A Day of Rest

I love Sundays. I’ve always liked them, but lately they are the one day I allow myself to just relax with Annabelle. I put praise and worship music on from my phone, and just do little things that I WANT to do, nothing that I HAVE to do.

Today, I decorated her room with some fun wall stick things that I found at Target. They had ones with big flowers that I was going to get… but then I found one where you could actually spell out her name with the stick-on letters. At first I decided na… I’d rather have the flowers because her name is already on the door.

But then I saw the picture on the box.

Um, yeah. They even spelled her name the same! I decided that it was meant to be.

So this is her newly decorated wall!

Also bought some valentines day decorations to add to her door, and put those up today too. Maybe it’s silly, but making her room “homey” makes me feel like I’m doing something for her. Even though I know she doesn’t notice any of it. It probably makes ME feel better than anything.

Had a great day yesterday with my girls! Spent the morning with Gabby, had a good breakfast at the Ronald McDonald House (a very sweet group came in and made YUMMY pancakes and eggs!) spent sometime with Annabelle, then went shopping and to lunch, then got Gabby’s hair cut.

Then spent the afternoon/evening with Karalynn and Lacy, went shopping for some things they’d been needing, got my toenails done and their fingernails done, went to dinner (I ate A LOT yesterday!) then went and shared some yummy cupcakes.

In the busyness of it all, I forgot to take pictures though. Grrr! I did get this one of Gabby and Annabelle though!

Back to today:

Annabelle is having a fair day today. Not as good as her last few days though. She’s a little more cranky (although finally sleeping soundly now!), her heart rate and respiratory rate are both elevated some, and her temp, while not a fever, stayed a little higher than normal this morning.

We’ve made some changes to her sedation meds to try and help her be more comfortable. We also went up a bit on her Vapotherm. Not sure if the changes will help or not, but the thinking in rounds this morning was that there is no hurry to wean because we don’t have any goals to go upstairs or home before she gets a heart, so no reason to tax her more than we have to. We want her to be comfortable and happy, because if she gets too irritated, her numbers get worse.

On the reverse side, we don’t want to make her too sleepy and “drug” her up either. It’s a fine line.

No word from Boston. Vandy shipped the MRI information to them on Friday, so not even sure they have it yet. (I assume when they say ship they mean literally… like FedEx.) We expect to hear back, hopefully, sometime next week. In the mean time, if a heart becomes available, then we’ll get a new heart.

Listening to the song “Amazing Love” right now. It echos something that I’ve been thinking about lately.

So, yes, life at the moment is crazy for us. Things are in limbo. My daughter has a heart that is barely working for her. My new home is the hospital.

But I’m thinking sometimes we get caught up in our circumstances, whatever they may be, and lose sight of the really basic, simple truth of God’s amazing love for us. Despite everything that has happened, I still serve a God who loved me enough to die for me. To come to earth in form of man and suffer worse than I could ever imagine. To save me. 

It is at the core of the Christian’s belief system, but I guess I’m just thinking that sometimes our sight gets blinded by what is going on right here and right now. There are many times that I just want to collapse and get mad that all this has happened, but then I am reminded about God’s awesome, amazing love, and that no matter what happens, Heaven is still our goal, and our ultimate hope is not on this earth.

It really should be our JOY to honor our King. Our circumstances may change, the might get better or get worse, but I’m resting today in the fact that our God NEVER changes. He never gives up. He never quits. He always loves us.

No matter what.

OHHHHHHH!!!! So, I just wrote all that, and then I got up to take a few pictures of Annabelle to post on this, and I got the SWEETEST sight EVER! See for yourself… (and some other random pics)

As a note, a smile is HUGE for me. Annabelle hasn’t REALLY smiled since she was 2 months old, a fact that makes Mommy very sad. But that’s she’s smiling a little in her sleep is a HUGE step! YEAH!

Relaxing in her bumbo with her lion and doll.

I think she’s ALMOST smiling here, too!!!! I think it’s the bow… she likes it!

Annabelle relaxing on a Sunday too! Night-night sweetie!