Revival

This blog post has been stirring in me for a while...

Here are two podcast episodes that influenced this post if you want to listen before you read:
http://www.anniefdowns.com/2019/03/09/episode-123-awaken-nashville/
https://kenoshafcc.com/resources/sunday-message (the July 23, 2019 sermon)


Revival... its such a church word...

And being a church kid its a word that I have heard all of my life and has touched my life in different ways. Its talked about in band names, church history and podcasts. Its seams to have times were it was a lot more popular then others and in my own life I have had times were it has brought me pride and times it left a sour taste.

In college I was a part of a college ministry that in part grew because of the crusades of the 50s as a way to follow up with people after those big tent revivals. My time in college in this ministry is such a treasured time of my life, sure I learned a lot in school, but I think I learned the most from being in a relationship with with my friends as we had late night talks about God. I almost went to a Christian college, but changed my plan after my freshman year and for me I am so thankful. I am not harping of Christian colleges here, but for me the church girl, a liberal arts college with a really strong faith community shaped my life in ways I never imagined.  

A while back I was struggling with some women in the church that likely have no idea that I was struggling with them because they don't know me... nor do I really know them however I was mad and hurt after a couple of situations were I felt left out and excluded. I've gone to my church my whole life and it stings when people who ignore you act like you are new because it makes you feel really unseen. Like I've been here week in and week out for years and I am not asking for accolades... but just don't make me feel like I don't belong because there is a new popular moms group that has made zero attempt to be accepting of my kids. I joked with a mom friend who was a part of the group but was watching how I was being treated that the new mom groups come and go every few years and some of them stay and continue to be friends as their kids grow up, other people move away and that causes shifts in social circles, and really sadly sometime they fall apart because they were never about Jesus but were a social club inside of a church that couldn't sustain when things got hard. Joking about that with my friend was not the kind and loving thing, it came from a place of hurt, and a place of being in a church for 30 years and seeing the cycles.

As I was sitting in church one day I sent this friend a text saying that if I was not willing to pray for the women in my church for revival then how could I have kingdom eyes... this text wasn't really about the situations that had stung but more about my heart and my response to those situations. I wrote on my bathroom mirror "Let revival come, let the people pray" which is inspired by the bridge of the song Come to the Water by Passion which says "Let revival come, Let the people sing, The glory of Your name, All over this place we pray." Those words have been on our bathroom mirror since as a daily reminder to me. It reminded me the day where I was invited by this same friend to something and I wanted to put all my walls up and I walked into the bathroom and saw those words and knew that sometimes the next step for revival means doing something that feels uncomfortable even if it seems trivial.

But the months went on and I would hear the word revival and started to not love it and there is no pinpoint to why but more of a cynical about it because revival started to feel shallow. Maybe it is because I looked around and so much of everything felt so shallow... life just felt like it looked like busy people running around looking out for themselves living shallow safe lives... the reality is that I was trying to do that too while longing for depth but scared to have it. I have a friend who lives in a neighborhood currently that is kinda picturesque with little shops you can walk to and plenty of fun places to eat and every time I drive though the neighborhood I find myself drawn to it but also wrestling with the fact that I had a placement at a school that was also within walking distance, just walking the other direction, that was the poorest school I have ever worked at. So many children in too small of a room with little resources. The picturesque and the place the people run from so close together yet worlds apart and I can feel the battle in my own heart about it all. I want to think I am better then these people in the picturesque because I would feel like I am deeper then they are but yet I would also want to run from what felt like instability of the rougher area... I an outsider who didn't fit in either but judged both.

I was doing a devotional and praying this morning and something I felt really convicted of was that sometimes my want to call people higher and deeper stems from the American mindset that other people are lazy. This thought of the other is so pervasive in our culture... that others don't work as hard or think as deep or care as much. Sometimes that causes me to throw temper tantrums that others are not helping others enough or loving enough... and there does need to be pushback to our me centered culture, especially the culture that is rather close handed with love and resources because they have such a small view of God that He could not love everyone therefor we spend all of our time asking who our neighbor is and never actually doing anything except maybe helping our own sometimes... but judging everyone as lazy in their compassion while I judge them for judging the people they call welfare queens doesn't do anything but leave us all bitter and angry.

I look at my generation and everyone says all the time that we are a generation that seems hungry. We are not a generation that is just good with a Bologna sandwich on Wonder Bread, we joke that we like our avocado toast and our craft bear better, but its true that in many areas we are searching for something deeper.

We don't just want the tent revivals that you leave feeling part of a club, as we can see through clubs, we want depth, relationship and connection. How do we build?

This weekend was a big one for our church. Our minister of 40 years retired. He and his wife have poured into my life for my whole life. Growing up our ministers were not put on some high crazy pedestal, sure we were taught to respect them, but we were also taught that they were people. A lot of people came into town for the celebration and on Saturday night some people gathered at my parents for pizza and I laughed after when I realized everyone who came were former misters of our church and there was nothing weird about that at all. They are people that I deeply care about and there is no show there based on their profession but instead genuine relationship with one another even if we are only together every few years at this point... the church unites us.

I was not at church on Sunday because I had made plans a year before to go to something that morning but once the party was planned I decided that I would do the morning plans but make it back in time for the retirement party. As I drove I listened to a podcast from months ago that I had not listened to in the crazy of our spring. As I listened it talked about recognizing the people that had sown the seeds for years and the fruit that we are seeing now because of those sewn seeds.

I started to cry as I thought about the retirement party that I was headed to and the seeds that these people had sown into my life over the years. The musicals, Sunday School class, hospital visits, and help in everyday life that our minister and his wife have very lovingly sown into my life. These are the people who would always ask how we were as kept up with us even during the times when I would feel like an outsider in our own church because we were gone so much with medical stuff. How do I do that for others? And I know loving our family both the 4 of us and my whole very large extended family has not been easy or fun somedays yet we were loved... how do I spread that not our of a works mentality but out of a service one?

Sometimes we can be so quick to want to squash the things people have done before us when what we are called to do is prune. We can be quick to take credit for the things that are happening now without any thought of the people who planted in the first place.

I feel a stirring happening. I feel it happening in me and I talk to friends who say they feel it too. I feel like God has some revivals coming but how do we help to make it deep. The podcast I was listening to said that every church dies... the one I attend is around 90 years old and while I hope with all my heart it thrives and God does more then I can ever imagine with it in my lifetime, that line struck me because I had not thought about that before. So how do we make this deeper then butts in seats?

Because the cultural things that came out of the crusades of the 50s feel cheep to this generation... we really don't care that money says "In God we Trust" nor do we care that "One Nation under God" was added to the pledge because those things feel shallow to us... they feel like a cultural Jesus puppet show that is meant to look like we have it all together but to my generation it feels like that was just a whitewash where people took the name of Jesus and stamped it on culture and called culture Christian. We look around at some of the people who championed some of these things and we see right now how some of them are not very loving or kind.

So how do we prune revival? How do we stand on the shoulders of those who came before us and see and respect their deep want to bring more people to Jesus? How do we help people see the real Jesus and not the white American culture one because people are so hungry for the real thing! How do we look at the seeds that were planted by every generation and help to tend to those and plant new ones for the generations after us? How do we set this up to love the next generations well? How do we be mindful to not become prideful when revival comes and take all the credit for it instead of thanking God and the people before us? How do we get our hearts and minds ready now while things are string to be in a place to love people well? How do we set this up so it doesn't just become another round of culture wars that kills people's faith... culture wars can feel holy but I think are a lot more of man then God... how do we prune and treat now to prevent those weeds from popping up again? What work do we need to do now so this isn't just a formula because the longer I am a Christian the more I see the formulas rarely work out in the long term... currently it feels like the Christian world is in a bit of unraveling with formulas that we have been so tied to for many years but maybe God is asking for His people back from the formulas that try to box Him in? How do we pause and take mindful steps but yet not become frozen in the overwhelming of the work? How do we not sell ourselves to side projects but yet don't get so focused on revival that we miss the keys parts of it like justice, compassion, love, serving each other, and caring for all... not just those in the tent with us. How do we remember to love even when people push back? How do we remember this isn't a battle against each other?

My mind is swirling with questions.

And the best place then in prayer.

And then in conversation.

And then in actions.

My bathroom mirror

I was a lucky one

I always grew up with this imagery of God in my head that he was like a giant father sitting in the clouds waiting for me and when I would come to him in prayer I would sit on his lap and He would wrap His arms around me and listen while I talked.

I know for many people that is not their first view of God.

I am a lucky one here... I know...

Sometimes the analytical part of my brain would kick in and I would wonder about how He deals with so many prayers at one time... I wondered if it looked something like a call center. I couldn't wrap my head around Him being awake all of the time.

But when I would pray I would still think of Him like a father in the clouds.


Until at somepoint I didn't...

I am not sure when... the why is unanswered prayers...

Which feels painful to admit because it feels so childish...

And it might have started with unanswered prayers about me but it really spiraled when I felt that He wasn't coming through for other people... but also not taking into account other people's actions in those situations.

While I still learned about God all the time, could hear Holy Spirit speaking into my life, and prayed...

it felt different...

It didn't feel warm and cozy.

And while not everything in life is always going to be warm and cozy and there are going to be times you are mad at God... my heart was longing to curl up in His arms and rest. Thankfully there were little times of that throughout the seasons, but times those times felt so spread apart.

Tuesday night I sat at my kitchen table talking about God with a friend... something I don't do enough... and talked about the things I feel that He is saying right now... and how I was having a lot of anxiety about it because I felt like I was taking circumstances and trying to prove if God's word was true based off of those instead of knowing that God's word is true and testing circumstances against that. Man just saying outloud that I was struggling with that was so freeing.

This friend and I exchanged birthday gifts and she knew we are trying hard to downsize our stuff right now so she knew I didn't want more things to fill the house... so she bought me some of my favorite foods... a devotional that really ties into some of what I am wrestling with and a shovel based off my blog post about how 30 should come with a shovel.

I was listing to That Sounds Fun Podcast this week and they mentioned 1 Corinthians 1:3-5 which just tied so many things together for me in this... that sharing that hard stuff is worth it and needed for the kingdom and that loving each other is so valuable!
I think I might write that verse on the shovel...

1 Corinthians 1:3-5:
 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, ⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. ⁵ For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.


So this morning as I started reading the book I felt like I curled back up in those familiar arms... rest and comfort

I had a great Childhood

I was in a Twitter conversation the other day and people were talking about their church upbringing  and someone tweeted that someone should write about growing up in the Evangelical culture and being ok now.

I have attended the same church all of my life and for my family it is a generational church, my great great grandparents attended there too. This isn't a small community situation where this was the only church in town, I grew up in a town large midwest suburb with plenty of church options.

My grandfather was the church janitor for about half of my life. My dad has played guitar in the worship band since our church started a contemporary Saturday night worship service in the mid 90s and now serves as an elder. My mom has had her hat in so many different things from directing plays to teaching preschoolers and teenagers.

I grew up in the walls of the church. Sometimes very literally. When I was in upper elementary school our church built a new building and to help save money people from the church did a lot of work which brings funny stories like the toddler toilets being installed first and there being an issue with the bathroom dividers so for a little while it was just a large open room with tons of toilets. During musical season many nights of the week were spent at church rehearsing, putting on way more stage make up then I was allowed to wear at home, and baby sitting cast members children.

I was the teen who was at all the events. I started running slides when I was in fifth grade and when I transitioned to the teen service I was in charge of putting together the weekly Power Point for service. I went to church camp, stayed up in tons of lock ins, traveled to another country on missions trips, participating in a True Love Waits ring ceremony, and was there most Wednesday nights. I started teaching the 3 year old Sunday School class when I was 12 and continued to until I was in college.

I had the quintessential Evangelical up bringing by many of the statistics.

There are some things that looking back I can see left some scars in my life. I watched people leave the church over music styles. I heard the fights about baptism. I now really struggle with the purity culture, not because I rail against everything that was, but I know I came out with some scars from it that still effect me in ways that are not healthy. I love the church so these situations deeply hurt when friends would leave or splits would happen.

In the last few years I have become more vocal about some of my wrestle with the American church and some of its choices right now. I struggle with who it is pledging its allegiance to right now because it often doesn't feel like Jesus at the moment. I have been critical about many things that I feel like we are really missing the mark about and watching church fights of the past has always showed that when there is disagreement in the church that people have to leave which has made me really wrestle with a lot of my up bringing and what I currently believe. When people you go to church with post of social media that if you don't hold the same American values as them then you must not be a Christian it can feel very personal and like they are trying to lower your deep love for God based on American values. It all feels so personal. Its reached as far as a church member saying that we didn't need to have our church follow ADA because Trump said that churches are not going to be persecuted anymore into following laws that make them do things, I understand that churches are excluded from ADA but as a mom of two kids with disabilities this situation was so painful because this person was using Trump as a reason to not love and exclude people like my children. The past few years have been rough in a way my childhood was not. 

This weekend we had a celebration for one of our ministers, he retired after ministering our church for 40 years. The celebration brought a lot of people into town who had moved away over the years and I was lucky enough to get pizza with a few of them. We settled in like family because we have been for years despite DNA and caught up about life with each other. We joked about old stories and talked about what is going on in our current churches.

Before this event was planned I had already promised my daughter to take her to an event on the same day with a friend which meant we would be missing church on Sunday morning with all of the people from out of town. I was happy with the event we were going to and knew it would be a good time a friend. My heart however felt sad to not be worshiping with these people that I do not get to worship with often anymore. While we are at church most Sundays, we do miss sometimes, but I can't think of the last time my heart felt so sad to be missing church.

I think its that I looked at all of these people who are like a timeline of my life all tied to my faith, ministers, Bible study leaders, friends and all I could think about was how much I loved them all and how after all these years my heart still longed to be with them. Sure there are stories of frustration, hurt and anger that fit into this timeline, but there are so many more stories of the beauty of the Church.

High school me dressed for a musical

Its my birthday and I'll blog if I want to

30

I remember always wanting to be in my 20s but as a teen/college student I never dreamed of my 30s. Not for any dark reasons or hopeless reasons... unless something crazy happens to me before midnight I will be 30... but it was not even until the last month or two that I really even realized I was turning 30... like I knew  I was 29 and I know how to count but it was not some huge life goal for me.

I use to always live life waiting for the next... next event, next life change, next fun thing, next purchase, next...

I would get sad as an event was ending because I was living for events.

It can be one of the reasons I can be great at filling a calendar because I like there to be a next.

And while my brain is still wired that way it has changed over the years where the next does not run my mind... there does not always have to be some big next, I am content with living life and knowing that living life is enough... life is a journey

Sure that includes making intentional steps... we want to sell our house... so I spent time the last two days purging things... but living with intentionality is different then living for the next exciting thing. It means you line up your life in ways that are helpful and take steps you need to take but it also means that you are ok with where life leads you. I don't need to have the next 20 years of life figured out right now, what I need to do right now is make good holistic life steps, steps that lead to healthy things and sometimes those things will be in specific directions and sometimes those things are to make me a more loving person and trusting that will serve me well in whatever step comes next.

I listened to That Sounds Fun podcast today... the episode with Ben Rector and he was talking about how his advice for him in his 20s was different then his advice for himself in his 30s and I see how true that is... there are things people older then me would say about life when I was in my 20s that didn't feel true to me but as I have gotten older make more sense, I get where they are coming from at a different angle... 20yr old me needed to be thinking about different things then 30yr old me and thats ok.

But here is the thing that I can tell you here on the night before my 30th birthday... I am happy. There is no looking back at past parts of my life and wishing I was back there... sure there are people and place that I wish I was closer to... but I am really happy with my life season.

Content normally gets a really bad wrap... but for me it is the best word to describe this season.

I am a mom which was a dream of mine since I was a toddler. I am a wife to an amazing husband. I have friends who support, challenge me and help me grow.  I have family that is very there for me and on my side (wink to my little bro this week... he knows why lol, he had my back from miles away)... my mom has spent the last two days helping me with purging. 

Sure are there hard parts of life... yes but there are always going to be hard parts of life! That is life... you can either always live waiting for a different tomorrow or you can live today! I choose today even when that really confuses people.

30 for me is not some big scary mid life thing... its just the next steps and in the midst of lots of steps. It just is.

So here it to the next chapter... I learned SO much in my 20s... I am truly thankful for them... they brought me two wonderful kids and some amazing people... there are many things about me that changed in my 20's and some things that stayed the same and I grew in. They were a gift.


When I thought about writing this post I worried what others would think about me writing a blog about myself (I know, how 9 of me lol) but its my birthday and I'll blog if I want to... it is my blog after all! Maybe in my 30s I'll continue to grow in a healthy balance of what others think of me... although growing in that sounds scary 

The next few days are going to bring a lot of fun! Tomorrow I am taking the kids to a children's museum, Friday my parents are taking me to my favorite restaurant, Saturday I get to see some people that mean the world to me that I didn't get to see much in my 20s, and Sunday my friend Sara and I are taking her daughter and Jilli to something that sounds fun and crazy and then a retirement celebration for someone who has meant a lot to me my entire life, oh and Monday we are helping with a fundraiser for the hospital! It is going to be a crazy few days but I am so looking forward to it! The difference between 20yr old me and 30yr old me is that 20yr old me wanted the reason that people gather to be about me... 30yr old me is just thankful to get to spend time with people who I love no matter what that looks like and why people are gathering... it does have to have anything to do with me.


Here are a few articles that I posted on Facebook lately that I found interesting and I know that often Facebook doesn't show everyone everything so I wanted to post them here too...


https://themighty.com/2016/08/undiagnosed-chronic-illness-why-i-want-to-find-something-wrong/?fbclid=IwAR1K2xTgMWe4LvEiKhwzLBnCy29nl8fRm5PLStQIO32jJw7bnV-v96WdvVQ

https://slate.com/human-interest/2019/07/willow-creek-church-evangelical-teens-grow-up.html?fbclid=IwAR0RWL_GZ6OC5InjwKsbUOmUM1SkiW8AcKSxd9uwr9Uu-MJnNeSvLtqsXXw

https://themighty.com/2019/06/parenting-medically-complex-child-when-do-you-fight/?fbclid=IwAR1D775n-ax6hyeSIwxRZxPthmhJpHeeMUhB_WV9iv-swY2yyVlNcPKyLrs


My favorite thing to eat these days is going to the store and finding whatever vegetables are on sale and cut them up and throw them in a pan with some cubed chicken and cook them and then mix in some poppyseed salad dressing and serve it over rice... Brent doesn't like poppy seed so I make his with wing sauce. Super easy... super yummy and reheats nicely... healthy and easy!


Best thing I have heard all day... Lydia asked Jilli to play... Jilli always wants to play with Lydia however Lydia isn't always the kindest in playing and Jilli can get sad easily when Lydia is involved so listening to them playing Peppa nicely together while I type is amazing!!!

Also, thank you to my mom for giving birth to me 30yr ago... she and I both didn't handle child birth well (I decided I needed to flip around and get the cord wrapped around my neck and it got very scary very fast) but I am so thankful for all she and my dad have done for me over the years!

 And because I am always thinking about some odd angle of something tonight my head is pondering...

How did American exceptionalism turn to mean that you can not say anything bad about the country while still having a view that we can not do many things. America isn't hopeful... its people really don't believe in a brighter future anymore... we believe in preserve as much as possible because everything is falling apart but that is a very different mindset and enternal motivation then we have had in a country as a past. How did we end up in a place where you are not allowed to say anything bad about the country as a whole (if you do right now you are told to pack your bags and leave?!) but when people advocate for working together to find solutions to improve things we are met with the argument that we as a country can only help some people... that our hands are tied in loving people... we are the richest country in the world! Things just don't add up here. Part of it is that we are ok with con men and corporate corruption because it offers a false sense of security so we are willing to buy the lie to keep the money in some hands that only some people can bed fed and have roofs over their heads... we have collectively bought the lie... but where did hope die? When did we become about only helping ourselves and our people? I know history here so I know this isn't new its just at a peak in my lifetime. It also feels hard because my generation was raised to ask questions, help each other, include everyone, take care of the world... which are all the things the grown ups in our lives taught us but now we are 30 and feel like all of these people are angry at us for turning out exactly how they raised us... like the generations before us believed at one point that the world could be better but now lost their hope but are mad at us for fighting for it. Sometimes being a Millenial is very confusing!
My honest thoughts on that... the American church is hopeless... I saw a post today by someone saying that we have now entered the great Christian persecution and I just sat here confused... do we not remember that there have been times in the last 2,000 years that Christians have literally been used as human candles to light up parties in Rome? The American church has no hope. It sees everything as an attack and that God isn't big enough. It sees every person that doesn't fit into their mold as a threat instead of a person to love. It doesn't think that God's word can be spread in any way that doesn't look the white way. The American church acts like the sky is always falling. Why did we give away our hope. Want things to change... we need our hope back... but its not going to come back by spending all of our time whining that life isn't fair from our air conditioned gated communities. Ps: hope also isn't created by calling others names all the time.
God is big... He has endless love... we don't need to dig in our heals and protect baby Jesus... He isn't in the manger... He already defeated the devil... lets stop getting hung up on culture wars that push people away and instead just do what Jesus call... love people and bring His light and hope to the world. You can fight for prayer in school all day but if you don't have love you have nothing and the fight will fall ill... right now we don't even tolerate our neighbor... can you imagine what Jesus's radical love would do if we followed that instead?


My dream birthday wish... a magic wand that organizes and purges things from the house... I am currently looking at the living room that is a mess... that I cleaned yesterday but I spent most of yesterday working upstairs so the kids played in the living room and it looks like it... one are clean and another a mess!
A fun thing that I would love to do in the next few years is go ride roller costers... this is something people might not know about me... I love Disney (that is known) but its not the movies, its the theme parks specifically theme park history... I collect Disney retired attraction pins... but while Disney by far is my favorite theme park and what most of my youtube subscribed channels are about... but I also love to learn the history and details of roller coasters... weird I know. I go to sleep many nights learning about roller coaster history... but for as relatively close as we live to a Six Flags I have not been there in 10 years! We had talked about taking a trip 7 years ago with friends to hit the biggest roller coaster parks in the country but we very happily found out we were expecting Jilli instead so we called off that trip. When we went to Knotts as a part of Jilli's wish trip I got to ride one big roller coaster but that is all I could ration as time away from the kids and since we were there on a week day in March only half the coasters were open and the two highest rated ones were closed so the lines for the others were really long. Six Flags tickets are really expensive though and just not something that I could prioritize money for. It is also not somewhere that it makes sense to bring my kids who don;t handle heat, over sweat, and their disability services are very lacking especially for oxygen... someone offered to take us next month but required that we take the kids too and there is no way I would ask my kids to go deal with that kind of torcher and there are too many other things that I have to advocate for right now that trying that seems like an unfun day for everyone... so despite my want to ride some cool coasters... I love my kids more... its not a sad thing or a pity thing... it is a "it is what it is" thing... but my goal in my 30s is to get on a larger coaster (I like Disney coasters but they are different).

So onward to 30. I am hopeful and happy. Situations and circumstances frustrate me at times but life is good! 

Facebook has been asking me for days to set up a birthday charity fundraiser and while that is a great idea... I can't just choose one place! There are too many non for profits that mean a lot to me so if you are one of those people who likes to donate to one of the birthday fundraisers here are just a couple of places I love:

• Ronald McDonald House
• Tubie Friends
• Gracie's Gowns
• Tiny Superhero
• Make A Wish
• Never Say Never Playground
• Preemptive Love
• Little Lobbyists
• Sing Me A Story
• Bows For Brynlee
• Kade's Klassic 

I am also excited to spend this year at home! Many of my birthdays have been spent with Jillian either in the hospital or at RMH and while we made the best of it and rolled with the punches like we do... this year home is fitting with everything that is going on medical wise right now. Jilli's body was being a little weird the other day and I told her my goal was for a calm birthday and she said she can't make any promises from her body... we laughed... its true... we have hit the point where we are ok with lots of things, if things fall appart today and we end up there, it is what it is... however our goal and our plan (and the way things are looking) we are going to be home for this birthday and I am appreciating and savoring that!  

Taking a pause

This week has been a rough one emotionally... from waiting for a genetics appointment for a year and them last minute canceling to our big meeting... this week was heavy in many ways.

First genetics canceled... they said they had nothing to talk to us about... I said I had things to talk to them about though... they said they want us to be seen in the new outpatient clinic our hospital just started for medically complex undiagnosed kids. This clinic was born out of these meetings called Nelson's meetings which we had over a year ago where many of your doctors plus lots of other doctors in the hospital sit around a table and talk about your case but you are not there. This clinic is now to follow up after those meetings. I don't know a ton about what the goals of this clinic are, but genetics would like us to be in this clinic... but they didn't get us set up with this clinic before they called me which really made me mad! I asked about the research study and they said that yes we are enrolled however they would not/could not tell me if a researcher has picked up our case or not! Genetics has just been a frustrating specialty for us for 6yr and sadly that is continuing.

The other big thing this week was our big meeting. A lot was talked about there, some of it I am ready to talk about here, and others of it I am not. The big take away is that we are currently putting a pause on all medical testing that is not immediately needed. Our kids have had medical testing almost their entire lives. Some of this testing has been very invasive. Some of it has had some rough side effects. Some of it, like NIH was very challenging mentally for our kids. While medical testing has been a needed part of our lives to try to figure out the best plans for our kids, it doesn't come without risks and costs. If we are doing medical testing that means we are not doing something else. Thats just how life works. We are all tired and weary from medical testing... we have given it our all of 6yr! We are at a point where we have plans for many of the things going on that are working to some degree so we would like to take a breath here for a little bit.
I often joke that our lives are like whack a mole... that we treat symptoms as they pop up. Currently though we are at a point where we have tools to pop most of those moles into an ok place... it doesn't mean that we are not daily playing the game and that sometimes things surprise us, but it means we have a toolbox that we are able to use to help a lot of different things. And we know when we need to get help from the hospital for the ones we can not do ourselves.
A friend asked me yesterday what I wanted this pause to look like and I said that I wanted it to look like a time where my kids can do kids things and make gains in kids skills.
When we told Jilli this she was upset because she thought that meant that we wouldn't be staying at rmh anymore but we explained to her that we still will have all of our normal appointments just not testing that then she was really happy.
This isn't a pause forever but our goal is for the rest of this year. That will make our year look a bit different and that feels a little weird right now.
The only thing we are testing right now is that the first week of September we are giving Lydia the MMR vaccine. Jillian's body really struggles with vaccines so her ped stopped them several years ago. Because of Jilli's struggle with vaccines, Lydia has not had any... however because of the current resurgence of measles and mumps we are having to have some hard conversations about this and have agreed to give Lydia the MMR to see what happens. We are meeting with an allergist and doing this in an allergists office and then will be staying at rmh for a while after as her body makes immunity.

There are still some long term things that we have different views on that we are still going to have to work trough which feels hard. There are still some things that we have fundamentally different views on and that feels challenging but one step at a time. We have a short term plan though.

I sent a message to our GI doctor and she agreed to the pause in testing as well.

Thursday night we came home from RMH after a week and a half there. Yesterday we took a day to care for us. In the morning the kids and I just chilled. The weight of medical appointments hit differently once we get home. It hits my body at home. I often feel horrible the day we get home from rmh after emotionally challenging stays because I live in the tension of my body and mind needing to put the pieces back together and wanting to be productive. Often on this first day home I have little grace with myself because I want to get everything unpacked and the house clean but my body is very slow and tired. I often beat myself up that first day home. But I am trying to learn to have grace with myself. To find small things that I can accomplish while still giving my body and mind time to process. In the midst of being at the hospital your body is good at making adrenaline to ride you through it all... once you are home the adrenaline lives and you have to process everything.
Last night Brent and I also went out with Jaime and Jason. When we were in college we would all go out together and we have so many memories of really fun nights but life changes once you have kids and nights out are a lot harder. For Christmas Jaime and Jason gave us the gift of a night out the 4 of us like we use to. Our year has been crazy with medical testing and sickness (we have only spent about half of the nights this year in our own beds...) so we have kept having to put off our double date night... but we put last night on the calendar over a month ago and were very protective of trying to keep it. Jaime turned 30 in June and I turn 30 next week so we went out the 4 of us for Christmas/birthdays! It was a really fun and a great night out. I actually drank a martini! Brent often jokes that I am a prohibitionist... its super rare that I drink... in fact Jason joked that he is not sure if in the about 10 years that I have known him if he ever remembers me drinking before... but we went to a fun restaurant that had fun drinks so I tried an espresso martini... liked the front half taste of coffee, I didn't love the back end taste of alcohol. I think I would have done better with finishing my drink though if it didn't take an hour and a half for our food to come out because I hit a point after a few sips since I so rarely drink that I really felt the alcohol and was really really hungry. But it was a fun night and something we will talk about for a long time... especially the lack of lighting in the guys bathroom that both boys  kept talking about lol. I am so thankful for the night to step away and recharge with friends who have been with us through it all!  I am thankful for the gift of time together that our friends so thoughtfully gave us!

So for now we are home for a bit. That means our focus is shifting to house projects. Brent is working on mudding and taking drywall today in the bathroom. I am going to work on unpacking. There is a lot to be done here with the goal of getting the house on the market as soon as we can get projects done so our focus is going to be on that for a while. If you could pray that projects can get done quickly, efficiently, and cost effectively we would really appreciate it. If you could pray that God lines up a smooth situation for us to sell our house and buy a new one we would be very thankful. And if you are good at helping with projects and are interested in helping, we hopefully will know soon when we can do a couple of project days, we needed to get through those appointments first before we could think forward, but now our August is pretty open so we are really hoping to get a lot done in that month before we do the MMR in September so if you love helping with fixing two decks, yard work, taking care of a tree, putting gutters up, finishing a bathroom, and sorting though stuff to donate/pack... let us know. We know there is no way we are going to be able to afford a one story house that is as big as our split level house which means we need to downsize which we have started working on but thats going to be a process and something that I really am not good at!

There is a part of us for a long time that felt like taking a medical pause like this would be selling our kids short and not doing everything we needed to do for them... but we have take a lot of time to evaluate this... this situation didn't come lightly and in no way is this a rash decision... but a choice that has had many tears shed over and conversations had and what we think is best right now for our kids holistically. For 6yr we would do just about any test they asked us to do... including many that showed us exactly what we already knew and others that ended up making our kids sick. It is not that we regret the testing we have done over the last 6yr, we were taking the steps we thought was best at those moments... which is also what we are doing now even though the action with that looks different. We are just trying to take the right next step for our kids.

 Brent and I did something fun to play a joke on the kids... we went with one of the managers and took pictures like we were the ones going the the magic room this trip instead of the kids. We had a lot of fun and it was really silly

After we showed the kids the pictures we took the kids

 With the help of several friends we served dinner at RMH on the 30th! Thank you to everyone who helped make the meal or provide food. The night went really well!!!

The board out in the garden

Superhero ready for cardiology

Jilli was given this doll by a child life specialist back in April and Macy the doll has gone with us to a lot of things over the last few months to help Jilli through stuff. Jilli and I are going to an American Girl Doll Sale next week with the goal to buy a  couple of American Girl dolls at a discount to gift to the child life specialists at our hospital to give to other kids to help them like the one they gave Jilli

Coloring golf balls for the RMH golf outing

This outfit is what Jilli picked out of the magic room and she had an outfit to match her doll!

VR Jilli

Waiting for tube changes in her new Gracie's Gown

balloon after tube change

Kids from Wisconsin came to sing at the house

and make music with the kids

The house had free tickets to Summerfest and Switchfoot happened to be playing... so I took a bus down and saw Switchfoot... I feel really guilty that I have had two nights away from the kids lately as I suck at feeling ok with taking care of me... but man was this night so filling

Lydia's body has still been weird lately...

Watching the fireworks from the parking garage at RMH

It was the perfect spot... you could see about 6 different shows but none of them were super close so it was not loud at all

We tried... and failed to make maple baccon cupakes for the staff

Man these two people love and support us so much and I am SO grateful for them!!!

We needed to stop at the mall to pick something up and Lydia kept pretending to sleep on the floor with things...

This was soooo cute... but Hannah Anderson is way to pricey

My friend Stacy sent me a coloring book!

Hip Hop class

I painted Jilli's nails one night

Jilli noticed the Kohl's Cares plaque on the bench so we talked about how Kohls supports so many places we love! Thank you Kohl's!!!

When we are living in one room medial things go in interesting places lol

I don't think that is where you should be sitting

 RMH had a luau night! The board and staff made a fun themed dinner and then they played Lilo and Stich outside in the garden! Our friends came over and it was a great night!!! I am so thankful for the things like this that RMH does to help families!

Lydia had headache clinic... her pulse ox was running low sitting still... with having her take deep breathes we got it up but we need to watch it

Jilli and her friend MarySue make Forky from Toy Story 4

 Back home tired morning...