The good days and the hard…

It’s funny how one day can feel like things are so good and that life feels doable again...’we got this‘...then the next can feel like...’how ....are we ...going to ...survive?’ It’s also funny how much the temperament of a two year old and newborn can influence these feelings 😂🙃😳 

Perspective matters: Like most people we have our good days and our hard days...trying to work on my attitude and mindset to help when those hard days come to have strength. The truth is weakness is OK .. realizing you can’t do it is the first step….but the second step has to be realizing our need for dependence on God...and believing with his strength (and asking for help from others when we need it) is what will help us be able to keep going when it feels too hard.

Some days I’m just ready to fast forward... to look back and hopefully understand why this season had to be what it is...and how it hopefully brought us to something good... but then God whispers and says... but today is good... even in the hard.. I’m here and it is good. Pause and (as you constantly tell your two year old) breathe... take a deep breath ...and breathe... “ turn it around” as you say to Jed... I say to you... breathe. For even in this... I am here...don’t miss the good. 

Stop your discontentment, stop your jealousy, stop comparing, stop asking why, stop your fear of the future and stop stressing over what you don’t have, release your anger, your sadness...and embrace your reality. Embrace today... you are not alone. I am here. Your wonderful support system of my people I’ve blessed you with.. is here.

Work through the emotions, don’t ignore them, but work through them and ...keep ...on...moving and keep choosing to “turn it around...into something good” (As Daniel Tiger would say ☺️) .

I meditate on all this as I reflect on Rorys MRI which I saw for the first time this week at our first neurology appointment . My reaction was to be sad...b/c the results honestly are sad...as the NICU doctor initially said “her brain was devastated by the virus” which is true and we should be sad and mad about that...and it’s ok to feel like …what kind of future is this? Why? It feels so unjust to her, to our family, especially to her. But to move forward in hope you must find a way to look at it different..and think..look at what she IS doing..despite that sad MRI. Our neurologist said...he has some patients who will never achieve what Rory already has..she’s breathing and feeding on her own w/o equipment..she cries and can be soothed (sometimes ☺️) which is a good sign.. she kicks her legs and arms and lifts her head.  

 So instead of getting stuck in the sadness about the reality we face, about the broken world we live in, the impacts of how a virus devastated my daughters brain before she was born, I’m trying to turn it around and be glad. She is HERE, she is a gift, and I want to be glad for what she is doing despite what the MRI shows and what that likely means for the future...though we have a good idea of what is likely...it’s not written in stone...The future remains unknown....nothing is for sure and we will do all we can to support her at having her best shot and to keep on fighting.

Hope is one of our greatest tools to keep moving forward. And if the things we hope do not happen this side of heaven..all the more to look forward to the other side..when Gods glory is fully revealed to us..and our daughter then is fully healed and restored. Until then we try to enjoy and appreciate what we do have..today. To be realistic and prepare for our likely outcomes, to not stuff our emotions, but to work through them and yet continue to pray and hope and celebrate the daily little miracles. 

A dream to long for: While I was pregnant I had a dream of Rory and Jed dancing and spinning together in a field of flowers as the golden sun was shinning upon them....She had long wavy blonde hair and they laughed as the twirled and played together. At the time I thought maybe this was a sign from God that he’d fully heal my daughter.. that she’d be born healed... now being told her walking or talking in the future is not in the cards and would be an absolute miracle.... I change my perspective. Though I still pray and hope for that dream to be a reality this side of heaven..(and know God can work miracles like that) I also know... if it does not happen then it must be a vision for what is to come once we are in heaven. Either way it’s a beautiful dream God gave me that I cling to and cherish. I strive, to choose not to be sad or mad (which is hard...sometimes daily) but to be grateful and joyful. So next time I’m sad and struggling to move past the emotion...I ask God and his people to remind me to keep moving forward and to “turn it around to something good” to look at it different. And I hope for you to do the same. 

Thanks: Thank you friends and family for hearing my heart and journeying with us. Writing has always been a healthy mechanism of processing for me and opening up your writing to others can be scary but it also can open the door for encouragement, love and connectedness. We are finding the balance in vulnerability and inviting others on the journey to learn, experience and pray with us and our family. There is a healthy balance and it’s different for everyone.

Prayers: Most importantly thank you for your prayers. We continue to pray for Rorys immediate needs..like this week still praying for her white blood cell count to go up and normalize...for less tears (we think from gas and tummy pain), and good feedings. For her to build the strength and tone to be able to take a bottle, for her viral load to decrease, for her to grow and stay healthy and protected while her immune system remains vulnerable. And we pray for her long term needs/development. That’s she’ll continue to beat the odds. That maybe my dream will be a reality this side of heaven..that she’d one day dance in a field of flowers with her brother laughing …talking…using her legs. We pray for hearing, for sight (not just with her eyes but that her brain can process the images despite the neurological damage) and for all the milestones ahead. Big prayers….praying for the impossible, the unlikely and the everyday little things that can be a big thing for her.

Mostly we pray for peace and for little pain and discomfort for her.....for healing, growth and just a lot of joy and love...for her and for our family. 

“And so we thank the Lord, for giving us the things we need… day by day…. the Lord is good to me” AMEN