Find your groove and keep on…
The new year is here and in some ways I feel like we are starting to get our groove...Rory still has her hard days and moments but overall I feel like we are getting a rhythm. She’s had more quiet pleasant times , I don’t know if it’s her new feeding schedule, getting bigger and growing some or what but all I know is it’s starting to feel like we are establishing a new normal (for now). Some days and moments are still really hard, and our normal still looks different than the “normal” of parents with a typically developing child...but it’s nice to feel like we are getting there(With so much support from family we are thankful for). And each day I fall more in love with her and realize even more the blessing and gift of getting to be her mom. No matter the sacrifice/challenges it is so worth it and I wouldn’t trade it.
I am also so thankful for how at peace and calm she was over the holidays especially. The last two weeks of December were low key and filled with family..such a gift after this year. I think she liked having the time with family and it made her chill and happy.
So it’s a new year, and we remain optimistic for what is ahead...even though already 5 days in we’ve had some hard moments, hours, and days (like our country) ... we aren’t giving up hope. One of my goals for 2021 is to find thriving in this new norm. I feel like we’ve been living in survival mode for too long (or at least I have) and it’s time to shift from surviving to thriving . There are several factors and tactics that help play into making this shift (believe me, I’m going to write a book about it one day soon here ;) but what matters most?! Mindset and heartset... setting your mind and heart on above...on Christ, on the kingdom. Keeping positive, hopeful, faithful and not giving up. There will always be hard things and disappointment this side of heaven. We must try to keep hope and reflect the light others need and that we ourselves need. Letting go of the past normal, and embracing the new ..knowing you will get your groove again..it just may look a little different and require different things from you.
As Pete the Cat would say ...just keep moving along and singing your song..no matter what puddle you step in! It’s all groovy!
Health updates:
Rory had an EEG this week to determine if the spasms she has are seizure related..still awaiting her results
G-tube surgery...it’s scheduled 1/21. Rorys first big procedure to get a tube placed in her stomach to help with feeding long term (bye bye NG) prayers for a smooth surgery and recovery with no complications.
Had to stop the antivirals again due to low white blood cells..so praying her WBC and neutrophils go up again so we can finish out the medicine (it’s been helping..her viral load is down to about 400 now..it was 1 million when she was born (still unbelievable she’s here with how high her load was)
Continued prayers for her development... for daily miracles as she grows and for her ultimately to be happy, at peace and not in pain.
Lastly prayers as we make decisions for our future as a family. For wisdom and clarity on where to be.
Thankful for another new year!
