you have a seat, darling.

You know what - if I could live forever in any one period of time in my life, I would want to be stuck here. Right now.

That's what I've decided. 

I could live in this time, in these moments. Eternally stuck here. Forever.

I imagine that's what heaven would be like. Your favourite time in your life, with your favourite people, living out a beautiful yet completely ordinary moment. 

I would want to live in this moment over and over again. 

Maybe heaven is just a Tuesday night? Featuring a bubble bath. And later, a story about a dog named Biscuit. 

I would take that kind of heaven. I would take it 100% of the time if God offered it to me today. 

So here we are...2019. It's a new year and Bella's off to a running start. 

Last year was a big year for her, and we watched her knock off a lot specialists, follow-ups and personal goals.

Every so often, she really surprises us. As kids tend to do! Just when we think we have her figured out, she does something that blows us away. 

Over the last few months, Arabella started to eat A LOT by mouth and it's been absolutely amazing. It's huge progress, after barely eating orally at all.

I can't tell you the joy I feel when we're all eating together as a family, or when I see her signalling for more food. I'll never take that feeling for granted, that's for sure. 

I remember how crushed we were when Bella stopped taking the bottle. We almost felt depressed. We felt like we failed as parents. And we lost a great way to bond with her. Suddenly her oral aversion got worse and worse.  

We still tube feed Bella but it probably amounts to 30-40% of her total daily intake. Even still, the kind of progress she's made up to this point is extraordinary. 

When it comes to drinking water and other fluids, that seems to be her biggest hurdle right now. For kids with oral aversions, drinking is something that often takes a lot longer to grasp. I mean, she knows how to drink, but it's a matter of her being 100% comfortable with it. 

Right now Bella's favourite way to drink is by syringe. Little bits at a time. But it depends on her mood. Sometimes she just doesn't want any kind of fluids, so we're forced to give her water by tube. 

In our home you'd find 30 various children's bottles or cups, because we've tried every kind imaginable hoping to find "the one" that Bella would like. At this point she doesn't like any of them. Regardless, we know that one day she'll come around. Bella takes things at her own pace, and that's all there is to it. 

Ever since Arabella was born, the advice that we were given was "take it one day at a time". It's truly the best advice you could get. 

When you take things day by day, you're not rushing too far ahead. You get to take in the moment, and be present for it. What's the rush for tomorrow? There's always another challenge or obstacle waiting for you around the corner, so the idea is to find your own little piece of heaven in today.