What if...

What if a diagnosis doesn't matter?

That question hit me like a ton of bricks tonight. I am reading "Love Lives Here" right now as well and "Love Does" and with the yucky weather today I curled up and flipped between the two books.

I read the line in "Love Lives Here" that said "We often find our safest and most beautiful places where lava once flowed." and I paused... and that question hit.

The topic for next month's Complex Child is on rare and undiagnosed (its not a secret its on their facebook page). When the author call when out I thought... hmmm, I should think about that... and then reminders came and facebook posts and each time I thought about it but did nothing. Today at lunch my mom asked if I was writing for next month's edition and I joked that its a topic I know so much about but couldn't think of something to write. This is odd for me, as often I have to do my own sorting though stuff before I submit things because I have too many ideas and need to narrow things down first... but for some reason I was stuck.

The question "what if a diagnosis doesn't matter" is a jarring question when you are in the mist of applying to NIH, and working with several doctors on figuring out a diagnosis...

When a lot of the last 5 years have been spent actively searching!

I remember this time 5 years ago. Jilli had an NJ tube. It was causing ear infections. She had croup. I knew in my heart we needed the GJ tube surgery but I was struggling with the idea of them cutting my baby open without them knowing why. I spent hours upon hours searching for the why. I still read a lot about stuff.... thats wise... however its not wise to let it consume.

There have been parts of this journey where all eyes were on finding a diagnosis. Where prayers and late nights were spent around that.

Today on my way home from church I listened to the Annie F Downs podcast with Jon Crist which you would think would be a super funny podcast and it was but it was also super deep and SO good and one of the things we often do in life is live for the next thing... once I get a boyfriend...once I'm engaged... once I'm married... once I have kids... we are always living for the next thing and putting all of our hopes and dreams in that... but thats not where our hopes should lye because while all of those are great things they will never fill you up. I use to a live for the next event person, but I have noticed in the last couple of years that I am less focused on next whatever and having a reason to be excited for today. (funny thing... for a girl who use to put her hopes in the next thing... our wedding anniversary is this week... and I totally forgot until my mom brought it up at lunch today... lol! Its not that I don't love my husband, I do, very much! however the next big event isn't what I am focused on... however I should plan something nice for him... we have been doing this life thing together for a while now lol)

So I just sat here after that question hit... not sure what to think.

I have always thought that someday we would have a diagnosis but that isn't promised. It might still be in the future.

So I sat here for a minute looking at nothing... what do you do with that question. I have been wrestling versions of that question for a while but for some reason today it felt like a ton of bricks.

What steps do you take in light of that question?

And the answer I came to... we do the same things we are currently doing. We believe most of our paperwork is at NIH at this point however there is still a box that I can't get NIH to tell me if they have and the post office says it is sitting in a distribution center. We are in the 8 week waiting period... and then a letter will come and it will say one way or another. There will be no arguing with the letter, it either says we are going to NIH or not. During this time there is nothing I can do to speed it along or help our chances...

But what I can do is prepare my heart. I can prepare for the letter... either way that letter is going to be intense emotionally. If we go there it will likely be very emotional.

I sat here as I pondered this question and thought "do we go still if we are invited" and I think yes, we still go even if it is not for us. Even if it doesn't help us at all, maybe it will help someone else. Maybe we get to help be a piece in someone's journey... someone we might never meet or know about but God is working pieces together. Maybe it will help us on our journey... I'm not ruling that out.

But God is preparing my mind and my heart for the next steps of this journey. I can't even begin to explain how different I feel about a diagnosis then I did 5 years ago. Sure I still think it might be helpful however my hat doesn't rest on it... and neither does my heart. I use to feel like I needed that name to prove to doctors that something really was going on, but I don't feel that anymore (if you spend time with either girl you know without much guessing that something medical is going on... I often joke that we are a walking billboard for disabilities lol).

God has this either way.

God has always had this.

God isn't limited by medicine or labels.

A diagnosis or lack of one doesn't surprise Him.

We don't need to justify things to Him.

Bob Goff often says that Jesus doesn't need a lawyer... but I think we also don't need to try to be our own attorney trying to justify ourselves to Him.

So what if a diagnosis doesn't matter... I guess in the grand scheme of creation a diagnosis isn't a turning point... so we keep focusing on eyes on the one who is.