Rain doesn't last forever

There's a song by for King & Country called God Only Knows. They did a version of it with Dolly and its one of my most played songs. It's a song about hard times, depression, struggles, loneliness- that deep dark that we all have- but it offers hope in those times- it offers someone that will never leave you, and understanding.

I don't usually write about the down side. I try not to bring focus to it because I believe that even in the darkest of times that there's light to be found- and it's in those times that it's more important than ever to hold tight to the good and the faith that will pull through it. 

But. Today I'm going to touch on the moments because- well they're a part of this journey too and they have a lasting effect. Sadie hasn't slept through the night in a few nights because she continually wakes up at 3am wide awake and grumpy about being awake. I have a strong suspicion that it could be the caffeine regiment that she's on- and her team is monitoring it-  but I want to touch on the fear of 3am. 3am scares me. Actually every face she makes of discomfort makes me stop and assess her- but 3am sends fear through my body. It has me jumping out of bed and checking her pulse and her blood pressure and her temperature, and her respirations and asking her how she feels- and her answer is usually annoyed that she's being fussed over and that she just wants to go back to sleep. 

Last Thursday was a month since transplant for Sadie- and I can now talk about the beginning of this- it was the darkest, the deepest- the hardest part to start to get a grip on and remember to follow faith out. I didn't know sleep for that first week. Sadie didn't know sleep that week. Every night was met with ICU delirium and monitors and pumps and pain which brought fierce prayer, whispered pleading, and a depth inside ourselves that only God could know. Those moments were pitch black. I will never erase the picture of walking into the room the first time and seeing her connected to four different machines- one breathing for her, one pacing her heart, one pulling the fluid from her lungs, one pushing medicated oxygen into her- having an IV pump with over 20 different medications run through them to her. A lot of people talk about holy moments- that was one for me. No amount of previous work or literature, or caution will ever prepare you for seeing it be your child there- and that was the bottom for me. It was that moment that I wasn't alone. Looking back on it I think there was a room of angels there, watching her, taking care of her and then carrying me, breathing for me, bleeding strength into me so I could stand by her. 

I shared with you all a lot of our ups and downs, victories and disappointments- I left out the finer details of some of them- the rush of every doctor into her room mid morning because she started to crash the day after, the midnights where her sats would bottom out and then reset, the beeping of every single machine alerting at the same time, the longest breath of my life when they first stopped pacing her and watched her hear rate drop rapidly- the sound of her pleading to stop when adjustments had to be made, the rock bottom that I had to watch her hit- and then choose to climb out of- that darkness will not be forgotten- the reminder of it shows back up at 3am when she can't sleep. In the middle of the day when she gets nauseous because she tried to eat something. When she goes from playing one second and panting the next because her heart's learning how to keep up with her movements- it's still there. I keep it tempered, beneath the surface to not scare her, but my heart is running a marathon each time.

Then comes the breath of relief.

The faith that got us through those moments, every single one of them, comes too. The prayer, the people, the love and support and continued answer to every call shows up and reminds us of how far we've come. There is so much good to hold onto, we just have to choose to hold tight to it- so I do and sometimes 3am makes the dark a little thicker and more menacing but dawn always comes and the light always answers. 

Sadie is adjusting still. This has been a hard week of adjustment for us, but she's making progress. Her team has adjusted a couple of  her medications and now we wait- we have to give it time to do it's job and we go back on Wednesday to have more labs and a full day of clinic testing to see where her levels are. 

We're here- not in the hospital.
She's taking all of her medications without issue
She has an appetite
She has the energy to play
I get to hear her laugh
I get to hug her without tubes or lines or machines
We're okay- we're blessed
We've just got to wait a little longer. 

We love and miss all of you.