But also I really want to be able to look back at these thoughts in another season and see what God did. The things He is doing are too important to not put a bookmark in this chapter...
So buckle up...
We are going to try titles to group things together a bit....
Home Team Follow Up
I was fortunate today to be able to speak with our head team here over the phone. I am so thankful that they took time to talk to me today. I am a person who hates to feel like I am bothering people and will often hold back on contacting people too much to try not to bother them but it always means a ton to me when someone can tell that there is something going on and reach out before I have to become a pain. I know that this entire process has been a lot of work for them. They had to help us get everything together to go and then have had to help with a lot of follow up since we came home. They have been then ones from a medical standpoint that have had to help us a lot these last few weeks at home... I can not honestly think of another time that I have called one of medical professionals crying and they had to deal with my calling them that way a couple of weeks ago.
But they called today because I wanted to know what happens to the NIH records as they come in since this doctor is getting all of the copies that we are. I have a lot of faith in our current team and I know they disagree with some of the recommendations but I worry about someone else someday not knowing everything surrounding all of this looking at those records and thinking that since NIH is NIH that those recommendations are gold. I just need to look out for my kids.
The doctor started the conversation very kindly by asking how I felt about the visit at NIH and what my take aways were. We had a good conversation about what we were feeling and our worries. We talked about plans moving forward. I feel like NIH looked at several things as we were not willing to have conversations about supports we had in place when that is not the case but how we felt was that we came there for them to help figure out the biological reasons behind needing the supports and we felt like they were not doing that, that instead they were arguing that they didn't understand why we needed them in the first place when we feel like we have abundantly proven the need and they were throwing the evidence out but also telling us that those were the tests that we needed to do to have the evidence. We felt like we were going in a circle that doesn't help out kids. I understand an objective view but I also operate under assuming positive intentions about others and you assume that what they are telling you is true and what they are doing has a reason until proved otherwise... but that is not how we felt like we were being treated there. It helped to get those feelings out to our team here so they understand where we are coming from.
We talked about how we will be thankful for whatever results we do get and any information we end up learning from this but that for right now, for the most part we are continuing as is for most things. There is still some conversation about one test and we will make that choice over the next 6mo of what the plan is if we think the test is appropriate or not. I also told them that right now I am a bit in momma bear mode because Jillian is struggling with all of the testing that was done there and we are seeing that displayed in multiple ways and are working to get her some help expressing her feelings in that but that means that night now I am going to be less open to testing then I normally am. We are normally very open to whatever our team asked of us... the only test I can think of in 6 yr that we have refused was Jilli's hearing test at our home hospital right before we left for NIH because we knew they were going to do more indepth testing there and it did not make sense for our insurance to pay for a test that we were about to have done for free. But I need to protect my children's emotional health right now and that means that for a little while I am going to be more selective about what testing we do and people are going to need to have really good reasons for why that test must be done right now. With time I am sure we will become more open again but sometimes for the best of everyone you need to huddle close and that is what I am feeling like we need to do right now.
We also talked about how I am ok with having ongoing conversations about what supports do and don't need to be in place for the kids based on what their bodies are telling us. We have discontinued multiple medications and supports over the years either because our kid not longer needed them, they needed more of a support or they needed something different. I am the one who has suggested many of the medication removals over the years. But what I will not do is have conversations just based off of normal without looking at what their bodies are telling us... that is crazy and a why that my kids can get hurt really fast. Also we need to take all evaluations logically, methodically, and holistically. Apparently (I don't have the data) Jilli did ok during her sleep study without oxygen.... however the entire next day she kept randomly falling asleep, was showing signs of being beyond exhausted (any parent can tell you when their kid has hit that point) and struggled to do normal tasks for her. Also apparently she had restless legs during that night which she never has while on oxygen... so we need to look at all of that data together to give us the real picture... I am not ok with just looking at one data point. We also know that there are night that her oxygen isn't working right or it get kinked or who knows... but we do know when her oxygen isnt working properly because she snores loudly (doesn't on oxygen) and her pulse ox drops... I know this because it drops low enough that it alarms and wakes me up... we need to take that data into consideration too. I will have holistical logical conversations... I will not change major things based off a data point that does not take everything into account because my kid is a whole person
We have to live like today
Maybe I am wrong in this view... I am just doing the best I know how with what I know... but we have to live like what is going on right now is what is until our children's bodies show us differently. We can not live in that "what if this all gets a lot worse" because it is really easy to get stuck there and then you can not see all the good into today. That is a really depressing outlook to have on life. On the flip slide we also can not live in "what if everything is completely different tomorrow" because it is not realistic and and would mean missing helping out children with the things they need help with today. We have found that for us the healthiest mindset to have it that until things are different that we are going off of what we know and what their bodies are showing us today. that does not mean that any time there is a hiccup in the road that we sit down and say that nothing is ever going to change... I very admittedly fought against that 2 yr ago when Jillian had her big crash and they were saying that she might never talk or sit again... but what that did look like is us giving her the supports her body needed that day and then reassessing moment by moment to see what the next step is. It means looking at the cycles and seasons as just that... cycles and seasons. It means that we plan for the future to look like what we are currently doing until they show us otherwise... and some people would push back and say that is hopeless and I strongly disagree because my hope in life does not lay in what my kids can or can not do. My hope does not lay in what supports we have to add or subtract. My kids quality of life does not get determined by their circumstances. My hopes for my kids do not lay in what they can or can not do... my hopes for them lay in what kinds of people they will be (and currently are). I don't sit around hoping for life to be different... I find the things to celebrate today... that doesn't make me blind to the hard things... instead that makes it so that my heart is in a different place where the circumstances do not get to determine my outlook on life. My kids are great people no matter how they eat, get around or how oxygen fills their bodies... none of those things determine or subtract their greatness... those things do influence them and it influences some of the things that they are passionate about... but we can choose to look at that as either a blessing or a curse and I choose blessing...
And dam it do not try to change that because you will be met with one momma bear who can be cuddly but can be fierce. One of the things that pissed me off so much was multiple people at NIH had the gull to say infront of my kids that if they just had their tubes and oxygen removed then they would be normal. 1) thats not true and ignores a lot of the other symptoms in their lives that have nothing to do with those two supports. 2) it defines them by their supports 3) don't you ever go telling my kids they are less then... that bear that comes out is not kind then. We have worked really hard to instill in our children that their differences do not make them less then anyone else because that is truth and I am not going to let someone come in and make them doubt that. It doesn't mean that we do not talk about or admit the hard things in our house, because we do but we instill in our kids that their worth is not based on what supports they need and that normal is just a setting on a dryer.
This does not mean that we seek out pain for our children... not at all... but it means that we don't see supports as a curse but instead a blessing. They help my kids for what they need today and we can be thankful for that. We don't hind who we are... we don't photoshop out oxygen lines, we dont hide in the house and we sure do not accept being excluded. I will not buy into the lie that if you dont not have the perfect American look that you need to be ashamed and void of joy... we can still have joy in the midst... and I sure do not need to spend my days sobbing the the corner to care about my kids... infact I care about them too much to do that, I want to be involved in their lives and treasure who they are... that does not mean that I am only a caregiver and not a parent like I was accused of at NIH because apparently I don't spent enough time distraught to make them think I care... I care so so much... many of the choices I make are not the easy ones for me in the situation but are the ones that are best for my kids. And that does not make me a martyr... that makes me a mom. It just makes me hopefully a non sucky human and if I do not get as distraught about it all as the world feels I should then I guess that is on them and not me... I will talk about the hard, thats fine, I will not give the situation all of the power over my life.
Lent
We got to a non denomination church... I have never really celebrated Lent. I know what it is, I get why it is on the church calendar but it is not something I have participated in. Ash Wednesday however is very lost on me... that is not something in my exploring of the Church calendar that I have gotten to exploring yet. However this year for this season I have made a focus. It can be easy to get caught up in the day to day things of life and not send the amount of quality time with my kids... I think any parent can know that you can spend all day with your kids but lack quality time in the hustle and bussle... so my goal right now to stop and see the beauty in my kids more. To really listen to what they say. To listen to their hearts.
Wednesday night Jillian was really struggling and was going between crying and getting in trouble but what I realized was that she was just struggling with big emotions and this was how it was playing out. So we stopped and instead of continuing the cycle Jilli and I went upstairs and turned on some music, got out the gell pens and colored together for a while we talked. I could have punished her for yelling and not listening or I could get to the issue at hand which was causing the problem. She knows that she shouldn't yell at us however at that moment that was the best skill she had to deal with the emotions she was feeling. Instead of having an aweful night it was redeemed and we got to the heart issues which will effect how things go forward.
School
We got caught up on school from while we were gone!!! It was a lot of hard work but Jilli and I worked hard together!!!
Bible Verse
I have felt like God has brought me to a few specific passages lately... all of them are ones that I knew at least a phrase out of it but not the entire passage well. He has taught me so much! I was feeling very accused about how I was praying about this situation... not by any person but by the accuser... and I could feel God telling me to abide in Him and He brought me to this amazing verse about prayer... but I decided to read the whole verse for context because so many of the coffee mug verses are taken out of context so I am working harder at learning contest because then it is easier to learn God's true intent and not just how I want to use a verse in a situation... I really want to get out of the Christian Bible verse catapulting competition that people do to prove their side and views and to do that I am trying not to read single verses but instead passages. So I came to this passage... not they funny thing is that my least favorite verse is in this passage which I didn't realize until part way though... funny how God does that...
Here is that passage... maybe it has something to tell you right now too:
Romans 8
Therefore, there is now no condemnation for those who are in Christ Jesus, 2 because through Christ Jesus the law of the Spirit who gives life has set you[a] free from the law of sin and death. 3 For what the law was powerless to do because it was weakened by the flesh,[b] God did by sending his own Son in the likeness of sinful flesh to be a sin offering.[c] And so he condemned sin in the flesh, 4 in order that the righteous requirement of the law might be fully met in us, who do not live according to the flesh but according to the Spirit.
5 Those who live according to the flesh have their minds set on what the flesh desires; but those who live in accordance with the Spirit have their minds set on what the Spirit desires. 6 The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. 7 The mind governed by the flesh is hostile to God; it does not submit to God’s law, nor can it do so. 8 Those who are in the realm of the flesh cannot please God.9 You, however, are not in the realm of the flesh but are in the realm of the Spirit, if indeed the Spirit of God lives in you. And if anyone does not have the Spirit of Christ, they do not belong to Christ. 10 But if Christ is in you, then even though your body is subject to death because of sin, the Spirit gives life[d] because of righteousness. 11 And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of[e] his Spirit who lives in you.
12 Therefore, brothers and sisters, we have an obligation—but it is not to the flesh, to live according to it. 13 For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.
14 For those who are led by the Spirit of God are the children of God. 15 The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship.[f] And by him we cry, “Abba,[g] Father.” 16 The Spirit himself testifies with our spirit that we are God’s children. 17 Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.
Present Suffering and Future Glory
18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that[h] the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.
26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
28 And we know that in all things God works for the good of those who love him, who[i] have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.
More Than Conquerors
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:Songs
I have always been drawn to music... I have written about that many times before. There is so much emotion in music. The problem is that sometimes it can give you a false feeling of connection and depth that is more connected to the emotions then the depth... let me explain. I had the steriotypical evangelical upbringing except my parents are moderates instead of married to the Republican party... I went to summer camp, retreats, concerts... may of them were amazing and taught me so much and I am so thankful for them... but sometimes what can happen is there starts to be a high that comes from those events and they make you think that those are the moments that you are closest to God... they can be the moments were you stop and listen to God like you do not in your normal life however you can not live off of the highs or you are stuck looking for the highs all of the time instead of deep relationship. There have been times I have done this... there are certain parts of Church world that worries me because they live off of promoting emotion instead of depth.
But that doesn't mean that music isn't still important... worship is still really important... God calls us to it. Music as an art is beautiful. We are taking Jillian to her first concert tomorrow. We are so excited!!! We just need to be mindful to not use music as our only connection to God but He does definetly connect with us through music.
I am really behind on the podcasts that I listen to with being gone and when my head feels noisy sometimes I listen to podcasts less but today I really felt like I needed to listen to the new Unedited with Bryan and Katie Torwalt on my drive to my doctors appointment (my last appointment with my doc because he is leaving... I need a new doctor as I currently have none for myself...) and man that interview was what my brain needed to think about. So when the interview finished I downloaded their new CD...
Here are a few lines that really stood out to me...
Praise before My breakthrough:
I know the tension of the now
I don’t always understand
I don’t always get to see
Everything
When I’m holding up my hands
When I’m counting every breath
Lord, all I need to know is
You choose me
You choose me
I’ll praise before my breakthrough
‘Til my song becomes my triumph
I will sing because I trust You
I will bring my heart
I will lift my song
When I’m listening for Your voice
And I’m shutting out the noise
I know that you will speak
When I’m living out my faith
When I’m stepping on the sea
I know You take my hand
And walk with me
My Hallelujah:
Peace, be still
Calm this soul
I need You here now
Restore my hope
I confess I’ve been afraid
Remind my heart, Lord
Increase my faith
So I will run into the waves
As courage comes to take fear’s place
With perfect love, perfect love
O, what can take away
My hallelujah
No darkness can contain
My hallelujah
Your cross has made a way
For my hallelujah
My hallelujah
You give life
No man can take
No power in hell
Could separate
And who can stand
Against Your might
With armies of angels
By my side
Prophesy Your Promise:
I found You in the middle of my mess
You had been there all along
Open arms and open heart,
You called me in
You didn't hesitate at all
You had been there all along
Open arms and open heart,
You called me in
You didn't hesitate at all
And the lies I once believed
They crumble
With the weight of Your truth
And the fear that gripped my heart
Is arrested
So that I can see You
They crumble
With the weight of Your truth
And the fear that gripped my heart
Is arrested
So that I can see You
When I only see in part
I will prophesy Your promise
I believe You, God
'Cause You finish what You start
I will trust You in the process
I believe You, God
I will prophesy Your promise
I believe You, God
'Cause You finish what You start
I will trust You in the process
I believe You, God
You set a table in the middle of my war
You knew the outcome of it all
When what I faced looked like it would never end
You said, watch the giants fall
You knew the outcome of it all
When what I faced looked like it would never end
You said, watch the giants fall
Fear can go to hell
Shame can go there too
I know whose I am
God, I belong to You
Shame can go there too
I know whose I am
God, I belong to You
Be With Me:
Be with me
I just want You to be with me
I don't need You to do a thing
Your love is enough
I just want You to be with me
I don't need You to do a thing
Your love is enough
We have had a kinda calm week here. We have Jilli's Make a Wish meeting and Jilli has been really tired this week so we have taken some things slow this week but we did little fun things like making muffins together and doing her Tiny Superhero mission. Lydia even slept half of two nights in her own bed this week!
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| Jilli drew a picture of Switchfoot in anticipation of the concert |
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| How a lot of our week looked |
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| Jilli at my doc appointment today |
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