Be Held

I started writing this blog 4 years ago. Hasn’t time just flown by? It’s crazy to think where we are now.

I can remember, like yesterday the fears, anxiety, worry… all the flooding of emotions that came with that initial diagnosis.

Mike and I sat in the car in the carpark at the hospital after hearing the very first diagnosis of ‘hypoplastic’ heart. It had not yet been confirmed.

We sat in silence. I can remember asking him what he wanted to do.

I felt numb. And yet, I also felt adrenalin rushing through me. So many questions to ask, without any real answers.

In the days following I remember scans and appointments. The constant feeling of being highly strung, unable to relax. It was anticipation, but the anticipation of something bad.

I listened to a Casting Crowns song over and over ‘Praise You in the Storm’. There’s a line in that song that says..

‘I was sure by now, God you would have reached down

and wiped our tears away,

stepped in and save the day’.

I love this song. I think Chloe still recognises this song (am I crazy that she could know that from the womb?) and I still love to listen to it. I just remember thinking, ‘man we are in a crazy ***t storm right now. How can this every work out? I went from despair, to feeling confident in hours… up and down. It was such a huge rollercoaster of emotions.

Fast forward 4 years and we have this crazy quirky toddler. And what I look back on then, a world of medical speak, hospital visits, surgeries…all the things that seemed to ‘out there’… things that I didn’t think I could cope with…well, now they are my normal.

Blood tests, hospital visits, surgeries, medical speak (these days I’m often mistaken for a medical professional), doctors… specialists… advocacy. It is just this normal ebb and flow of normal to abnormal in our lives.

We’ve had the heart stuff on the back burner for a while now. Always lurking there around the corner.

The Fontan.

We were first told about this final stage of heart surgery back in the initial diagnosis. Back then it seemed to far away. I can talk about it now like it’s my second language. So strange. Now, it’s rearing it’s ugly head and we seem to be ready. Chloe is ready. I’m not sure I am, and yet in the next breath I’ll be glad to have it over with.

This is the final stage in Chloe’s surgeries. But don’t be fooled, like so many are. It’s not a cure. It’s not even a fix. And sadly, it sometimes doesn’t work (we obviously pray that it will). This is a replumbing. A change to her circulation. It’s huge.

Do not be mistaken, this is not going to create a perfectly functioning heart. ‘They’ simply can’t do that. But you know what? I still believe this is a miracle. I am fascinated by the ins and outs of this, the surgeons. The surgery. IT IS a miracle that this even exists. Without it Chloe will deteriorate and slowly be lost from us. So yes, even though this doesn’t ‘fix’ things, it is still a wonderful miracle.

If it works, which of course it will (just putting it out there), Chloe will not be breathless anymore. She may even be pinker (though we’ve had it explained that due to some complications with collateral veins this may take a while)… I’ve been told she’ll have more energy. (Okay this is a somewhat scary prospect!!)

Chloe is going to have this very soon. Our cardiologist has done a cardiac catheter last week to get the real picture and he told us ‘she’s a perfect candidate, perfect pressures…’

Chloe resting after her catheter procedure. We went home that night, she was a star!

And so here we go again.I have spent some time this last week thinking back to those early days. The unknown of surgeries, intensive care wards, medications, fluids…the list goes on. So many aspects of the life of a ‘heartkid’ that I didn’t know before, are just part of our regular world now. It is all just so ‘normal’ to think about this stuff.

How did we get here? To cardiac stuff just being part of regular conversations? It honestly is just a crazy feeling.

When I reflect back on those early emotions to now, I’m in a totally different headspace with it.

Am I scared? You betcha!

Am I nervous? Absolutely!

Do I wish this wasn’t our normal? For sure!

But then again, I’m grateful that is part of our life, because without it all, we wouldn’t have her crazy little quirky life!

So when you’re on your knees and answers seem so far away
You’re not alone, stop holding on and just be held
Your world’s not falling apart, it’s falling into place
I’m on the throne, stop holding on and just be held
Just be held, just be held. (Casting Crowns – Be Held)

Back then I often felt like I was barely holding on. Barely just trusting in the One that held life in His hands. I love these words about just being held. It just gives this sense of not clinging on by the last thread, but rather, just waiting. It has a sense of peace of about it. I like that feeling, I can’t explain it in words. It’s just that knowledge that I know there is someone greater than me, greater than the doctors or surgeons, that holds our Chloe safely, and that we can trust it.

So as we face this next big hurdle, I’m urging myself to just be held. To rest and trust in the One that is greater than the scary stuff in this world. That the world isn’t falling apart, my world, is being held together, it’s all coming together and falling into place.