This is hard

"This is hard" It's what we say when trying to accomplish something new- something completely unfamiliar, something that we watch others do and assume its easy until its our turn. Inevitably there's always someone along the way that says 'nobody said it was going to be easy" and I can honestly say that through every new turn this journey has taken us so far that is the one firm constant- "this is going to be hard" has been uttered in every doctors office, every hospital room, every side hallway doctor conversation- but its always followed by "but you can do it" or "she can do this" or "we're right here with you, you're never alone". 

The past few days have been a testament to that. This is hard- and- we're not alone- and- she can do this. 

Sadie's vitals have improved, she even has a small appetite in the afternoon, of course it's never for hospital food but we're working hard to make sure she's got things she'll eat. She loves to snack on things right now. I imagine it's because it's easier to just eat a few bites of something multiple times over an hour opposed to an actual meal. 

She got her first real mail delivery today and just the pure joy that she had mail when the nurse dropped it off was enough to make me tear up a bit. We were trying to build with magnetic tiles on her table but it was just too small so we put a sheet on the floor and sat down to build a small city and one of the child life specialist came in and said 'I'll bring you a cushioned mat" and just like that we had a soft place to build. She also has a favorite nurse here, he works so hard to make Sadie feel comfortable and not rush her and encourages her. He saw today that she was struggling in the morning with the added medication she has to take because it's a lot of liquids all at once and mentally Sadie is over it. So he looked into it and found that the large one that has a nasty taste to it can be taken as a very small pill- he advocated for her and her doctors approved it and starting tomorrow morning she'll have one less yuck liquid to swallow and an easy pill in it's place. This is hard- but we're not alone- and she can do this.

Sadie takes every chance she can to learn about whats happening to her. She take special interest in anything that touches her. She likes to put the pulse ox on her finger herself, she likes to place her tele stickers on her chest herself, she likes to help pull dressings off and learn how to replace them. It calms her anxiety about it if she can be involved with it- and every single nurse here has been amazing about keeping her involved. They explain medications and stickers, and the different dressings and why her legs have to be straight and where the pulse points are for her blood pressure and why it has to be within parameters for medication and what parameters are. She had a whole conversation about tapes and skin irritations the other day with a nurse- you would have thought it was two coworkers talking and comparing notes. This is hard- but we're not alone- and she can do this.

At the end of today she said "Today was a good day". She ate two whole pieces of vegan pizza (still with pesto), she fist bumped her favorite nurse when he left, she took all her evening medication, and she snuggled up with her sheep and went to sleep. I opened my phone and my heart took a huge breath as I saw all the messages of love from today. I can't begin to tell you how much it means to me to know that you're doing this with us. That I know that she's prayed over and loved on such a large scale- that Harper is looked after and loved- that our entire community wants to know how they're doing- my heart is full.

This is hard.
But God is holding our hands- and he's given us all of you to walk with us- we're not alone.
She can do this.