Love Note to RMH

Ronald McDonald House has little binders around the house to leave notes of love for the house but I prefer to type, so here is mine...

This morning I woke up before 5am to check to see if we have any urine in the U bag for the 24 hour urine study Lydia is currently doing and I could not fall back to sleep so I ventured to the green room to find coffee.

As I stood there waiting for my coffee to brew I looked around the room and thought of the good times we have had in there... the night playing Code Names with Holly, Kirk and Nate when Lydia was little and the afternoon a friend met me there for coffee after her child's appointment.

My coffee brewed and I headed to the play room where I thought about all of the amazing times my kids have had in there, the laughter with friends, the pretend meals and so many fashion shows.

As I walked to the stairs I looked around the great room... each of those couches hold a memory! From Jillian helping Kohls take down Christmas decorations, to showing the staff her photos of her Make A Wish trip, to Jillian and Alex playing I spy on the cow, to Bridget singing their silly Sesame Street songs together and Lydia and Laura crawling around on the floor laughing.

I headed up the stairs to the second floor kitchen to check out what cereals were in the cereal lasagna today and thought about the family dinners. We visited friends at rmh before we ever stayed here and we had dinner with those friends and I remember being in aww of the community that happens at dinner. This amazing community time like nothing else I have ever seen made us in turn want to help cook family dinners to give back to the community.

There were no sugary cereals so I headed towards the stairs to go up to the third floor, but as I walked past one of the rooms by the stairs I was reminded of last 4th of July. It was raining and the kids were a bit bummed that we were not going to see Fireworks so we joined with a couple of friends and had a movie and game night. However, as we all went to go back to our rooms fireworks started so we all gathered at the window in the one room that had a good view and watched the fireworks and played with glow sticks.

As I reached the third floor kitchen I thought of the s'mores and tiara party we had just a few weeks ago. Several of the girls friends were at the house and we all gathered together for a much needed night of laughter and playing and chocolate.

I sat down to eat my bagel and thought of other places in the house that I hold dear...

The managers office where we go to celebrate the victories like completing a hard test and the first place my kids want to go when they are disadmitted (Jillian's word for discharge). And its the place that I can vent to people who are there for us when an appointment is hard. Its the place where the HoHo pen lives that Lydia loves to color with when we check in and where Jilli is always asking how she can help around the house.

The art room were joy is found. Last night Jillian took an embroidery class (which she thinks is called bribery) and is so very excited about her new skill. The many nights spent in art therapy where art was the medium used to work through our feelings. The nights I have cried during music therapy as Jillian sang again after being really sick. In the art room we met another family on our first night ever at the house that would become a life long friendship. The art room is also where Alex introduced Jillian to fairy hair, something that a glitter loving 6 year old thinks is amazing.

The garden is the most sacred place I think I have ever been. There is just something about that space that feels like you are in a place like no other... I think that has a lot to do with the people who pour their love into the garden. That space has provided places to have deep conversations with friends, to leave notes for the fairies (they write you back too!) and to learn the alphabet. It has instilled a love of gardening in my kids that I could have never given them on my own.

Its not often that in a house with 70 rooms that you are the only person in any of the common areas, but before 5am when the house is sleeping, there is a different beauty about it then in the hustle and bustle of the day. A beauty that reminds you of the blessing that this place is.

There is nothing I could ever do or say to repay the blessings this house has been to our family. Our kids have grown up here, made friends here and learned more skills then I could have ever taught them and for that I am beyond grateful!

This place is so much more then walls, it is a community, built on love that gives of itself to hold others up in the midst of challenging days.

When we try our best

Its no secret that the last few months have been medically hard between both kids being hospitalized, or second opinion and the follow up from that...

Jilli is also getting older so there are things I am being more selective about sharing on here. She was watching a Brain Pop video recently about internet safety and she saw me uploaded photos for the blog and told me that I needed her permission to post photos of her and she is right, she is old enough to be able to say yes or no to blog pictures. There are many things in her life that she can not control but this is a way I need to be respectful to her.

One of the things we have been having a lot of conversations about with her team is areas that should be developing on their own even if I was failing in every way possible. Being a 4K teacher I have seen plenty of kids who came to school for the first time knowing next to nothing about letters, numbers, ect and then they are the kids that make the most growth that year because their beginning of the year testing is very very low but their end of the year testing looks right on par with their peers. These kids also come in knowing how to do some things just because kids develop just because they are human. Most kids learn how to jump, run, color, put clothes on ect without having formal lessons in how to do those things. There are ways to set up life to help those skills develop but for most children they just happen. This is also very true with pre writing skills.

Here is where we are having a hang up... Jilli is 6... she has been in PT since 15mo old... she has made some great gains over the years and works so hard in therapy and still we do not have some of those skills that should naturally self develop even with support in the development.

We are seeing that in speech as well. She has been in weekly speech again for over a year now and while she can make some of the sounds now in isolation we are not seeing it transfer into conversation like we would like it to be. We are also noticing the more she works on proper speech sounds the more she is having issues where she starts a sentence, gets stuck part way through and then sometimes can not remember the rest of the sentence or needs help finishing it. Recently we were driving and she started to cry... I asked her what was wrong and she said that saying "L" correctly just makes her mouth so tired... she wants to say it correctly that it is just too hard.

We are seeing this in fine motor too... honestly her name writing is her best writing and some days that can even be hard to read. Her hand gets so tired when writing so quickly... but those pre writing skills still are not there, she can not color in the lines, her drawings of people barely look like people, all of her shapes look the same... these are all skills that should just develop but they are not... even with a lot of help.

I dislike playdough... I don't like to touch it and I don't like the mess it makes yet we try to play with it often to work on hand strength. We own so many different toys and activities to help them grow and develop in these areas.

We recently had a doctor say that we need to push harder in these areas and it really frustrated me... first off because the doctor did not ask first what we are already doing in these areas... but also because if they understood development they would know that many of these skills that the kids are struggling with should self develop and if they are not, that means there is an issue... especially with supports in place. This isn't a matter of trying harder!

What is frustrating is that part of our team when I bring up these delays is that they look at me like "yeah and..." its not a disrespectful thing but more of a "what do you expect with kids that show muscle and connective tissue issues... this is just kinda part of it all and normal for kids with their overall symptoms" and then I have other members of the team who think we need to be pushing the kids harder in some unknown way because they think if the kids just worked harder and we pushed them more that things would change without recognizing how hard they already work.

There is also a "cost" to everything. Focusing on one skill means not focusing on others. This is somewhat true in typically developing children as well... you see bundles of skills develop at the same time where there is times where speech really develops and other areas slow for a few weeks and then they trade... but for typically developing kids this isn't a trade off but more that the body focus on one thing and then moves to the next thing... there tends to be an order that most things develop from most kids.

But ours is different... to focus on one thing means to have to set the others aside... there is only so much their bodies can work on at a time on top of their every day things or their bodies get too tired and can work on nothing. I feel like right now I am needing to remind our team of this because while I am all for pushing them and helping them learn and grow... we need to be smart about it and we need to focus on what is most needed...

And what is most important to the girls and our family.

The things this provider wanted to focus on are not the things that the girls are most frustrated about or the things that impact with daily living the most. Sure to the outside the probably are, but individualized care means looking at each family and asking what their goals are.

To work on some of the goals this provider brought up we would likely have to stop school and I am not willing to make that trade off... what kids learn before age 8 sets a foundation for the rest of their lives. It is key to development. Jillian has like 15 different jobs she wants when she is older and for those to be a possibility we need to help set a good educational foundation for her now which includes helping to develop her writing skills the best she can... if she is 30 and still is on oxygen but has no way to write/dictate/type the communication piece is going to hold her back a lot more in life then the oxygen usage. But often we get hung up on the obvious supports that sometimes we forget that the smaller things actually make a bigger life impact sometimes.

As a family we need to evaluate the "cost" of every medical test, treatment and therapy... while we as a family are willing to do a lot of things and arrange our lives in such a way to try our best for our girls... we as a family have to have some boundaries too... but that feels like boundaries in this area are viewed by the outside world as not trying hard enough or giving up which is not the case... we just have to choose which steps we see as most beneficial...


Tomorrow I get to explain to a doctor why we as a family are choosing not to participate in a medical study... it has felt like I can't share that with many people because most people think that you need to take every opportunity as it presents itself and for a long time we lived like that... and we got burned so many times... between nih, the failed botox, the studies that caused more harm then information... we have done a lot of things that did not provide fruitful results that now we are more selective... and I get that it might be hard to understand because it was once hard for me to understand too.. but for the sake of the kids overall we need to look at all of the pieces in the situation and choose what we think is going to be most fruitful and what lines up with our goals the most... and the study that we are going to talk about tomorrow doesn't check off enough of the boxes to make the sacrifices right now... that might change some day. It doesn't mean that we have given up... it means that we respect our children enough to want balance in their lives... they are kids first. While their medical stuff effects everything else in life, it doesn't mean we need to sacrifice everything else in our lives to jump through unfruitful things.

I have seen how our views on this all has changed over the years and I have seen how we have moved from a place of desperation to a place of trying to find balance. Yes there are hard parts of our lives... Lydia had more then one weird medical thing in the last week and decided she needed to self prove the need for some supports this week which is always "fun" 😵 but we still seek to find the balance in the midst of it all.

I am also a person who questions myself all of the time. I am always questioning how I can do better and if we are making the right choices... trust me, some days it is exhausting to be in my brain... but that means I am always reevaluating things... I just try to be wise enough to be evaluating and making calculated choices and not rash ones. I also seek wise counsel. I look to people who are involved in our lives to help speak into situations. I ask input of others... and not just doctors... but all levels of our medical team which includes so many different people with different points of views.

So while this isnt a comprehensive medical update, because I think the days of those are done out of respect (that doesn't mean that I am stopping blogging, but once upon a time I would list all of the symptoms currently happening but some of those are rather personal so I am choosing to become more selective about sharing the little details of those things), this is a glimpse of where we stand wit ha few things right now.    

My kids don't go to Sunday School

Read that title again...

Gasp...

How can it be?

My dad is an elder!

I started teaching the 3yr old Sunday school class when I was 12!

And did so until I was in college!

I almost went to school to work in children's ministry! 


Yup!


It was not some great thought out thing.

Jilli had her first hospitalization around the age when she would have started to go in the nursery so we didn't start putting her in then... and then her medical needs started to spiral as she got older and we just never put her in Sunday School.

Both kids sit in service with us... well at this particular point in our lives Jilli sits nicely... Lydia is a toddler 😜 and makes her own choices sometimes....

We reevaluate this frequently... one of the things you can count on is that I am always reevaluating things in my head... to an exhausting point...

But this is what we have continued to settle on as the best option for our girls right now...

When I wake up on Monday morning and see people whose kids are sick now and were contagious the day before (we are often contagious with things before we know we have things, that is how things spread... its not the fault of these parents, it just is how life is with kids) I am reminded that we might be making the right choice for right now...

But there are many families with kiddos with health needs that do have their kids in Sunday school... thats what is right for their family and with the help of their church they make a plan that works best for their child... if you are in a position to make that experience best as possible for that family please do everything possible to make that happen! Families with kids with medical needs are excluded from many things... church should NEVER be one of them!!!


But sometimes I wonder if my kids are missing out... if they are missing a part of the culture... if they are missing Bible lessons... Will my kids even understand the Buzzfeed lists in 20 years that talk about there era of Christian culture?

Sometimes then when I start having these internal debates a children's Bible song comes on my phone that has sketchy theology at best and I think maybe my kids might be alright lol...

But in seriousness, I see some ways that my kids are having conversations that I was not having at their age.

There are ways that the American culture pushes kids to grow up to fast which leaves us with young adults searching for their childhood... one of the things that pissed me off the most as a teacher is when I would have to send notes home to families at the end of the school year telling them that their child was behind if they didn't know 19 sight words and read at a level B as a 4 year old... that was an obtainable goal for some kids but not for all and I question if it was even developmentally appropriate... it also brought phone calls of crying parents worried about their kid's future... their kid was 4, their life was not over because they did not know this information... many countries that preform better then us haven't even thought about schooling at age 4.

But there are other things that I think we sell our kids short on. Kids can have pretty complex, in depth conversations at a pretty young age if they are age appropriate. Kids are great at observing the world and can bring interesting perspectives. I wrote (this post) a few months ago about a conversation that Jillian and I had about hearing God after I was listening to a podcast in the car. She picks up a ton from the podcasts I listen to and not everything I listen to is about fluff (my top podcasts are: Relevant, That Sounds Fun, The New Activist, and Unedited). Friday night we had a whole conversation about the ennogram because That Sounds Fun is talking about the ennogram for the next few weeks.

But one of my favorite things is that I have heard Jilli singing more worship music in her everyday life... playing with toys, riding in the car, doing her meds... sometimes her version of the words are really funny... but her heart is in the posture of worship.

Yesterday was a kinda typical Sunday morning in our family... Brent was doing sound, mom was overseeing ushers, dad was an usher (dad also plays in the band some weeks), and I had the girls. This particular week dad was with the girls and I for most of worship and my heart was so thankful! I held one of Jilli's hands, dad held the other and Lydi danced on the floor in front of us... this isn't the typical American worship experience... but man was it beautiful!

So while sometimes I struggle with trying to make sure we are giving my kids enough of the "typical" childhood experience... I also see how beautiful some of the aspects of their childhood are that are a byproduct of us doing some things differently... us having the kids in worship with us was never some deep theological plan, I love the Sunday School teachers at our church, but it is what is working for us right now and there are some unintentional things about it that are beautiful.

Sometimes I feel when there is unintentional happy things about are life that are a result of doing things differently because of the kids medical needs that they are are socially acceptable to share... I feel like sharing the disability experience has to fall into the boxes of either being so sad and overwhelmed about it all or try to be a motivational poster... and I don't want either... I just want to live our lives... and in that there will be hard moments and there will joy... there will be unexpected things along the way. 

Gratefulness

I’m sitting on the floor looking at a card of kindness I feel so undeserving of... I didn’t do anything for this person to write a kind note to me, yet here I sit reading it.
Ever have those times in your life where you look back and see who you were and how much you have changed? Sometimes we can get grumpy about those changes but sometimes we can be thankful.
I see how God has helped mold my heart into being more thankful. I am a doer which can often lead to be getting confused for me thinking I deserve things because I do things or that I’m a “good” person. It can get easy to fall into the society trap of feeling like if I do good then things should be easy, we like to make life into a formula.
If we are honest this is a lot of our disagreement in politics... we think that someone else is getting something that we deserve... I see a lot of the complaints about things like Medicare, Medicaid and food stamp... often it is middle class people saying that they work hard therefor they deserve to have everything they want but think it is unfair that they have to take a cut to help other people that they view as lazy... we (I say we because there was a time in my life where I struggle with this) without knowing the people or the stories... we just see ourselves and what we think we deserve. 
It would drive me crazy when people would say in a general sense that gratefulness equates with happiness because I thought I was grateful but yet could find so many things quickly to be ungrateful for... I’m a realist which means it can be easy to tip me in either direction.
But I’ve seen my heart shift change. I’ve seen how I can be grateful for things that make other people scratch their heads.
Gratefulness became unattached to the transactional western form of gratefulness and more towards a more grateful for life in general.
I don’t have some great three step plan for this... what life has taught me is that life isn’t about formulas. I’ve read some books, listened to some podcasts... but this was God, not me.
It doesn’t mean that I don’t get surly about things still... and sometime it’s silly things... but I see now that when unexpected blessings happen I’m surprised and deep down grateful because it’s not about me, I’m just in awe of what He is doing and in turn that makes me want to be available to bless other... it becomes not about works and applause but instead about being His hands and feet.
This season we have been in the last few months has been hard... really one of the harder seasons we have walked through... but I see His provision through it even when I wasn’t noticing it at the time. It’s not a good canceled out the bad thing... it a love in the midst thing. It’s a sitting here still in the midst of the hard and wondering why God loves me so much thing (and struggling that I don’t always see His provision for others in the same way as I do in my own life because I know the details of mine and highlight reals of others... but also knowing full well there is very very real suffering in this world that shatters my heart... which I’m sure my feelings about it is just a small fraction compared to His but I struggle to rationalize that).
I can push this to the other end... I can get grouchy with God for providing in ways that I could not have earned or deserved... trust me I am aware how messed up that it... but it doesn't make it less true... I have been skeptical of things I feel like I can not earn.
This person who wrote this card didn't know our AC went out this week... they didn't know that we had a really rough appointment last week... they didn't know that I got MRI results back last night... they were just love! I want to steward my blessings well so that I can be love to others even when I don't know all the details of what is going on... and I have messed up at this and will mess up at it the future, but yet God still has given me His love.
I don’t have this all right, and I am sure I will need to keep learning this lesson until I die, but I’m thankful for where He has brought me on this journey so far.

Seeing the Spring

I have listened to a couple of different podcasts lately where they have talked about how we naturally need the seasons in our life and how that doesn't just play out in weather patterns but also in routines of our lives.

Another thing that was brought up was how we in America are really good at trying to make all seasons the same... I can buy berries in the winter, turn on the AC/heat to get whatever temp I want in the house, we swim in indoor pools all year long... we like to make every season the same...

And that doesn't just apply to those things but it applies also to the seasons of life...

We always want to live in the season of happy, wealth, friends, strong faith, and peace. We only want the good times and never the hard...

Sometimes we even beat up on ourselves for having the hard times... like if we were just good enough then the hard times would never come... like somehow we can control the seasons in life.

I wrote a couple posts back about how it had felt like we were in a season of death. We have not hidden that the past few months have been really hard... like I have lost count how many times I have packed our suitcases already this year, we have spent over 2 months away from home already this year (likely closer to 3+ but I am too tired to count!)... I feel like we are in a perpetual state of transit... I am not sure if we should be packing or unpacking at any moment.

Growing up I had a fear of the dark... I was old enough to see the news of JonBenet Ramsy (we were closish in age) and I remembering being freaked out... big moments in history impact people even if they were not directly related to the story...

As I have gotten older my fear of the dark is better but still there sometimes... times when I am already stressed and worried. A couple of times a year that child like fear strikes again... two nights this week I have woken up to every slight sound... poor Brent, I have woken him up more then once in the middle of the night.

I was worried that this fear was back. I have had it circle back enough times in my life that I have now realized that its stay is normally short at this point... it only disrupts a few days of sleep a year... but normally when it comes I am really mad that it is back because I think that I should be old enough to be past this... that this should not be seasonal... but it is... and I can either be really angry or I can accept that and do what I need to do to try to be as mentally healthy in that area as possible but also know that it was a long held fear and that it might still come up sometimes and in that I can have compassion for myself... I can take the steps I need to in order to work through it.

Early tomorrow morning we have a big medical meeting... I am honestly have just been shoving the emotions I have about it aside... except not really... I think I am shoving them aside by not thinking about them but I can tell by how my body has felt today, how I have had to make myself eat most meals, how I feel the weight but don't want to think about it, and how I have not made a list for this appointment.

Tonight the kids and I went for a walk in the secret garden right at dusk... I forgot my phone inside but it was so beautiful! The reflection of the sunset on the building was breathtaking. The kids were giddy that the fairy garden and ABC garden came back today! Jilli even wrote a note to the fairies that welcomed them back. We looked at how much the plants have grown since last week. We noticed green in places that it was not just a few days ago. It started to mist so we headed inside slowly. As we came towards the door I could see the crane over the building... our hospital is currently getting a very large addition that will improve many things.

I could see new life all around me.

Beautiful Things:

"All around,

Hope is springing up from this old ground
Out of chaos life is being found, in you"

 

 

I wasn't planning on going on this walk tonight... we just did because the kids saw a wagon and wanted to go for a ride... but the beauty of this simple walk in a place that I have walked so many times before felt like hope springing up. 

 

We came inside and ran into my friend Sara and told her about how beautiful it was so I grabbed my phone to take pictures and we headed outside together. It was raining a little bit harder now but the rain added to the beauty... it didn't feel like an inconvenience or a bummer that it was raining, it felt like it added to the masterpiece. 

 

This afternoon I was feeling worn down by the week... we have had a busy day every day since last Tuesday... Jilli is showing that she is tired... both physically and emotionally... and that is coming out the best she knows how for her age... which feels exhausting for both of us. 

 

But hope is springing up from this ground. 

 

I still feel nervous about the appointment... but I am trusting that we are going to take steps forward. Child life is coming with to help with Jilli's feelings (she is not so fond of people talking about the whole experience around her) and that in turn will help me so I can focus on talking to the team. Several people have checked in with me today about how I am and have offered support and love. 

I am holding hope to this spring...

This has been a hard winter...

but I see the spring! 

And the spring doesn't negate the hard winter.

And it doesn't mean that everything is flowers without thorns...

 

But spring has its beauty that is just breathtaking 

Join us please

I post a few times of year about organizations that help families with medical needs... some of these organizations we are connected with, and other times we are not but know people who are helped by those organizations....


Today is going to be a little bit different...

And this is uncomfortable for me!


I LOVE to shine a spotlight on organizations that are amazing....

I don't love shinning a spotlight on things that directly help us...


I am the WORST fundraiser!

And I am the worst at asking for help! Like there are times I will feel like things are closing in and I can't keep all the plates spinning... and I will get frustrated and then I will remember that there are people who have offered to help and I have not asked... and that is on me...

So some people have asked how to be involved in a few things so here is my post about that. For the scheduled events that you would need to sign up for I am going to do them by the date they are happening...


Kade's Klassic:  (June 23rd)

I wrote a couple of posts ago (click here to read) about an amazing opportunity that I am still in awe of! We have been nominated to be the Kade's Klassic family of the year. This is an event that happens in our community and we were nominated by my former boss (who is much more to me then just a former boss... that just happens to be how we met) to be this year's family of the year for this event. What that means is we will be gifted money raised at this event to help us fix up our house so we are able to move into a house that is one level and better set up for the kids (that post I reference to above gives all the details about the house situation). We are still blown away that we have this opportunity and see how life changing this is for our family and our future. Like I seriously have to hold back tears when I think about it. I just keep thinking how we don't deserve this... we don't deserve to be loved like this... my head is swirling... but I am thankful!
If you are wanting to attend the event there is still time for you to sign up! The event has a golf outing (an adult and a mini golf kids!) and a 5k walk/run. They are also looking for raffle baskets and donations. The event is on June 23rd
Here are the links for each of those things and to be able to sign up:
Golf
https://forms.gle/C9YW4R66uB3w9V8z5
Walk/Run
https://forms.gle/ZJmtSjxE6vk8WSV88
Kids Mini-Golf (Ages 12 and under)
https://forms.gle/kSuyyfaygEnmQWRBA
"Extras" (t-shirts & lunches)
https://forms.gle/UzmmbxLeN5ASMkh6A
Donations(Raffle/Auction Item)
https://forms.gle/gtSKcn1kAxKajdVn7
Sponsorship (Hole & T-shirts)
https://forms.gle/shn63eSPAzddfgaT7

If you want to learn more about Kade's Klassic you can find that info here: kadesklassic.com


Dinner at RMH: (June 30th)

A few times a year, to be able to give back to a place that gives so much to us, we organize cooking a meal at Ronald McDonald House. We are making summery food!!! We are in need of 10-15 people to help cook, serve, and clean up. We also are in need of people to donate food (or Costco/Walmart gift cards) so that we have food to prepare to serve. We have a Facebook event in which you can sign up to be there that day or sign up to donate food. We are making dinner on June 30th. I need any food donations by June 28th so I can pick up anything else. Also the house is in need of white printer paper, individually prepackaged snacks, and ziplock bags... if you get them to me I can drop them off there when we make dinner.

You can find the Facebook Event here: https://www.facebook.com/events/360475027909867/


Briggs and Al's Run/Walk for Children's Hospital: (September 14th)

Each year since Jilli was born we have participated in the Briggs and Al's run for the hospital that our kids receive the majority of their healthcare at. This is a way to give back to our hospital. This past year has shown us even more of how thankful we are for our hospital  and all of the ways that they help our kiddos. This event raises money for multiple different things at the hospital. Two of the big things that impact us is research and supportive services. For several years we have known how amazing the expressive therapies are and in the past 2 months we have spent a lot of time with child life specialists at the hospital as they help us all work though some of the trauma that we have experienced. I am very quick to worry about any service that we use because I know that everyone's time and money is limited and I know if someone is meeting with us, that means they are not meeting with another kid at that time... but I have seen the hospital work on expanding services that are supportive to help families... the thing I also know is that insurance does not pay for those things... the money has to come from someplace to fund these amazing people's salaries and supplies! Donating and taking part in this event is one way to help fund those things. We are currently building our team for the event... will you consider joining us? To find out more information go here: http://www.chwevents.org/site/TR/RunampWalk/General?team_id=16553&pg=team&fr_id=1250




So those are the events....

There are a couple other things...

We are going to need some hands and feet help working on our house... we need to get some yard work done, put up gutters, painting decks and finish the master bathroom as well as some other smaller projects... if you are interested in helping with those things please let me know so I can put you on a list. I HATE feeling like we are bothering people and I often do not know when someone says "let me know how I can help" what level of help the person is offering so if this is a way that you would like to help with your hands and feet please send me a message so I can mass message when we have dates set for when we are going to work on things.

Also, I am really nervous going into this week! We have a leg braces appointment that we really need because both girls have grown out of their current braces and have not been able to wear them for the past two months... this is causing some rolled ankles, bruises from falling and hyper extending. Jilli has woken up more then one night crying that her legs and knees hurt... she NEEDS new braces... which once again proves one of the things we knew before we went to NIH but that was massively questioned at NIH... but we need to right braces and we need them quickly before a fall causes an injury.
We also have a big meeting this week with our medical team about NIH. Several results have come in (not all) and we need to make a plan about what we are doing next on a few things. I feel very emotional going into this meeting. The last thing I want to happen is the feel placated or that our feelings about this all are exaggerated... we are carrying a fair amount of hurt about this all still... less then we did... but still a fair amount. Some of the notes they sent back didn't say anything negative about our home team when they said negative things to our faces so some of the notes don't read as hurtful to our doctors as it was being there. I need good, clear communication at this meeting. I need our emotions to be heard and not minimized. I need people who know my kids to speak up for what is best for them based off of 6 years of experience. I am nervous!
Lydia is also having a sedated MRI this week. I am interested about a couple of things on it. We are not expecting to find anything huge on it and hopefully that is how it goes. She does need to be sedated and sometimes my kiddos lungs don't love sedation (never a large complication) so we will be taking precautions. She also has a yucky diaper rash and some seasonal allergies which are both bother her so I am hoping tomorrow is a better day for her... she did get a super cute haircut though today!
Brent is also starting a new job tomorrow!!!
So with all of that, I ask for prayers. Prayers for comfort, prayers for the right people, right words, and calm hearts.



So those are the things we are asking you to join us in... if you have any questions please let me know!

This picture is so us lol!

Here is the nice one

 

Community

This is not a kids health update post... its an Amanda theology post so continue if you are ready to jump in....


Last Saturday I spent the afternoon grieving the death of Rachel Held Evans. My morning had been very productive... 9 boxes to Goodwill... but I had more I wanted to accomplish until I sat down mid afternoon because my back hurt and opened Twitter. Rachel had been sick for a few weeks and I knew enough in the medical world that things really could go either way with the very limited information shared... but once the news hit my Twitter it was like a hard hit. I never met Rachel, I had honestly really only started to get to know her in the past year from different podcasts I listen to. Its no secret that I have really wrestled with the American church the past few years... I wouldn't say my faith... I have believed in God through this all... but I have massively struggled with feeling like the church is more married to Donald Trump then the Bible (remember, swing voter here... I voted Republican in the primary)... and thats where I found Rachel... a group of Christians who struggled with this like me... who loved their local church but wondered a bit about it all being more of a Republican social club to spew political ideas wrapped in twisted Bible verses (I am going to state very clearly here that my church does not talk politics from the pulpit, this was never the case of this coming from the stage at my church... however I walked up upon plenty of hallway conversations and facebook rants...) that I started to feel like, even if no one directly said it, that I didn't fit in, I wasn't falling in line. It feels like often these days there is little room for conversation around things (I can be guilty of that too) and more of a statement in every section of society of in or out based on thinkings and ideas about even small topics. It starts to feel like you have to have an opinion on everything and that the worst thing in the world would be for your opinion to change... in the face of doubt double down.

I had not read one of Rachel's books though, so when she was hospitalized I bought on and started to read it... this morning I read some more... this passage struck a cord with me:

“We were, as they say, “plugged in” to a church. To be plugged in to a church is to be wired into a highly choreographed, interconnected system of relationships, programs, and events that together produce a society complex enough to put on a decent Christmas pageant. One’s function in the collective is determined by age, gender, and marital/procreative status. So as a young married woman with no children, my job was to host wedding and baby showers, co-lead a newlywed small group, make casseroles for potlucks, and inform people who had no business asking that Dan and I would start a family “in God’s perfect time.”

I have witnessed firsthand how such a network can perform miracles: a month’s worth of dinners for the mom undergoing chemo, a driveway full of men ready to haul furniture the minute the moving van pulls in, twenty-four hours of prayer and rotating visits during a complicated surgery, fully stocked cupboards for widowers, and hours of free childcare for struggling parents. These are the quotidian signs and wonders of a living, breathing church, and they are powerful and important and real. But to a woman for whom the mere mention of a “ladies’ tea” elicits a nervous sweat, sometimes being plugged in felt a bit like being assimilated. There were rules in this society, particularly for women, and I still hadn’t learned my lesson about avoiding the topic of eternal damnation at baby showers, showers that were now, inexplicably, under my care. I was better suited for leading a Bible study or theological discussion, but those things happened at the men’s breakfasts (because, apparently, only men like theology and breakfast foods), so instead I constructed diaper cakes and mixed punch and listened to women exchange gruesome and detailed birth stories before turning to me to sing, “So, when can we expect a baby Evans?” ~ Searching for Sunday

In college some of my friends were at a place where they wanted to have theological conversations... I was still in the place however of feeling like I needed to have the "right" answer but I felt like I didn't have enough answers to be in those conversations... I didn't understand that those conversations help you grow. I hate conflict so those conversations with people with different ideas felt like a debate even though it was healthy conversation. 

But the last several years has made me think of community and dynamics of that...

When I say I grew up in the church I mean rather literally... we were not a show up to church when it is convenient family... we were more of the family who was there all the time... Saturday night, Wednesday night, every night of the week during musical season, and feeling like we lived there when we build our new church building. Sure I had neighborhood friends and school friends... but true community was found at church. 

When I went to college my true community was found in the student ministry that Brent and I were a part of. For a girl who felt a bit like a let down when she decided to follow a boy to a liberal arts college... I am SO glad that I did... and not just for the boy but also because it stretched and grew my faith in ways I never imagined. 

But the last few years while I have still had community in the Church (our church has been amazing at supporting us)  my community there does not look like how it did when I was growing up and it doesn't look like college either. While I see some benefits to that (the 90's evangelical culture had a firm wall between sacred and secular) sometimes it also means that I feel like I am missing some of that. 

Which has made me spend time the last few years wondering about community...

Why do a we have...

Bars

Country Clubs

Philanthropic social groups 

Clubs

 

Community! 

 

I mean these groups serve additional purposes in addition to community but community is what causes people to often stay... it causes people to feel like they belong. 

 

Community is often dysfunctional... people are great at bringing dysfunction even if they don't mean to....

 

So I have been pondering the question for a while if it is wrong to find community in these places instead of in church...

 

My ideas right now look like

 

-I think it is a problem if you are using those places to replace your church community. If you are spending your Sunday mornings (or whenever your group of believers gathers) someplace else to get community elsewhere I think that is an issue. 

-I don't think God intended the only place that you get community would be church... otherwise He would have set up for you to only ever be in church.

-I think that the church is bigger then what happens inside its walls

-I think it would be wrong to move more in the direction of putting more walls up between people who are in the church and those who currently are not... if the church is just sitting around waiting for people to wander inside on their own then the church is failing. That also goes that if your church's only plan for getting people inside the walls is with shaming facebook posts then the mark is also being missed. I really feel iffy on christian only things like schools, insurance companies and stores... I think we often set those up to make ourselves a "safe" little bubble at the expense of other people's salvation.

-I think there are some things churches do in the name of community that really just is a social status show and that is a problem.

-I think that if God is truly all powerful then there is not any limits on what He can use to draw people to Him... but don't get that confused with God causing harm and bringing evil into the world to get people to submit... for God to be God He can not be evil. 

-I think we often live in fake/safe community without ever really being known by anyone. I think this was occurring long before social media... infact I said about a year ago that there were some people that I follow online that I wish I could go back to just knowing them from casual social passings instead of knowing what they post of social media because that has now tainted my views on that person (and I am SURE there are people who think like that about me). We think people know us but really they just know our life circumstances. 

-I think sometimes the church stinks at the balance between fluff and depth... we like to go between dropping 100s of easter eggs from a helicopter to yelling on street corners that people are going to burn in hell. In both of those extremes real community doesn't happen. 

-I think the Church also has not always looked like the Americanized version that it looks like here in the states right now even though we tend to think that the church must have always looked white and evangelical. 

I know I am not the only person wrestling with these things... I know there are churches all over America that are wrestling with these very same thoughts. 

I don't have any huge great conclusions yet on all of this... 

and that is ok! 

The wrestle is ok!