Over a year long story

We have a narrative that has been playing out for about a year and a half and while I am far from seeing all of it, there are part of it that I can see, and see what God has done and is doing.

I wrote this over a year ago:

"I am not a feel-good Bible person. I don’t want to look at the Bible as just a self-help book and the prosperity gospel greatly bothers me. I get a little skeptical sometimes when people talk about faith with ultra rose-colored glasses. I worry when people are trying to make everything about faith feel easy. 

It wasn’t until a short time later I was in the car alone--which is very rare in my life--listening to a podcast and thinking: I feel like God lets me down all of the time...

I am a detail person. Most people would look at our life from the outside and think the big things are what I am talking about here but in reality, it is the little things for me that I struggle with. I really like to have plans go my way especially when I think I have thought up the perfect plan. It is the things like a doctor’s appointment not giving me the answers or some fun event that I want to do that falls through. Those are the areas that I feel let down. 

In that moment, I realized I was holding back a big request of God. I clutched it with a tight fist. I felt like there were too many little times that God had let me down so now in this big thing I wasn’t going to ask Him. I thought, if I didn’t ask and I did it on my own then if it failed it was on me and not God. I couldn’t have any more disappointments fall on God’s shoulders. 

As I wrestled with the darkness of what I was doing, I realized that God could handle me feeling disappointed. God can handle me being upset with Him. God can handle my frustration. God is no less God because I am mad. My emotions don’t change His character. The only thing changing was my thoughts and actions."

 



The thing I was talking about here was getting into NIH. And now on the other side I have wrestled a bit with "why did God let us go?" I did not want to trust Him at the time about asking to go because I was so scared that He would not be my magic genie in the sky and I wanted that so badly that I was scared to trust God because I felt like He could not handle me feeling let down by Him. While that is a whole lot of theological mess, thats the reality of how I was acting despite that fact that I would have told you at the time how I believed differently about God. My thoughts and my actions did not line up.

God let us go to where we wanted to go. And that situation has brought some good... and a fair amount of pain this year. This year has been different from the others. I am sure you can tell that reading this blog. I actually feel a little bad sometimes for the people who hopped in on this story this year because it doesn't sound as happy as parts before. This year has felt heavy.

But there is also so much that we have learned in this season. There are so many times where I know it was God providing because I could not. The way He has used people and resources this year blows my mind. We have wrestled with some heavy stuff this year, doubted ourselves SO many times... man I can't even count the amount of times we asked people this year if we were totally off course.

I was sitting in church this morning and my head was wrestling again if we made the right choice with letting an entire department of our medical team go... because I can be quick to think I was too harsh... but God asked us to go... that should be enough reason to do it, I shouldn't need a human logic reason to go with it. It might not make sense to everyone, especially people without all of the details of the situation, but I strongly feel like God asked us to... so while I was busy doubting myself again and searching for human justifiable reasons God reminded me that He is enough in this situation.

He reminded us of that this week... when NIH contacted us for the first time since we left (we have had some records mailed to us but no contact) and they were not offering us results but instead asking more from us. We feel like we have already given a lot... to people we don't trust at this point. The email exchange didn't feel good... I worked so hard to be professional and I felt like that was not returned. But God showed me again this week how if we had not listened to Him a few weeks ago that this week would have been harder. He had this!

Which is hard to remember in a situation that has felt very out of control. A situation I know I have not been perfect in yet one I know I have tried so hard in. A situation that I have worked so hard to parse out emotion and the best choices... so that I don't make choices based on emotion... but at the same point it has let me to get really hurt this year because I have plowed through stuff even when it hurt SO badly.

This Switchfoot song is stuck in my head at I write this:

I don't like to admit
When I'm wrong and need gifts
Of forgiveness instead of applause
I was dying to prove to myself
I could make it alone
It took years to confess
That your love was the best
At unraveling all of my pride
Had to laugh at myself
When I realized that you were my home

Give me the strength to let go
Give me the strength to surrender
Give me the strength to stop holding on
I've been holding on so long
Give me the strength to let go
And show me the way to come home

Yeah I'm stubborn and bold
But sometimes it gets old
Fighting voices inside of my brain
I was trying to pretend I was fine
When inside it was war
With the stumbling beat
Of my heart and my feet
And the faults of my failure and pain
To think all of this time
I had wings that were ready to soar

Give me the strength to let go
Oh love, light the way home
Light up my soul
I choose mercy instead of control
My life is on loan
Forgive and let go
I embrace a belief I don't know
What a beautiful sound
To lay your life down
Your forgiveness is where I am found
Here in your arms
I finally let down
I am lightning and you are the ground
Give me the strength to let go
I am lightning and you are the ground

 

 

In several podcasts I listen to the 7th year of rest keeps coming up. And at this point I don't think that is a coincidence. Jillian is turning 7 soon, but honestly my pregnancy with her was not easy either and this time 7 years ago I was having daily contractions (for 2 months!!!) and I think we are coming into the 7th year of rest. We are tired and worn and I have felt for months that my soul is crying out for rest. In the last month we have seen a lot of the key players in our medical team... and the all said see you in 6 months... rest and live life. They also set up a plan to try to help Jillian stay out of the hospital and we tried it for the first time this week and so far it looks like it might work! We lived for 6 years chasing down every test or doctor and begging to try any idea... and at this point we are at a place of rest... and that does not mean that those six years were bad or that in those seasons that those were not the right things to be chasing after... we didn't always do the chasing in the best way... but what we are feeling now doesn't mean we did it wrong the last 6 years, but it does mean that we are looking at this next year a bit differently... I am not sure what that looks like... sometimes rest doesn't come with a plan but it does need to be protected sometimes. 

Please join us in prayer for the next steps with NIH... honestly it feels a bit like the devil trying to disturb our peace and make us second guess God... we need to move forward with wisdom. 

Also pray for Lydia, she has been fighting a migraine since Friday afternoon that is really kicking her butt. I hate giving my 3 year old Celebrex for pain but sometimes it is at that point and that is how it has been for her this weekend. She has had some really good moments, like seeing some of our closest friends for brunch yesterday, but she has also had some rough moments like at Target today when she wore sunglasses and laid down because the lights were too much.