Hearing God

We have spent a lot of time out of state lately... which means I am SO behind on podcasts because I didn't have working headphones until the return flight home from Disneyland so I am working on catching up. Yesterday I had a dentist appointment and Jilli asked if we could listen to Annie on our way (That Sounds Fun podcast) so we listened to her episodes with Lisa Terkeurst and Trey Kennedy. Today we had a busy day with meeting a friend for lunch at Chick fil A, PT, Speech, and meeting with child life and then running to Target on the way home... so we spent a lot of time in the car driving today. On the way there we listened to the latest Relevant episode but on the way back we listened to the That Sounds Fun episode with Meredith Andrews...

There were multiple parts of the conversation I found interesting... I have never been in the charismatic world and Meredith is. There were some of the things she said that I wrestle with how those ideas are practiced sometimes (I do not know her well enough at all after listening to a podcast to know her whole views on things, I just know there are some things sometimes that I worry about how people practice that theology however I have seen other people do it beautifully)... but then there was a beautiful moment in our car...

Meredith was saying how she talks to her kids about what they think God is saying to them... honestly I had never thought of asking my kids that. So I did. As I pulled into our driveway I asked Jilli what God says to her. She said she is not sure but then she ask me "momma, what does God say to you."

Honestly just a few minutes before this I was thinking about the things that I feel like God is saying in my life... however honestly I do not share those things with other people often... maybe its the world I have grown up in but I don't have many people in my life where I feel like I could tell them that I feel like God is telling me ______________________ in my life. I mean I have always heard people talking about looking for what God is doing in the world but it has never been brought to the point of people asking each other what they think God is personally telling them. I think there are multiple parts of this...

1. I think that honestly we are often a country of shallow surface social club Christians... where talking about what God is saying to you is still "crazy talk" within many Christian circles. I mean one of the current favorite "Christian Women" books scares me because it shows how sallow our communal faith is if that book is being taken to be Christian.

2. I think we think of prayer as a before a meal activity. Or maybe a wishlist that we tell God before bed. I was listening to a podcast (I am pretty sure it was Aaron Niequest but I don't remember what podcast he was on as I have listened to him on multiple) was talking about what the Bible was talking about when it says to pray without ceasing and I had a light bulb moment about what a conversation with God looks like and the crazy thing is that I was already doing it... it just didn't look like the scripted meal time prayers that we are all taught.

I was driving and thinking about the things that God has been telling me lately and how I felt like I needed to share some of those things with someone in my life that could speak back into those things... here is the thing though... I feel like some of the things that I feel like God is saying are things that you would only understand the journeys we have been on for several years... and I feel like some of the things that I feel like God is saying are not necessarily the culturally acceptable things... actually the mirror in our bathroom says "Maybe God's way of providing doesn't look like the world's way." When I wrote that up there many months ago I thought that was just a truth He was giving me to get through a situation... but what has ended up happening is that phrase has been a phrase of this season... maybe I need to get a canvas and paint that saying (there are paintings around our house of different things God was teaching me in different seasons... I can tell you what was going on during each of those paintings and what God did, but most of them have been painted during the pain of the situation).

So back to Jilli's question... I gave her a "simple" but true answer. I told her that "after NIH I felt really hurt, upset, and internally bruised and the evil ones likes to kick us when we are down... and I started to feel very accused and the thing I have felt God telling me lately is that He is not the accuser. That He is love." Love does not mean shying away from the hard stuff... actually I think we contribute a lot of things to love that should not be (I have been wrestling with the phrase "though love" and how that relates to God for a while now and I am starting to really wonder if those two things can go together... I really should pick up Learning to Speak God from Scratch because I believe he talks about that).

There are some other things that I feel like God is saying that I don't want to wrestle out on a public platform but instead seek wise voices... partially because of that phrase on our mirror... but that I feel like He keeps bringing back up. I also heard a really interesting Twitter post the other day (I can not find it to attribute it to anyone but I will keep looking because I really want to read it again too) but it talked about how the evil on tempted Jesus with good things... we often read that differently but that the evil one tempted Jesus with things that people could have said were positive but they were not Godly. But I was feeling really accused about one of the things that I felt like God was saying and it took me a while but I feel like that was the evil one trying to shame me with something that looked "good" but was not of God... and it wasn't anything evil or bad and if I had gone running in that direction, from the outside many people would probably have cheered me on but it would not have been obedient to God. Sometimes doing the wrong thing looks like chasing after a shinny hallow good.

Jilli started talking about what she thinks God tells her stuffed sheep and you know what, thats fine because she trusts that God is big enough to talk to her stuffed sheep just like she does.

i then got Lydi out of the car and when I came back to get Jilli she was singing worship songs... I love how her little heart just turns to worship... that is actually pretty frequent to her.

Jilli was in church on Sunday but having a really rough muscle day... infact I was not sure that we would make the day out of the hospital... her body was beyond tired. One of the things that kept coming to my mind for some reason that morning is that God is looking to move the things that stand between you and Him but for different people that looks like different things. For Jilli, right now, I do not think that her health stuff stands in the way of her relationship with God... but I don't think that is a view that everyone in my shoes would have... Jilli doesn't attend any kids programs at our church (and it is not that I am against children's ministry... actually I almost went to college from that and I started teaching a 3yr old Sunday school class when I was 12) but Jilli sits with us in service. We don't water God down much at our house... my kids listen to the podcasts I do (and we don't allow them to use technology in the car so they are stuck looking out the window and listening to whatever I am) so they are listening to conversations about God all the time... amazing conversations that sometimes are very deep. My kids know some Sunday school songs but mainly listen to the worship music we do (side note, there are some Sunday school songs that as I learn more I am having more theological issues with...). Once again I am not stating that children's ministry is bad... what I am stating is that because of who my kids are and what their needs look like this is their experience in life and I see some of the great depth of conversations that I am able to have with my kids because we don't water God down. Conversations about God are very normal to them... to the point it was not weird at all for my child to ask me, after listening to a podcast, what God is teaching me.

We got into the house and I went up to the bathroom and Lydia was chewing on a chewy (frozen teether that is safe for her) and Jilli was working on getting her coat and shoes off and while I was going up the stairs I could hear Jilli telling Lydi about God... she was saying that God is big enough to be here with them right then and be everywhere in the world too. It was the sweetest conversation that happened so naturally. It was one of those mom moments where you feel like maybe you are doing something right (man I needed that this week... these two have been at each other a lot the last few days!)

I wrote a post yesterday that is very dear to me that I had been working on in my head for weeks and am able to brag about a friend in... I am thinking Facebook algorithms are being strange because people are saying that they are not seeing it (but other people are) so if you missed yesterday's post CLICK HERE TO READ IT

You can still have joy

Dear momma,

Maybe you are new to this journey. Maybe you are many years down the path. Either way I want to let you in on a little secret... no matter what your life looks like today you are still allowed to have joy.

See sometimes joy can be mistaken for other emotions like apathy, when you are going through the midst of something hard but joy and apathy are different.

The world says in the midst of hard things that you need to completely fall apart, and sometimes that is emotionally what you need to do for a moment, having feelings of anger, frustration, and disappointment are not inherently bad and denying yourself those feelings can be really harmful however...

Just because there is something hard going on in your life does not mean that you have to give up on joy... joy can coexist with hard... and joy does not force you to ignore those heavy feelings but joy does come along side and helps to provide hope.

I can see the times in our own journey where I have felt like the world has said that we can not have joy in the midst of hard. The times I felt bad talking about the good aspects of life like our car seats do not have crumbs in them, I have not needed to clean spaghetti off of my furniture and my kids can sleep til 10am without waking up from hunger, but most people look at you like you are crazy if you try to tell them the good sides of things that just look hard from the outside.

We had an experience recently at a medical center that we are not normally at, where I felt like our joy was questioned. There were multiple times were we were trying to explain how we cope with two kids with health needs and in turn they would take that as us not caring or trying hard enough. At one point I was accused of being "just a care giver" because I did not spend enough time crying to qualify being considered a "mom who cares." This infuriated me because we made a choice during our first hospitalization many years ago that we had two choices... either this could wreck us or this could bring us as a family closer together and closer to God. We chose the latter... and that does not negate the really hard moments in our journey. A couple of weeks ago I was having to take pain meds to sleep because I was clenching my jaw so hard in my sleep from stress that I was waking up crying in pain. That is just as true as the times there are joy in our circumstances.

We continue to choose joy and search it out because I can see all of the things we would miss if we did not. We would miss the silly art about poop while in the hospital, the smile on my daughter's face when she is on a "wheelchair swing", and the amazing cuddles. We would miss the amazing people that our daughters are and that is too precious to miss. I love my kids far too much to miss the happy things because the world says that joy and hard can not coexist.

Joy also makes the hard not feel so hard. It helps you to not feel like you are being crushed. It helps you to be able to see the good things in every situation and not in a cheesy "all things work out in the end" kind of way (because there can be an unhealthy mindset there too) but in a way where you can see the good in the right now even if it is very small.

I have been privileged to watch my friend Sara do this amazingly while juggling her child having a terminal diagnosis that came as a surprise when child was older then mine are. I have watched her be super intentional about the time they have as a family by doing simple things like baking brownies or taking walks but also being really intentional about big things like how hard she worked to make last Christmas magical. It is not that she is burying her head about what the future brings, we have had a lot of conversations about the reality of what is going on, including after my last conversation with Sara, Jilli and I had a long conversation about what Hospice is because that is what Sara and I had talked about over lunch because that is what she needs to be thinking about. However I see even in those hard conversations how she is not making her choices out of just fear, but instead is choosing to look for the things she can make good in the situation and that goes into all of her choices, including what they are looking at for hospice. Jilli and I were honored to be at her son's baptism a few months ago and something I kept thinking about while I was there was how many people would be making that choice in this situation out of fear however I could see how as a family, that is not how this choice was made and how much deeper that experience felt because of that... the baptism was not being done as an insurance policy of a "what if there is a heaven" but instead because they look to find the amazing things in the midst they searched out someone who helped them dive into a beautiful spiritual journey through this process. When you meet other families like this you can just tell.

I know of stories of others though who have their joy viewed as a weakness or disattachment, and while we need to be carefully watching for disattachment in parents with kids with special needs because that can lead to very bad situations, we need to figure out a way to discern between joy during the hard which can be a very positive coping strategy and detrimental coping strategies. I felt crushed when my joy was seen as something else and I felt like there was something in me that was broken, but as I came away from the situation I could see that maybe in the program we are in that it is not seen very often.

I feel like being able to have joy in the midst has made me better able to handle hard situations. I feel like I am able to have more constructive conversations with out medical team in order to better help my kids because I am not stuck on just the hard aspects. I can't imagine how devastating this would all feel without joy.   

So momma, you have permission to feel joy even if the world misunderstands it.

ps: the whole time I was writing this the song "Joy Invincible" by Switchfoot was stuck in my head 

Wish Trip Day 6

Our last day :(

We got up and went to Tangaroa Terrace for breakfast and then worked on packing our bags some. Jilli wanted to go to the pool one last time but Lydia did not so we took Jilli down to swim. She did much better this time as her oxygen stayed on the whole time.
We went back up to the room and packed up and checked out. We headed into Downtown Disney for a little bit to find lunch and then got into the rental car and headed to the airport. Airport security was pretty smooth.
Lydia spiked a fever on the flight home... this isn't uncommon with her while flying for some reason. We always blame it on a virus but it is weird that it is happening at least one direction of every trip... thankfully this trip it wasn't until the trip home. She did well overall on the plane ride but you could tell she didn't feel well. Jilli had stomach cramps the last hour of the flight but thankfully flying home from CA is an hour less then flying there so it wasn't as long of a flight, it was much smoother flying and there were very little clouds so we could look outside and see really cool things.
We landed and the limo picked us up and drove us home. We got home at midnight and then needed to hook the kids up and get them to bed. It was after 2am before we fell asleep.

We also came home to two very large packets from NIH. I knew I wouldn't sleep without at least looking at them... here we are almost a week later and I have only read about half of Jilli's packet because that first night I found so many errors I just put it down. There is no use in raising my blood pressure. There are just so many things that are wrong... like they stated we agreed to changes we vocally did not agree to, Jilli's skills and abilities are listed incorrectly in the rehab note (it says she has mastered skills she doesn't even have step one of down), and there are test results in there that they told us while we were there came out normally but now that I have the test results in my hand I can see otherwise... like one study it is saying that she either had an abnormal result or the machine malfunctioned... instead of doing the test over or admitting that they are not sure they are just going with a machine malfunction and just ignoring the abnormal number... that is not the scientific way to do things!!!! Another test they told us was normal but now I see that they were only able to accurately get a number for one part of the test and not the multiple other parts... you can not say it is a normal result then with very limited data... either do the test over or say it is inconclusive. We don't mess with data... especially from a place that accused our home hospital of not having data (we do we have tons of it). I was frustrated by that a lot... then there were notes of someone on the team doing daily physicals when they didn't. But when I had to put the stack down was when I read the recommendation for why they suggested counseling for Jilli... I have nothing against counseling and we have done family counseling before and are currently talking about what ways to best support the girls from a mental health standpoint because currently that is not an area we are very worried about but we want to support the girls holistically so that is an area that there have been conversations about... but what made me mad was their why... they said she needs counseling because she is able to vocalize what does and does not help her body feel better and she spoke up about that at one point when they were talking about changing something... what the crap! Isn't that the GOAL!?! She is a very bright 6yr old and we have always encouraged her to be a part of medical conversations and who is able to vocalize how her body feels. I know the team said multiple times that they never see kids that are at the cognitive place my kids are so maybe that is a piece of it... but come on! She does not need counseling because she can tell you what does and does not make her feel better... that is not a problem... that is something that many people really wish their kid could do. I just set the paperwork down at that point... I had not thought about any of the medical stuff for a week and I wanted to live in that head space a little longer...

Here is what I can tell you though... is that I can see how healing this trip was for me because before Disneyland I would have been a hot firey mess reading that paperwork and I would not have been able to set it down when I got upset. It would have sent me into a tailspin for days... I have thought about it very little this week. I talked about it with a couple of friends and talked to our PT about it but otherwise I have not thought about it much. I am in a much healthier place after this trip. Being an American we are not taught rest well... we miss the Biblical concept of Sabith and think that we know better then God... and I as a task oriented person am really good at thinking that rest is a waste of time... but man I can feel how much better I feel after setting down the baggage for the week and just enjoying my kids. I felt really guilty before we left about taking this trip... I always worry about using services from a non for profit because I know money is tight in the NFP world... and I worry about us using money that someone else needs more but man I am so thankful we went... I feel like I am a better human after. I also feel like I am in a much better place to go into all of our appointments in April and be able to not feel as defensive and that will help me to be able to better communicate with our team to work together to make the best choices for our kids.

We did get Jilli's neuropsych testing back... and it looks just like I would have thought... cognitively she is ahead... fine and gross motor she is very very behind in (like 3rd percentile)... once again I am not sure how our big team at NIH calls that normal... but the neuropysch reports was one of the things we feel like best displays our kids abilities and displays them accurately... and it even speaks kindly of us and our home team... I felt like they were one of the only teams there that seamed to understand that the girls might be able to do something once (like jump) but can not repeat it over and over like their peers can. This is a huge key in the kids.

We also met with our OT about the hand splints NIH made the girls... they are falling appart already and our home OT thinks they are way overkill for what the girls need. Yes they both over extend their thumb but there are less obstructive ways to help that. We are going to talk to our rehab team in April about it but as of right now we are not using them. Our speech path also looked at our audiology results (we got the actual ones) and said she is not worried as she was at first but that we def need to meet with ENT because the loss is in both ears that it might be effecting more. We see ENT in a couple of weeks.

This week we had a pretty calm week. Jaime and Jason and the boys came over on Tuesday which is always a big highlight to us. Wednesday the girls had PT/speech... we were all going to go to church that night since we missed on Sunday but Lydia was feeling yucky so just Brent and Jilli went. Lydia hasn't felt horrible this week and has times when she is fine and then has other times were she is uncomfortable. She had a pretty good bloody nose the other day and mainly is just cough at night... she lost her voice last night and sounds like a frog today but is playing like normal today and dancing with Elmo so I am not super worried and we haven't gone to a doctor because I don't think there is anything they can do... this is just what her body does.

We also have set up for nest Wednesday for the girls to head to the outpatient lab to work with the child life therapist to help the girls develop some new strategies to help with the blood draws in April... our blood draws at NIH were horrible and just the word lab makes Jilli very upset right now so we are going to try to help her so on Wednesday we are doing play therapy to help her feel more comfortable and then an actual lab draw the following Tuesday. I am so thankful for our home hospital and how they see the hardness of what happened at NIH and are wrapping us in love and helping us come up with plans to best help the girls. I can not express enough how grateful I am!


So thats our trip and how things have been since coming home. I am so grateful for this trip... for Make A Wish, Disneyland and Knotts for all the amazing experiences they have to our family. Jilli and I sat down yesterday and worked on thank you notes and am just waiting on picking up pictures at Walgreens to mail them out. Thank you to everyone who donates to Make A Wish... I can tell you how much it helped us all set down a lot of emotional baggage and heal our hearts. I feel like I can go forward as a better person because of this trip and I know that I can see Jilli handling things better too.