Not sure of a title for this post

Before you read this post it will be super helpful to your understanding to listen to the Unedited podcast episode featuring Annie F Downs... you can CLICK HERE to listen to it or find it on your phone in the podcast app....

In most of that conversation I am Cameron...

I think a lot like Cameron does about many of the things that are brought up.

I started listening to and reading Relevant in January of 2018... and then a few months later I started listening to Annie's podcast. I honestly stumbled upon Relevant. My dad, brother and I went to see Jon Foreman play last year and before we went I was looking for interviews with Jon to learn more about he project he was working on. Relevant interviewed him on their podcast and thats how I started listening... it was the first podcast I ever seriously started to invest in. Brent had been listening to podcasts for years, but I am more of a music person, however our commute to PT had just doubled in length each way and I suddenly had a large chunk of time each week in the car so my life led to more time to listen to things like a podcast.

I shared the podcast with Brent and it became our shared media. Brent and I do not watch many of the same TV show... he can't stand This Is Us and honestly most of his shows freak me out! After the 2016 election we watched late night shows like The Daily Show and Seth Meyers together... we bonded over comedy in what we felt like was an out of control scary time. But as we have gone farther out from 2016, its not that it all feels less overwhelming... but I don't care to laugh about it anymore... it feels too serious, so I stopped watching political comedy... except Last Week Tonight, because that talks about a lot more then just what is going on here in the US.

Since we gave up on most of the shows that brought us together, the Relevant Podcast became our shared thing. We make inside jokes about it... Brent got podcast merch for his birthday... it sparks conversation.

When Cameron started to release Unedited we decided to listen to that too. We have LOVED them... the one with the former head of World Vision was amazing... but this weeks episode hit in places I was not expecting it too...

and I cried...

I am not a crier...

I never have been...

It takes a fair amount for me to be misty eyed... to the point sometimes I have wondered if something was wrong with me. I feel deeply about justice but I am not likely to react with tears to a sad situation, I am going to react with action steps and a plan.

A huge self realization about myself lately that I feel like I always need to be the professional in every situation. I dislike asking questions. I dislike not knowing answers and I dislike not being able to help other people. I feel like if I don't know something then I can not help others. This is different then Brent's need to have all the knowledge in the world... he wants to store knowledge just to store knowledge, this is part of why I didn't care for podcasts at first because I watched his need to consume them to learn more and more with no real life application and saw them as pointless...

This explains why I do some of the things that I do... I need to feel like I am being taken seriously in situations. From a young age I struggled fitting in with my peers because I acted more like an adult... I am having a big birthday this year and I doubt most people I know would guess what age I am turning because I tend to already act like I am in that decade...

I was thinking about that the other day...

I remember being a teenager and dreaming about being in my 20s...

I will be honest... my 20s didn't look the way I thought they would... but not for the reasons I am guessing you would think...

Middle school me was not the popular girl... I was the awkward girl who struggled with school, odd health stuff and was taller then most other people in my grade. I was never the girl with buy band posters on my wall... its not that I didn't like music, I love music, but I never really cared about worshiping bands. I was never the girl looking at the teen magazines drooling over guys... I had too many other things too do... although sometimes that made me think that I must be broken because culture said that teenage girls drool over boys...

Which made me start to think that I was odd... and that because I didn't drool over boys that a guy would never love me because I was not like all the other girls (there have been TV shows that we don't allow Jilli to watch because we feel like they communicate this message even if it is subtle).

I remember the summer between middle and high school... I remember putting dishes away and paying that God wouldn't make me wait forever be to a wife. A huge motivation for this was my deep heart desire to be a mom. I remember pleading with God about this because I felt like it was something He was likely going to let me down about that... I don't know why I felt that way, God had not let me down in some huge way in my life. I had the pretty typical 90s middle class childhood. I was the odd duck a lot in elementary and middle school but the reality was that in the grand scheme of the world my life was pretty cushy.

God answered my prayer a lot sooner then I ever would have imagined... like a met Brent before school started. And God told me the day I met him that I was going to marry him... that totally freaked me out! lol... we haven't "been together" since that day, but this year we will celebrate our 10yr wedding anniversary....

As I was thinking about turning 30 I was thinking about how equally crazy it is that we will have been married for 10 years... For a girl who was pretty sure God was going to let her down about that... He most definitely did not...

But not everything has played out that way...


Here is a excerpt from my book... I have wanted to tell this story multiple times and I feel like I want to share it... now this is a short part that is not finished being edited so please read it that way, but this story feels pivotal to what I am going to blog about after....

"

My best friend, Jamie, is a worship director for an amazing church. We met in college when she 
led worship, Brent ran sound and I was in charge of multimedia. We had meetings in coffee shops
 with music all around. Honestly I found that more interesting then some of the classes we were
 taking; even with how many times our computer  with all of our slides and song lyrics died. Man,
 I typed some of those songs so many times!

Jaime led worship for a season of my life. A season I cherish a lot, however since college she went
 to leading worship at a great church that hired her on and Brent and I returned to attending our 
home church so Jaime doesn’t lead worship often in my life anymore. Big life events though have
 a way of bringing people together so one Sunday we drove up to her church. Jilli and Brent sat in
 the row in front of Lydia and I. We sang the words: You’re never going to let me down over and
 over and as I stood there I struggled to sing those words. But I wasn’t sure why it was so hard.

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 more then I can handle.

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 anymore 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.

Those song lyrics started playing over and over in my head again: You will never let me down.
 You will never let me down. It is not that God isn’t going to let me down in my view of things. 
There will always be things that do not line up with my views but the more I align my eyes on 
God the more I will search for His will. When His will is what I am chasing after instead of my 
ideas, I feel less let down. It doesn’t mean that is easy. I am still quick to think up my own plans. 
However, everytime I hear that song, I am reminded about where my heart should be focused.

I fully believe that God uses songs in our lives for a reason. I believe there is a reason different 
seasons in our lives are marked by different music and why music creates an emotional response.
 If we focus our hearts on God, we are able to hear what He is teaching us in each season. "

 As I listened to this weeks episode of Unedited my head kept going back to this part of the book. That ahhhh moment I had in the car several months ago... when I literally yelled at God while driving down the road and started to cry. How I have wrestled with some of these very thoughts that Cameron and Annie were talking about. I have struggled as I have wondered if I am praying correctly about the girls...

When Jillian was younger I pleaded with God for a name for whatever is medically going on. I remember so many drives home where I begged God for a diagnosis... and for money to pay for the thing she needed... I kinda tried that name in and claim it prayer... I went to an event in college that was all about name it, claim it prayer and I was rather skeptical at the time... but when you feel desperate, you tend to throw out some of your convictions. The more I prayed and the more my prayer was not answered how I wanted the more I pushed away from God... thats a super immature thing to do... and sure human... I would venture to say that everyone does it at some point on their faith journey.
However, God has taught me so much in that. He scooped me up out of that anger and hurt and showed me so many beautiful things... and for most of the past 2 years at least, our life has not revolved around finding a diagnosis.
I opened my heart about a lot of things... God has provided finical ways that I would not have dreamed about... I cried in the car yesterday as I opened a card from our church to help with some of the extra expenses that will be occurred in the next few weeks with all of our travel. NIH helps to cover a lot of things but we know there will still be some extra costs to things that will not be covered (like some of our food will be covered but not all of it, we will need to pay for airport parking, ect) and I had not told anyone, but I was nervous about what those extra costs would look like... and God took care of it.

God has also changed my heart about a diagnosis. I felt for a long time that our lives revolved around that. Our world came shattering down after so many genetics appointments where we left me no answers. Life revolved around research and tests and seeking out who could help us next. I remember being really angry with God that we did not have a name for what was going on by Jilli's first birthday... and 6 yr later we still don't have a name but what God did was work on my heart about the anger. I don't feel angry with God anymore about not having a name. My heart has been a lot more open and trusting of God the past few years... every step of everything does not need to go my way.. I can hold onto things with an open hand.
That does not mean there are not times of disappointment but its different... it feels different...

But here we are... about to venture many miles away for more medical testing and that brings up emotions and feelings and thoughts...

thoughts about the last 6 years...

thoughts about how I have handled things well and thoughts about times I have not...

I had looked into NIH a few years ago before our team suggested it but we chose not to try that option at that time because we were still in the midst of some things locally and we decided to peruse a second opinion locally. Honestly at that time we might not have been accepted... that we before Jilli's crashes and there was still more testing they could try here. She might not have been considered medically complex enough at that time...

But there was also a part of me that was so scared that what if we traveled to NIH and we came back with no new info... my hope all rested in a diagnosis so much that I knew that if it didn't work out that it would have crushed me to a level I was not sure I could handle... I'm at a different place now... I am not expecting this to solve everything and I understand that there is still a pretty good likelihood that we might come away from this with not a lot of new information...

However I am able to look at this in a different light. This is data collection. Us going to NIH might help us now... it might help us later... it might help someone else... I'm not sure but I'm not going into this trip about this being all about us. I might still be kinda bummed if we end up with no new information (we likely will leave there with no information and if new information does come it will come later... we have been told to expect to not leave there with any answers).

What I do know is that now my happiness and trust in God does not revolve around a diagnosis so I am able to go into this in a much healthier place mentally.

Listening to Annie and Cameron talk about prayer and their views made me think and debate... but it didn't make me cry...

This is where tears rolled down my face out of nowhere...

Cameron: "Here is what is messes up with the Christian publishing industry, look at this, seriously, objectively, there is an entire industry built around women having to share their tragedies publicly and writing books. Think about some of the biggest female authors, their entire thing almost writing about vulnerability and tragedy and painful things that they just have to put on the table for everybody, like its kind of messes up, honestly. Its particularly female authors in the Christian industry. Male authors can write about expertise and teachings, female authors have to bare their souls and air their dirty laundry and now we accept them"


Here is what you need to know about Cameron, he started, owns and runs a Christian magazine that has published books and his parents own a very large Christian publishing house. He is talking about this as someone in that business.


I don't honestly know why that made me cry like it did... I am not a crier and I typically don't cry about a line like that. I am normally more of the person to get mad... but not cry.

But I think once again it is about life season.

I have been asked by many people over the last 6 years when I was going to write a book and what pushed me to actually start was a lot of arguing with God and working on learning about how He speaks into my life. I was listening to a podcast one day and it was talking about how if something that is not something you would normally go chasing after keeps coming up in very random ways maybe it is God's way of trying to get your attention about something. Writing a book came up in very odd conversations with different people who did not know each other, and without me doing anything to initiate the conversation (honestly I was running away from having the conversation) last summer... until I decided that I should maybe stop and finally ask God what He was trying to say.

Once I started writing, I wrote the entire first draft in month. That is crazy. Then the editing process started. I wanted the book done and published before NIH because it is all about the things that God has taught me while we have been considered undiagnosed and I worried that if we went to NIH and got a diagnosis then the story would not have as much impact as if it came out in the waiting. Also, I really struggle with the fact that culture see that every story needs a neatly tied up story with a happy Hollywood ending the is the culturally acceptable answer. Sometimes people wait for things for a long time... and our culture sucks at teaching that there is beauty and lessons in the waiting and that life is not just about destinations. That finished products are not the only good things... that sometimes unfinished things teach us even more.

I have dreaded people talking to me about the book lately... because I don't know where it stands at the moment... I wanted it done before NIH... and then our fall happened which included more hospital time then I planned. There were more road blocks then I was expecting... and there were a few weeks in there that I felt so overwhelmed by the thought of finishing editing that I wanted to run away. In the midst of that I was listening to a podcast with an author and they were talking about how they wrote an entire book and then scrapped it and started over... at that moment I thought that was the meanest thing God could ever ask a person to do. I was angry at God for the person. However this person talked about the beauty in that. I couldn't see the beauty they were talking about and I prayed that God did not even think about doing that to me.

Over the last few months there have been more lessons that I have learned and there are things that I want to phrase differently. There is beauty in that.

But to be honest I don't know where the book stands right now and the biggest thing that scares me about that is looking like a fool to everyone... like Annie talked about her not traveling for half of this year and worrying about looking like a fool in December.  I'm still excited about it... there are still so many stories and lessons in it that I want to tell... but I just keep praying that God places one foot in front of the other.

But like I said at the start of this post... I want to come off professional in every situation that I am in and with book writing... I am not!

I worry about letting people down who have helped me with this project so far. I worry about what if it doesn't turn out how people expect. I worry that its taking longer that people think it should. I worry that people think I talk about it too much/too little (I still shy away from talking about it in person). I worry that God will ask something of me in this process that others disagree with.

Man I still care a lot about what other people think...

Maybe in this season God is teaching me to care more about what He thinks...

Maybe that is a lesson I need to learn before publishing.



Annie: "I don't have a friend that doesn't have a thing that they have asked God for over and over and not gotten."

Cameron: "right"

Annie: "what do you do with that"

Cameron: "the crazy thing is like then you look at Christians who have these perfect lives and you think well I've dealt with this disappointment and I guess I'm the only one."

Annie: "totally"

Cameron: "so like I can't pretend like I am because I need to be as faithful and as trusting in the Lord as the other Christians that are around."

Annie: "You have to muster up"

Cameron: "You have to fake it almost."

That section hit me hard too... I am not a fake it until you make it person... as odd as that sounds about wanting to look like the professional... maybe in some ways I am... but I can see in many ways that I am not...

I have written many time about struggling with the fact that we are a shallow culture that only wants the answer of "fine."

There have been times I have felt like even in all of our hard, our hard is socially acceptable, and there are so many people who have hard things that are not socially acceptable and they are shoved into corners, cut out, labeled... unloved... our Church has loved us though these past 6 years, but there are so many people that the global church pushes away...

But sometimes I still feel like I need to appear cherry and like an inspirational story to the world. I get comments from people that they stop reading a blog post if it starts and doesn't sounds happy or uplifting.

There are also days where I feel like I need to carry the weight of the special needs word on my back... like I need to help everyone, answer every message, problem solve every thing... and I love the opportunity that God has given me to love other people in the special needs world... I consider that one of my greatest blessings in life... but there are days where I feel like I have to have it all together for that community... like I need to be the perfect ambassador... write the perfect helpful post, make the right helpful facebook comment in a group, research everything for everyone, write the perfect book... and sometimes it feels heavy and I have been asking God more about what He is asking me to carry and what He is not and that is hard too... because I want to love everyone in the best humanly possible way and sometimes I am so guilty of not following the airline rule of putting the mask on myself first in my own life... I often see that as selfish. I see short how I fall short at loving people in the best ways every day... it weighs heavily on me.

But something God has been teaching me about is seasons. I am a person who sees everything as a forever thing and if something ends up not being a forever thing I see it as my failure... if I don't keep up with every person I possible could as much as my magical picture in my brain then I fail... it time and place move people apart and I can not keep the relationship how it was then its my fault... if I do not have the same opportunities all of the time then obviously I am not trying hard enough...

But what God has been teaching me about is seasons. How life is naturally seasonal and I need to be all in for the season I am in right now and love people the way He is asking me too... but that things are seasonal and there is beauty in that too. There are times that it is going to be my fault that things change and I need to own up to that and take the right actions not to hurt people and to love the best I can... but there are times where life is what it is and I need to not let it crush me.

There are also going to be things in life that are "not right now" or "pause." This is the first February in a few years that I do not have an article coming out in Complex Child and at first that was bugging me... like maybe I was not trying hard enough but the more I prayed about it the more I felt like God saying "not right now." I don't think He is saying never again for this... but I think He did say not this month... and thats ok. Maybe right now is a time I need to be working on filling up before I pour out more.

I titled this post "Not Sure of a title for this post" because really this has not smooth theme... its all over the place... likely isn't inspirational... but honestly what I would want to tell someone if they asked me how I am today instead of that stupid word "fine."

So here are some happy updates:

-We have flight info for our NIH trip!!!!!!! AHHHHH! I am so excited! I am still waiting for a couple more emails about some of the other travel stuff. I am one of those people who HATES feeling like I am bothering someone... I will go without something or do something myself if it means I don't have to feel like I am bothering someone but this is one of those situations where I need to get past that because otherwise this will all be a mess and not helpful at all!

- We had a great snow day today. We did school like normal but then we had a relaxing day of wathcing movies, playing with Lydia's GoGo smart wheels and playing super heros.

-Our heat is working again. We got a Nest several months ago form our energy company and the longer we have had it the more issues we have had. Saturday morning out house was down to 45*! On Saturday we were having to restart the Nest every hour to get it to work and it was only getting the house up to 60*. We decided to uninstall it and go back to our old thermostat and guess what... out house has been at 70* since!!!! Thank you Annette and Mom for trying to help fix our Nest. Also that you to the amazing Annette for taking care of our mail while we were at rmh... we need a new mailbox... a plow hit ours so that is something we need to fix during this freezing week...

-Our old oxygen company is supposedly coming this week to pick up the close to 40 tanks they have in our entry way! I want them out and am so happy that might finally be happening!

-We got new bags for our oxygen tanks. Our old ones had broken so new ones are very helpful.

I started the packing list for nih 😮

The two-nager after her bath

just a little snow

What the living room should look like on a snow day lol

checking off the boxes for our trip

Ever have those times where you have been waiting for something for a long time and the closer you get to it the more real it feels but also the more overwhelming it feels...

Thats how I am tonight.

I'm curled up in front of the fire place at rmh after a busy week of appointments... I think we have everything checked off of our list for heading to nih.

This week we got the medical clearance for traveling. We got Jilli's ear tubes checked out before the plane trip. Both girls got their feeding tubes changed.

Jilli is still dealing with the aftermath of the virus she had several weeks ago causing lower GI issues... we have her close to maxed out on laxatives and it is only slightly helping :( That has caused stomach pain all week and caused her to leave art early one night

I also had a phone meeting with NIH about as additional study they have asked us to participate in and also did the first on line portion of the study.

I emailed the travel office for NIH as we do not know any of our travel info yet. They thought they had talked to us already but they had confused us with another family. I am REALLY REALLY REALLY hoping they send us flight info on Monday... I am trying hard to not be stressed about this however it hit me today how soon this is and how little we know. My anxiety is starting to rise.

We have also dealt with more of a mess with trying to use the waver money... its not the waver's fault... the company we were trying to work with has given everyone a run around! Its been a mess and tons of emails and phone calls this week.

Tonight I am tired... tube changes went well from a medical aspect today but it was the hardest it has been from an emotional aspect on the kids in a long time. They both cried and fought it. It was hard emotionally for everyone. I honestly am exhausted after... its a weird kind of exhaustion that comes from medical stuff... its different... its hard to explain...


But something else I am is grateful...

I am in a place full of so much love!

And have been able to spend time with great people this week...

We started our time here by delivering 50 baby dolls! Plus a few friends gave us more once we were here!

A friend also left us the passys that Jilli uses that Walmart is clearancing out.

The girls were able to participate in art therapy multiple nights... and dance therapy too!

We got a lot of snow here earlier in the week. The girls lungs really struggle in cold weather but we were able to bundle them up good and let them go outside and play in the snow for a few minutes.

The girls also got to do gardening... Do you have a Mr Rogers in your life... not the TV show (Jilli watches that every night before bed)... but a real life person... Ann the gardener at rmh is the closest to Mr Rogers I have ever met. She is a sweet soul. They were supposed to be out of town for gardening on Thursday but once they found out Jilli was going to be at rmh this week they stayed and did gardening. Gardening was amazing! Jilli even read to Ann... Jilli's goal is to read all of the level B books we own this month... she is close to finishing her goal and she celebrated by reading to Ann.

Then last night we celebrated Christmas with the Smith family... we only have been trying for over a month but we all ended up with sicknesses... but last night we were finally all well enough to hang out. We had a great relaxing night. Kirk bought the girls pink unicorns that they can ride on!

Our PT looked ahead at the weather for next week and noticed how cold it is supposed to be and contacted me preemptively to check with me about moving our PT time since she knows cold like that is too dangerous for the girl's lungs to be outside in (just the walk between the hospital and rmh today was hard on them and we had them so buddled Jilli was convinced we over dressed her!). I love how much our team loves our girls. Our Special needs team also met with me today to personally deliver to me the travel documents we need for heading to nih... we met over coffee at the hospital... I was thankful that they took care of getting that all done after our appointment this week (the doctor had to meet with us first a write a letter off of that) and made sure I got it today so I don't have to worry about that.

Our friend Annette has been taking care of our mail all week... the plow hit our mailbox again... we have to fix that when we get home tomorrow because we no longer have a front part of out mailbox (and no door to keep the mail in the mailbox... I'm pretty sure the flag is gone too)... Brent also went home and snow blowed the other night and got a few things we needed from the house that nih needed that we didn't know they needed (info off paperwork).  

The thing that this week reminded me of is how amazing it is to see other people love and invest in my kids. Its amazing to watch people genuinely love my girls for them. I get a little misty eyed thinking about it. I am so thankful for the people who invest in my kids! I had several amazing people invest in me growing up, and I am so grateful for the people who invest in my kiddos.

So I am going to watch this fire a little more, just typing has helped release some of the stress I could feel I was carrying in my chest, which I'm thankful for. Plus its a Friday night here which means there isn't a dinner group so we need to find food... hopefully Brent and the girls had a good time doing a puzzle and coloring in the art room while I typed.

Here is what 45 baby dolls look like!

Jilli showing Laura her Disney photo book

doing the wishing well to go to the magic room

Jilli's toy from the magic room. She already had the mini American girl doll but they don't really make stuff for the mini dolls. Jilli picked this toy out of the magic room figuring one of her toys would work with it... to figure out that the mini American gril dolls fit perfectly! She LOVES this Mi World toy... Jilli has always been our kid who is great at loving toys that they no longer make (like her love of Bear in the Big Blue House)

Jilli has been working hard at pushing her own meds in this week! She is such a big girl!

Everyone reads like this right

She painted Tower of Terror

Jilli always says that it is not art until someone is messy

Big helper!

Jilli had never done melty beads before but she found this in the box of stuff at movie night and decided to get it so she could make a heart for Ann

It was hard work for her fine motor skills but she worked hard!

Lydia used a wipe to pretend to be Santa... she kept saying HoHoho

The girls had lots of fun playing store together

They laid down to block the wind from their faces

Anxious waiting for tube change

My typing view