This isn't how I thought this would feel

I will be honest... I have been in a funk since Tuesday. I walked into that room expecting nothing... I walked in assuming I would be crying as I walked back because they would tell me once again that they didn't know how to help... I have walked that walk so many times after genetics appointments. So many appointments that I had so much hope wrapped up in. So much fighting.
I don't think people newer to our journey understand how much of a fight Jilli's first year of life was. It was hard. It was a lot of fight for people to listen... I was told a lot that I was a first time mom (never mind that child development degree I have). I stopped sleeping for a while out of fear of Jilli vomiting in her sleep and choke and that by the time I would wake up it would be too late (mind you Jilli would vomit across the room in her sleep and start gasping for air, this wasn't an irrational fear). I kept getting told that she would grow out of all of her feeding issues (remember her NG tubes was placed and I was told it would be out in 2 weeks) and that she was cute and cute kids like her don't have genetic disorders (we don't see that doctor anymore and isn't employed anywhere that we get care but man I would love to call him right now...). I kept saying Jilli needed help but I kept being told I was over reacting (everyone on our team now says I wasn't over reacting and was wise and a dam good thing I was her advocate) but I laid awake many nights wondering if I was over reacting.

I have shared before that our prayer for the girls has always been that God use them for His glory. I would need to write a book to tell you all of the ways that has occurred and yet I still love the quote that says that God is always doing 1,000s of things in our lives at a time... we are just lucky if we have open enough eyes to notice 2 of them. There are so many things that He has orchestrated together that I will never know... and thats ok because it is not all about me.

We made a choice a long time ago after discussions between Brent and I that our prayer wasn't going to be for a diagnosis or cure but that God showed us the next step... but that came after a lot of heartbreak... that mind shift came after a lot of prayers that were not answered my way. That came after a lot of tears in the skywalk. I we realized that we couldn't live our life focused on a diagnosis because then we missed God in the every day and we missed what God was doing right then (side note, I was listening to That Sounds Fun podcast today, the episode with Ally Fallon and talked about that if our eyes are focused on other things then we make unwise choices chasing after those things... go listen ☺)

So for the last several years a diagnosis has not been our driving force in life... taking the next step has been. This is big for planner me who likes to have every step all planned out. I like to know what each day will look like.

So Tuesday felt a little jarring. It was just taking the next step like we have been... but this felt like a huge step... like the goal step for many people.

I honestly have felt overwhelmed that we are now at this step. A step I thought of years we desperately needed now feels sudden.

I feel though like feeling like it is sudden and feeling overwhelmed by it isn't how the world expects me to feel and so I have kind of shut down the past week. I feel like the world expects me to party right now while I am just standing here looking at a really big step we are taking feeling overwhelmed. I feel like the world would see this as a time to run faster ahead while I stand here nervous.

Part of it is that we have gone down many rabbit holes in the past 5 years. I was sure they would either have fixed whatever was going on or had a diagnosis for us by Jilli's first birthday. There has been a lot of frustration and heartbreak. And there was a lot of freedom in letting the control go of my expectations of a timeline. Honestly this all feels heavy right now like it use to but in a way that it hasn't for a long time. Maybe having a diagnosis is digging up a lot of hurts from this process and this feels very raw right now.

I rather suck at having grace with myself. I am a person who replays conversations over and over in my head. It am a person who sees aspects of my life that I feel like I should have together and don't and I struggle to have grace with myself in those areas. Brent was working on the bathroom yesterday and I was cleaning and putting stuff away from RMH and I said something about something needing to get taken care of and he mentioned how he didn't understand why that was such a big deal to me and I said that in my mind when everything else is chaos that I should at least be able to have that area off life under control. He laughed and reminded me that I have less control over the world then I like to think.
I am a person that doesn't like others to see that I don't have all of my ducks in a row. I am also a person who sucks at asking for help or accepting help (thanks for the side eyes during the sermon today mom). I like to look like I got it all. We are not a society that likes to look weak nor are we a society that values interdependence. There are noble things to struggle with but everything else you should just be able to handle. 

Today I don't have it all together.

Today I feel so many emotions. And now for some reason typing that sentence made those emotions decide they needed to well up in my eyes.

So instead of listing the three bullet points of ways you can pray for us right now... I am going to ask for grace. Grace while we process. Grace while I am sure these emotions don't make sense to people who are not in our shoes. Grace for the moments we feel like talking and the moments when we can't make words. Grace for the fact I have really been random at answering any communication at the moment... please don't take that personally... I am soaking it all in, know I see kindness and I am so thankful and if I don't respond to a text or message I am not mad or ignoring you, I just can't at the moment but know I am thankful for you and will likely remember your message at an odd time... most of Tuesday I didn't remember who I had talked to and who I had not and realized days later I had never responded to some people... but I ask for grace that people keep talking... keep loving us even in our mess. Keep being there.

I am also trying hard to not rush through feelings. I am really bad at that. I leave myself half a second to feel something and then feel like I shouldn't have feelings anymore... and while it is healthy not to live in a place of despair its also not healthy to not let yourself feel. I feel like since this conversation happened on Tuesday that by today I am not allowed to have any more feelings about it... that I need to be totally fine and should just be able to talk about it all in facts and logic today and I am frustrated that I have feelings and emotions... but I am trying to acknowledge those feelings because if I just push them away they don't go away. I am watching myself try to do that with this week... we have down time this week and I am finding myself trying to fill it because then I wont have to deal with some of the hard things... I can run away from the house work that feels overwhelming or the other things on my to do list... but I am having to remind myself that running away doesn't solve issues... I need to walk through this because walking through this is helping me learn lessons for the next step... its helping to teach me things I need to know and if I just blow right by I am going to be missing tools I need later. I need to do the work in this and process through stuff so we can take the next steps and there is a difference between working through stuff and dwelling in a place and working through stuff is healthy even if it means feeling for a little longer then my made up time clock.

I also think I made a lot of assumptions over the years about how right now would feel. It was rather idealistic. I can understand why people on the outside wouldn't even think that we might be having a hard time this week... this is what everyone has been praying for years for. But what I am being reminded again is that a diagnosis is just that... a diagnosis... its not a savior. I am hopeful this research study comes back with an answer... I really don't want to walk through it coming back inconclusive... while I know God would walk with me through that too, I am hopeful that we don't need to... but at the end of the day it is a name. There is a lot of value in a name... I don't want to downplay that... this still is a huge deal and we are SO thankful for this study, I don't want anyone to think otherwise just because of the emotions we I am writing about (another society pressure... one must not feel anything but complete gratitude... no complex feelings allowed). We are still in awe that we are at this point in our journey, that we are at this step! However I thought for many years that this step would feel differently then it does... it feels a lot more complex then I thought it would.

Today in worship we sang the lyrics below. And I cried (apparently tears are my thing today?! I am not normally a cryer). In this situation it has felt at times like God is hiding His plan... that we are left in the dark to wander and while I know that isn't true and that God is good all of the time, sometimes that is easier to say and have as head knowledge then to live by.

God is Good by Dustin Kensrue:

Even when it seems the answer's no
The promises of God all find their Yes
In Christ who worked the Father's will below
That all who run to him would find their rest

And even when it seems he hides his face
And darkness seems to be our only friend
We look to Christ who suffered in our place
That one day all our suffering would end

God is good, all of the time
All of the time, God is good
God is good, all of the time
All of the time, God is good

And even when it seems he pays no mind
We have a guarantee of his great love
In Christ who came and left his crown behind
That one day we would reign with him above

Lord, we believe
But help our unbelief
Lord, we believe
But help our hearts to sing

That you are good, all of the time
All of the time, you are good
You are good all, of the time
Your are good
Lord, you are good

If you were not near us in church today you missed Lydia worshiping... I love watching my kids worship!!!