Birdy on a wire…

Last night Jason and I watched Nik Wallenda walk a tightrope over river gorge near the Grand Canyon on TV.    Talk about nerve-racking!    To be honest I was only half watching and part  way through when I wasn’t concentrating Jason yelled “He’s falling” and I whipped my head around to see the TV so fast I’m surprised I don’t have whip-lash.

Well thankfully he didn’t fall, Jason was just having some fun at my expense, but I found the whole thing way to tense.    And I think that’s mainly because I feel like Ava’s the one walking the tightrope right now…  complete with scary episodes where she almost loses her balance and falls off the wire.   Thankfully by the grace of God she didn’t die this past week and has steadied herself, but  it doesn’t mean the journey ahead is less precarious or that I’m not worried that she might fall off again.   What a crazy journey to be living.

But she was transferred back up to 4D today – the hospital’s Cardiac ward.   It really felt like coming home and everyone was happy to see us back.   And Ava must have been glad too because after a nap she finally smiled at me!!    Me, her mom, she smiled at me…. something she hasn’t done for days.   It was wonderful to see her happy and content and I know that she’s pleased to be out of the critical care ward.

And so  it was a good day today that followed a great day yesterday that I had with Jason and the kids.   Ava was so sleepy yesterday that we took advantage of her one-on-one nursing care in the CCU and took a bit of a break from the hospital.  We went as a family to church and joined our Harvest Oakville family for worship in the morning.   And wouldn’t you know it, but the sermon yesterday was “when Faith needs a boost” and it certainly boosted our faith… we were reminded to look up to Jesus,  as the alternative is looking inward and self-pity is definitely a faith buster. 🙂   We were also reminded that just because we don’t see God working doesn’t mean He isn’t working, and that the greatest work God is doing is the work that we can’t see.  Cool huh?

Jason and I left very encouraged in our faith and we were so thankful that God had led us to church that morning.

We also sang a song during worship by Matt Redman…  ‘Never once’.    It really resonated with us.  Love these lyrics;

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone 
Never once did You leave us on our own
You are faithful, God, You are faithful

Words that Jason and I can echo for sure.      So even though our little Birdy is on a wire, we know that God has her in His hands and we just have to keep looking up to Him and trusting Him completely.  Even when times are incredible tough and it hurts so much, we can attest to the fact that God has never once left us to walk this difficult journey alone.

What a roller coaster ride…

So life here really is like riding an emotional roller-coaster.  There can be such ups and downs and I won’t lie, it’s very tough and emotionally draining and that might be why I just ate a ton of chocolate … chocolate is very very very good.

And of course, the timing of these roller-coaster rides is always bang on,  it seems to get you when you are already tired and wound up.        See we were visiting Ava last night around 9:00 pm and happily chatting with her nurse, when all of a sudden the baby next to us went into cardiac arrest.   Our nurse ran to this baby’s side, the room filled up with people and I just started praying like crazy, but as those parents started to sob, we left and didn’t end up being able to go back and see Ava again for the night.

That was a horrible experience.   We were pretty shaken up.  Thankfully that baby was OK, didn’t die and after talking to her parents today they said that they think think she had a blood clot since she had just had surgery yesterday.   Thankfully she was able to be stabilized and has had a fairly calm day today.

But it meant we started today perhaps a little more keyed up then usual.

And then of course I posted about how they were going in to remove Ava’s stent that was keeping her chest open and hopefully close her chest up.

And they did close her chest.  For about 20 minutes.

Then they came and told us they had to open it again.   She wasn’t tolerating the close, her heart rate had climbed and wouldn’t come down so they had to open it again.

Now we are back to square one and it’s disappointing.

I guess I like to think of my baby as so strong, and she is.  But she is also very fragile.   And it’s hard to understand God’s timing today when the close seemed like an answer to prayer, but then that wasn’t what He had in mind after-all… and for a minute or so I wonder why He allows these things that seem so amazing and then aren’t.   But then even as I’m typing this is what came to mind… a verse from Isaiah…

Isaiah 55:8-9

8 For my thoughts are not your thoughts,
    neither are your ways my ways, declares the Lord.
For as the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.

So a day like today doesn’t make any sense to me, but we can still trust God in this, we can!    I’m thinking in my own human terms,  but God has his own plan for Ava, we just don’t know what it is.

Here is another verse from Ephesians that’s my prayer…

Ephesians 3:20,21 

20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

To God be the glory, a baby’s chest closed today or not.