If I could explain the last year in one word it would be
…uncomfortable.
It is hard to explain all that we have walked through over the last 15 months. After almost 7 years of terminal diagnosis, you would think uncomfortable was a very comfortable word for us.
But that is what is so different.
We are used to living the hard.
Waking up day to day not knowing if it will be met with death or life. Having two children with such severe medical issues living in challenging situations that push us to our physical breaking point, and then past it, is our norm.
The uncomfortable has been in all the other things.
The things that fill the space between tragedy and happiness.
A year ago God called me home from school. If I am honest, I didn’t want to hear Him. I was desperate for the rest, but I felt deep down like I was being asked to give up on Drake and Viv. If I wasn’t physically pushing the research forward how would we keep pushing?
I kept swearing Father was talking to someone else. How He finally got my attention is an entire story for another day.
The funny thing is, God does stubborn too.
I struggled with His direction.
I have been challenged over the years by a few well-meaning people in our journey if I was really called by God to go back to school. It was something I would struggle with when I was having a hard time with the load. I always thought back on the beginning as it was such a clear calling from the Lord. Despite what some may think, let's face the facts…no one willing signs themselves up for biochemistry while raising four children, one just diagnosed with a terminal disease, and pregnant carrying your fifth. I don’t care what kind of a saint you are, that is not a man made calling.
School was ridiculously hard.
Some days impossible.
But it all felt justified by the work we were doing and the doors God was constantly opening.
The first year and a half I wasn’t even “degree seeking”.
That meant I was there just for the knowledge, no degree credits.
I needed high level learning fast as Drake was suffering daily, and to even be able to get into those classes I had to have special permissions and then agree just to audit the class.
I had to do all the same requirements as my colleagues, even more so as I didn’t have base level teaching to build on. But none of it counted, it was just so I could have an ounce more understanding into biochemical pathways and try to trace the disfunction happening with NKH.
Coming home was comfortably uncomfortable…
God called me home because my home was hurting. My babies needed me and they needed our home to function as a home again. They needed a space that allowed them to find rest.
Our home had functioned as a revolving door for 5 years… shifts of family here to help, teams of nurses, OT’s, PT’s, Speech, Feeding….the most amazing support.
Nightshift, day shift, in-between shifts….
But in a way, it had turned to quicksand…
Eric and I had to come together and pray over a new path forward.
It was hard.
Uncomfortable conversations and new normals are hard.
Uncomfortable had to happen to allow for rest and regeneration.
For years I had personally struggled with so many in our home. It is hard to find rest when there are so many moving pieces. Satan would always fight for the space to keep the lie that “it had to be this way”… I struggled thinking Eric and I weren’t enough to care for all our babies at the same time. With such extreme needs, how could we possible care for all of them…alone.
Do you know Father is so, so sovereign and we can trust His plans for us.
We have been completely carrying the load, by God’s grace and shear determination to fight for each other, for over a year now.
Family went back to being family, nurses downgraded to seasonal,
OT, PT, and Speech are here and balanced,
and home became home again.
Work still has to happen, research and foundation still has to happen, serving the Lord on Sunday mornings still has to happen….Our days are so massively full…but it is worth all of it.
Do you know we even homeschooled our three bigs this year.
Yep…
And they thrived.
All the things I thought this horrible disease had taken from us… God is slowly making new again.
Today is another uncomfortable step.
Embracing a promise God gave us almost 7 years ago. A promise he orchestrated when Drake was seven months in my tummy.
Today is a step forward in the new, while embracing the current ground.
It has been the better part of a decade waiting for Father’s vision, given to us, to manifest itself.
It is learning to let go…. so we can let God.
Uncomfortable is hard….
Today I pray for the uncomfortable to become comfortable. I do not want to miss a moment…as the uncomfortable etches our path forward.
Pray for our journey ahead. Pray for all the things God is teaching us in this season, pray for our babies…all of them… as they are each amazing humans. Pray for stamina for Eric and I to be everything God has given us the privilege of being over. Pray for the mighty arrows God has placed us in charge of, and for the ones to come. That we are raise them to make an impact for the kingdom.
To God be the Glory.