For a parent of a fighter of Cystic Fibrosis, it is a roller coaster of emotions. Today was no different.
Last night I wrote a blog post that talked about trusting God through everything, based on the song “With Everything” by Hillsong United. I talked about how the words have been in my spirit this week with our family going through it with this flu like craziness. Today, it got amped tenfold.
Around noon, I had tucked in my five year old for a nap who is getting over the same sickness I’ve been getting over. I went to our bedroom to get a nap in, and my cell phone rang. It was Grace’s childcare. This can’t be good.
“Please come. Grace has a temp of 101.4 and withdrawn.” I immediately called my wife and figured out childcare for Levi and Josiah (greatest in-laws a son-in-law could ever have…thank you both!). I got in my car and texted some prayer warriors that have helped to move so many mountains in my life and gave them a 20second text to pray. Reached out to the clinic and they immediately advised to bring her in tomorrow first thing. I buckled the seat belt and sped out of our neighborhood to get Grace. My phone immediately started to play through bluetooth, and it went to my song for this week. I was like, I literally just wrote about have hope through good times and bad…through everything. Ok, God I see you, in this case I hear you.
Again those words:
So let hope rise
And darkness tremble
In Your holy light
That every eye will see
Jesus our God
Great and mighty to be praised
My mind immediately began thinking about the checkin process. Insurance battles. Getting her room. Her crying. IV’s, picline, her meds, sleepless nights, the room. X-rays. CT Scans. The boys. Trade offs with my wife. Work logistics. The wonder if today will be the check out day. I was like NO NO NO NO not again, please not now God. It’s just not fa—-but as I tried to finish the word “fair”, these words came through my speakers but rang like a heated arrow at my spirit:
With everything, with everything (with everything)
We will shout for Your glory
With everything, with everything
We will shout forth Your praise
And our hearts they cry
Be glorified
Be lifted high above all names
For You our King
With everything
We will shout forth Your praise!
Ok God. I get it. So instead of saying, “NO NO NO NO” I immediately gripped my steering wheel and shouted “With everything, with everything, We will shout for Your glory”. As tears started falling I had peace rising.
I got to the childcare center and the teacher was concerned. Grace was sleeping and had so much phlegm. I carried her out and she was so not herself. Grace says hey and smiles to everyone, especially me when I see her. She just melted into my neck, no smiles, and was snorting the whole way home. I got her home, gave meds, and rocked her to sleep. I sang the song to her while rocking her. As she drifted to sleep I told her we were going to see Jesus move today and praise him today for it.
Two hour nap and a breathing treatment later…we have our Grace back. Complete 180. She was dancing with her brother and giving me huge smiles. It’s like she never had 101.4 fever. Still congested but the pale sunken eyes were replaced with that sparkle and smile that only my Grace can give. We still have the appointment at 9am and I know they can say to admit her…and that’s ok. But I’m telling you, she’s better.
“With everything, we will shout for your glory.” It’s so easy to say and sounds great to sing. Every day we are faced with moments that can break us or strengthen us. I believe it is in the “NO NO NO NO” moments that you find your real faith. Trust in God with everything. He reminded me of that today. Regardless what happens next, trust in Him with everything. God loves you.
Thank you for your continued prayers. We are on this great journey together!
