Home

Brent and I were talking this morning and we both agreed that we feel like we can't articulate the pain we feel after the last couple of weeks.

I think part of it is that the pain we are feeling is different from the pain we were expecting to feel... we were expecting to feel pain if we left without a diagnosis but honestly that part doesn't hurt much.

I look at the past two weeks and see all of the ways we were prepared for this before we ever left. I remember the first time we looked at NIH and saw that when you go there you stay at the Children's Inn and how we felt like community living like that sounded hard... well fast forward and now we stay at rmh all of the time... community living is normal in our life. There were still a few parts of the inn that were hard (and honestly I am thankful that rmh is normal to us because we knew how to do a lot of things there that I feel like rmh is better at explaining to you when you check in) but we would have been lost without our past knowledge. I see high school me who was not afraid to plan senor skip day to Chicago... and organized all of us taking the train there... that life skill payed off when trying to figure out the Metro. We have taken the girls to Disney a few times meaning we have flown with them before so we knew how to get through TSA effectively and the girls knew what to do. And we have had 6 years of working with doctors which gave us skills for this adventure.

In many ways we were prepared with skills to be able to do this trip...

We also have had 6 years of doctors telling us that there are odd results but that nothing joins all of the odd together nicely. That is normal to us at this point and does not sting like it once did.

I think the pain is coming from the feeling of not really being seen, heard, and understood.

We felt like some things that we have worked really hard on were turned in our faces... like by all logical measures both girls should have horrible oral aversions... especially Jilli who, when we did oral trials would looked like she has having seizures, but after all of the testing we figured out that she was not actually having seizures but instead it was her body's pain response to eating. Now Jilli knows not to eat food but that is different then an oral aversion... and we worked so hard at that is the case. Our home team sees all of the work and understands that we worked hard for that to be the case however the team there threw that in our face that since they don't have oral aversions that we must not have tried hard enough to help them eat orally.

I feel like Brent and I have done a lot of work to do the best things for the girls... to give them amazing experiences... to make medical things as fun as possible... to not make our house a sad and depressing place to be but instead to find joy in life...

I don't need ribbons or prizes for that... to me it is just part of being a mom... but to have that worked pushed back as us not trying hard enough feels painful.

I also think Brent and I have done a lot of the emotional work. We don't just sit and wallow... we try to work through the emotions... we try to be productive with the hard things... we take moments to feel the hard things and then we try to work through the process so that we can be as mentally healthy for our girls as possible. We are not perfect at it... and we mess up... but we try really hard... and it felt like the peace that our coordinator applauded me for that the beginning of the week was seen as a failure by others. Maybe its because they do not see peace often so they don't know how to take it... but one would think you would want parents in a mental state of peace... not take it as a sign of ignorance or apathy.

I mean we were told at one point that they were having a team meeting to figure out how to talk to us and Brent and I just felt dumbfounded... like we are not hard to talk to... we might disagree with something a professional is saying but we don't push back with yelling, instead we ask questions and try to explain our point of view... maybe they are not use to that but that tells me there is an unhealthy power structure if people feeling like they need to hold meetings with how to deal with parents to push back. 

There are parts of different disability communities that I have never really understood (particularly the deaf and limb difference communities) because of how some within those communities view themselves but I feel like I understand some of the emotion behind it better after these past two weeks.

But here is my choices in this...

Because in the midst of it and the last few days I have been questioning myself a ton... I am a very self reflective person... I can see my flaws glaring... and this whole experience really made me doubt a lot about myself... but I have a choice standing here...

Brent and I during Jillian's first hospital stay looked at each other and said we had a choice... that stay could either break us or make us stronger... and we made the cognitive and verbal choice that we were going to work towards strength in God...

And right now we can make that choice too...

Are we going to be broken from the pain or are we going to keep marching forward...

Here is the thing about marching forward... it doesn't claim that the pain never happened... it might mean walking with a limp for a while during the heart healing process and that is ok... but it means that we are taking the steps needed to work on our mental health while we work to do what is best for our children.

I can look at it all when I feel like the world says we can't have peace because our kids are undiagnosed and hold strong that my peace comes from Jesus and the world can try to shake that or feel confused by that or be annoyed by that all they want but that it is not my job to serve the world. 

And it means that my heart is craving two things...

1. I am normally not a hug person... I was scowling FB this morning and saw a post that said The average person craves 13 hugs a day, the average hug is 3 seconds, and a 20 second hug can have healing properties... normally a 20 second hug sounds horrible to me... however right now I am craving hugs... when we landed back home I just wanted to drive to rmh and hug our family there and I wanted to go to our hospital and hug all of the amazing people we have on our team... we didn't do that... but for someone who normally finds hugs to be awkward, I found it very interesting that is what my heart wanted to do.

2. My brain frequently has music playing and what I am finding since we got on the plane home is my head is playing a lot of worship music... especially worship music that has helped me through hard things before.

My top songs right now:

- Paint Your Picture by Julie Meyer 
- All My Devotion by Kristine Mueller
- King of My Heart by Sarah McMillan
- So Will I by Hillsong
- Called Me Higher by All Sons and Daughters
- What a Beautiful Name by Hillsong
- Even When it Hurts by Hillsong
- Do it Again by Elevation Worship 

I am so looking forward to worship at church tomorrow... my heart is craving it.

And I can choose to chase after that even when my heart is limping...

Also a huge thank you to Annette who not only took care of getting our mail for us while we were gone but also made food for us so we had some meals to come home to. I am so thankful for her!

NIH Day 11 and 12

I don't think I have ever cried before when I saw our home state but today I did... I wasn't expecting that but I don't think I have ever wanted to be back home so much in my life. Any other plane trip I have taken flying back had a mix of emotions of being sad I was leaving a fun place and happy to be home... this was different.

Yesterday we had another long day. We were moving a little slower in the morning since our schedule didn't have anything listed until 10am however I realized at 8ish that Lydia's skin biopsy was never done and that needed to happen before we left so we headed to the hospital to make sure they were not trying to do that then and it just wasn't on our schedule.

It was snowing at NIH so only essential personal was reporting to the hospital... this meant issues with buying coffee :(  We got settled in the room and hung out until almost 10 when transport came to get Jilli and I for an EMG.

Jilli had an EMG when Lydia was only a few weeks old. That test created a lot of anxiety for Jilli and I so I was not looking forward to doing it again but Brent was trying to work as much as possible and I also knew that in really hard moments there is something about having your momma and felt like my kids deserved to have me help them through it even if it was really hard for me.

We got up to the room and the first part went fine... I was able to distract Jilli and it went smoothly... then we transitioned to the needle part of then test and Jilli became very angry and as much as I tried I was struggling to distract her. The doctor called our coordinator and she came up to help. I also called my dad on Facetime to talk to Jilli. We all worked together to keep Jilli as calm as possible during the test.

Jilli finished and the doctor said that she was able to take Lydia right away instead of waiting until the afternoon so our coordinator and I went down and dropped Jilli off and picked Lydia up. Lydia was less happy from the get go. I Facetimed my brother for a few minutes and then my mom. We all sang songs to try to distract Lydia. It was not fun but we made it.

We then went back down to the room and someone from the lab met us to say that the girls both still had more urine that needed to be collected.

We then hung out in the room for a while until the NP and head doctor came to meet with us for our wrap up meeting...

Their recomendations we are looking into are:
-looking into vitamin D levels for both kids because they were low
-Look into Lydia's fluid intake (we are meeting with the dietitian soon)
-talk to cardiology about doing a bubble echo
-see ENT about Jilli's hearing test results
-look at leg bracing options
-look into restless leg syndrome because the sleep study diagnosed that however it really doesn't make sense for Jilli and the treatment that they normally use wont work for her based off of blood work
-talk to GI about changing laxatives

We talked about the lab tests that have come back already and some odd tests have come back strangely but nothing in a way that is a definitive answer about anything.There are still many, many tests still out pending and several will take many months to come back.

The quality of life conversation went the way I was guessing it might.

Then they suggested some tests at home that we had already done and we started scratching our heads and they started talking to us about things that we have talked about at length with out home teams and if they had even glazed the notes they would have known that. I do not expect anyone to know 100% of the girls medical record because even I at this point forget little details but these were big things... but the more they talked about testing and the more we asked questions we realized something... they did not have any of our pulmonary or GI testing... they didn't have the 24 hour pulse ox studies or all the GI motility testing. We had talked about these tests earlier in our visit and were blown off but if they do not have any of that data that explains a ton of the things they were saying like when they kept saying that our doctors didn't have any data to support the interventions the kids are getting... well without that data you are right, but that data shows all of those things. When I am frustrated about is that instead of asking if we had any of those tests they assumed we didn't and made assumptions about our doctors and us that were not fair or right. They also made recommendations based off of the data they had (missing all of the big things) and those recommendations did not match what we were telling them. There were several recommendations that if they had asked questions they would have understood what we were already doing (like how we monitor pulse ox) which might have prevented many of the frustrations. There is part of me that feels better that the recommendations that they had made about some of those things were with missing information but it also makes me really mad that they just assumed a lot of things without  asking. It felt a bit like they had a preconieved notion about what medical families were like and based off of that they had certain ideas about us before they ever met us and some of them were not fair.

The NP went up to to the stuff to do Lydia's skin biopsy and the doctor stayed and talked with us about education and it felt like for the first time in 11 days that he was maybe getting a glimpse into who we are.

We then did Lydia's skin biopsy. Once again, not fun, but we made it.

After they left I realized they mentioned nothing about Jillian's crashes in the wrap up meeting... and honestly the entire time we were there everyone seemed rather uninterested in them... which boggles my mind... I sent our coordinator a text asking if there was any  insight and she said that the NP would get back to me.

We were able to collect Jilli's urine earlier in the day however Lydia had not peed in hours so we were waiting on that. We worked on discharge and packing up the hospital room while we waited on urine. We got the urine and then waited on the formula and then left the hospital for the last time to head to the Children's Inn.

Because it had snowed dinner was cancelled so we found a freezer pizza and ate that and then headed to the room to finish packing. We asked how we checked out in the morning and got a really unclear answer. Some things about the housing are still confusing to me lol. We got the kids hooked up and to bed and then tried to get to sleep.

I woke up at 5am to make sure everything was set. We had gotten the kids up and moving and dressed. We were told the cab was coming at 6:45 for us but my phone rang at 6:15... the cab was there and waiting. Crap... we got moving quickly and got outside.

We flew out of a different airport then we flew into. There was a baseball team trying to check in at the same time which made things interesting but we made it through check in and security was not too bad.

We then got settled and found some breakfast. We were able to pre board the plane and thankfully it was a very light flight. We switched which kids we rode next to and overall it was a really smooth flight. As I was sitting there I felt like God kept reminding me that He is good even when I do not have all of the answers. My head kept having different worship songs play... it was like a worship service in my head on the plane. I felt very at peace about coming home without an answer. It is not that I am not still frustrated about how several pieces went (and thankful for other pieces, especially or coordinator) but that neither of those things changes God's goodness.

We landed and found out that the continuation that the plane we were on was being cancelled due to weather so we unloaded the plane to a lot of people finding out that their flight had just been cancelled.

We made it to baggage claim and got our bags and headed to the car. Our coordinator sent a text saying asking if we landed safely. I responded that we ahd and she sent backthat she walked to our home genetics and toe expects a follow up soon. I am not sure who that follow up is coming from, but we will see... at this point in the week I don't even know what to think.It was very sweet of her though to make sure were were safe.

 We went through a drive thru on the way and then got home to snow.  Several people tried to get our snow taken care of but it just didn't work out which is fine so I dropped Brent off at the top of our driveway because the van wouldn't go down and decided that I would run to the store with the girls to keep inside while Brent cleared the driveway. A few minutes later Brent called... we went into the house and it was 48* inside so he went looking for the problem and found that we had not propane. AHHH. We just had propane delivered in December but it has been so cold that we went through a lot. Brent called the propane company to figure out a plan ($150 delivery charge to get it delivered today or it wouldn't come for another 7 days...). While Brent was working on figuring that out I took the girls to my parents to keep warm and inside until we had the driveway clear and had heat again.

Brent got it all worked out and around dinner time the kids and I headed home. Thankfully we now have heat!

I am very very tired but we are still running off of the craziness. Hopefully tomorrow we can start to decompress. Off to bed... I am falling asleep while typing.

Quality of life

Brent and I are also participating in a caregiver study with NIH to help them figure out ways to help caregivers. We had online interviews and surveys, wore heart monitors for a few days, did 5 spit tests and lab work. Yesterday I had my in person interview and sometimes just talking... even in an interview... can help you process feelings.

Something that came up with quality of life... those three words have come up a lot this week... in a frustrating way and I am pretty sure in a meeting we have this afternoon it will come up again... but here is my struggle...

The medical world it feels like quality of life is a back and white check box thing...

have a feeding tube? subtract from quality of life

use oxygen? subtract from quality of life

use a wheelchair? subtract from quality of life

And when people view my kids this way I get very angry very fast because it is not fair.

My kids do not have a crappy quality of life because they use those supports...

In fact they have a better quality of life BECAUSE they use those supports...

Without a feeding tube they aspirate everything and it is really hard to be a kid with pneumonia constantly.

Without oxygen my kids don't have enough energy to play and they just sit and look at the wall.

Without a wheelchair Jilli gets too tired in public to interact with her peers, having wheels gives her the chance to socialize.

I think we have shocked some people here on our views on this and I think there have been a few people that have not know how to take us because of it but my goal is to push this farther then just us.

This view NEEDS to change in the medical community. Supports need to be seen for what they do for someone, not just what they might take away. I have also seen medical providers advocate taking supports away before someone is ready (we have tried before based on medical advice) in the name of quality of life in ways that can actually be harmful to the person. I am not advocating for keeping someone on supports they do not need or over supporting a person, what I am advocating for is a perspective shift on quality of life so that decisions are made in a more neutral position. 

Quality of life needs to be looked at based on the person, not the supports. I completely understand that going on oxygen for some people does negatively impact their quality of life, and that can be true for them and opposite for us... medicine is a lot less black and white then we like to pretend and we need to look at people as people.

This would also massively shift society's perceptions of people.Maybe it would change those looks of pity in the grocery store. Maybe it would make the world more inclusive. Maybe it would open up doors for kids like mine. This could change a lot.

And I think it could be powerful for parents of kids with medical needs. I am in a lot of support groups and I see how often people think supports are the end of the world... how their life will never be ok... and I just want to scoop those parents up and give them a hug and tell them to not let anyone discount their child, not even them, because of medical supports.
And then I think we could have more constructive conversations about the hard aspects of life without everyone feeling like the world is crashing down on them.
I think perspective in medical parenting is huge and honestly I am thankful for the gift of the perspective we have because I can't imagine how aweful life would be without it. But I see in the medical community that this perspective isn't the norm and I would love to give this gift to everyone. This perspective doesn't mean you just sit down and stop advocating for your kids and working for what is best for them, I would actually argue the opposite is true, but it comes out of a different place with a different mindset.

There are all sorts of things I would love to change in this world, I am a person who takes social justice to a deep level, but man if I could move the needle on this, even just a little, I can only imagine all of the change that would stem from it.

NIH Days 9 and 10

Yesterday we decided to head out again and explore a little but we wanted to be wise about time and energy so we took the Metro into Bethesda and walked around an outdoor mall. We found some coffee... went to an Amazon book store... Brent drooled at the Apple Store while I drooled at Pottery Barn... and then we succeeded at our goal, we found yummy food! While walking around we smelled an amazing smell and decided that wherever that smell was coming from was where we would eat. It led us into a little French restaurant. Its tasted as good as it smelled and the prices were very reasonable (especially for the area). They also had huge macrons which are one of my favorite things in life so Brent and I split one. We picked up a cupcake and a buckeye bar at a local bakery and then walked back to the Metro. Brent worked from the room for a while and then I hopped onto a phone meeting I had at home. Overall it was a really calm and relaxing day.

Today we all needed to fast for labs which meant Brent and I could not eat after midnight and the girls needed to be switched to water at 3am... I woke up at 3am however I could not remember why I was awake and fell back to sleep until 5 when I woke up in a panic. We switched the kids to water and I tried to fall back asleep but that did not work so I started our first test of the day... Brent and I had to do 5 saliva collections today... I never understood how hard it is to fill a vile full of 1.5ml of spit before lol. I then started getting moving for the day.

We headed over to the hospital and headed to labs... rough would be a good word... It took 2 sticks to get my 5 viles... and 2 sticks to get Lydia's 18 viles... and 4 adults to get Jillian's 18 viles... Brent was fine but the whole thing took almost 2 hours. I was sweaty and SO hungry/tired/exhausted buy the time we were done! We came back to the room and transport picked us up to go to the ped clinic... we got there and they were super confused as to why we were there. After a few phone calls they figured out that the neurospych team were coming to Jilli's hospital room so we headed back there and Brent went to find us some breakfast (13 hours of not eating was creating a hangry Amanda!)

They started by asking us some questions and then Lydia, Brent and a tester headed to the playroom while Jilli and another tester worked in her room and the head tester and I headed to a different room to go over developmental questions. We all worked together for several hours. When they left they left me with a stack of more questionairs to fill out.

Our coordinator came to check on us while Brent ran to pick us up lunch and Jilli a different tube belt because her's was falling off. I worked on paperwork and the social worker came in to check in as well as the teacher from the school. Then transport was back to take us up to photos. Our kids were over today by this point and had little want to have photos taken of their feet, hands, posture, height ect... but we made it. We stopped at the store and picked up NIH t shirts which Jilli had been asking about for days.

We headed back to the room and our team came to meet with us. They let us know that with the forecast the hospital will likely be working on skeleton crew tomorrow.

Then I headed with the caregiver research team for my parent interview which took a couple of hours. We got back to the room and waited on formula and then headed back to the inn.

When we arrived at the inn the  chaplin from the hospital was playing music with kids and volunteers were leading an art project. The kids bounced between the two and we ate dinner. Then we headed back to the room and Jilli opened one of her surprises from her friend Caroline and mail came with multiple fun surprises!

The kids are in bed now and I still have one more spit collection to do and then it is off to bed!

a stuffed version of norovirus lol... they had multiple different stuffed things like that

Normally they sleep elevated and they have both woken up most days with a stomach ache but they have also begged to sleep together this trip... normally Lydia will not cuddle with Jillian so Jilli has loved this

NIH day 8

Sunday we took a sabith... a day of rest. We napped and did crafts and watched movies. We recharged. We ate food because for the first time in days our bodies were calm enough to really feel hungry. We laughed as a family and were calm. We needed it.

This morning I laid in bed thinking (I've been waking up between 5:30-6 here time each day) about the heart challenges of the week. I know the communication challenges and the medical challenges... but there are always inner layers to everything a person does and I wanted to stop and reflect on my heart.

I was searching for a word to search on my Bible app as I was thinking about what was the cause of my heart to feel anxious. Sometimes we can look at the coarse of our lives and see the things that we struggle with and pick up and put down often. We all have those things that take different shapes given our life circumstances. I like to be in control... I like to be heard (if I feel like my being heard will not create conflict)... I like there to be a purpose... I like to look like I have all the answers... I like to feel like I belong...

I am a 9 with an 8 wing that sure is good at running to 6 when stressed (go look up the enneagram if that sentance looks like space talk lol)


The world trust came to mind as I was thinking so I searched that and Romans 8:28 came up... my least favorite verse in the Bible... I know strange verse to bug me... there are much more controversial verses but I am a heart person and I see where this verse becomes pretty on a coffee mug or tshirt but I struggle with the American interpretation of the word good. Good is very subjective. We don't ask our kids if they are making good choices... we ask them if they are making choices of integrity because what might feel good to them can change by the moment but integrity holds firmer. Good tents to be more of a feeling and only concerned about you. Good in our culture is self serving. I do not think what this verse is talking about is the American good... and I don't have issue with the verse itself, I have issues with the way the American church uses it because it often turns into a self serving verse.

The word trust wasn't getting me to what I was looking for, so I turned to searching for identity... that didn't get me much so I searched identity in Christ which brought me to a Bible study. I started it and the intro felt a little flowery... a little too Bible study ish... but Isaiah 43:1-2 really popped out at me...

But now, this is what the Lord, your Creator says, O Jacob,
And He who formed you, O Israel,
“Do not fear, for I have redeemed you [from captivity];
I have called you by name; you are Mine!
² 
“When you pass through the waters, I will be with you;
And through the rivers, they will not overwhelm you.
When you walk through fire, you will not be scorched,
Nor will the flame burn you.

I was reading in the Amplified version because sometimes I think the wording of that version makes me think differently then the NIV.

What I also appreciated about this verse was that it is not flowery... it is very far from prosperity gospel or "girl, wash your face"... it is a reminder that you are God's in the midst... it is not the false lie that if you work hard enough, do enough good deeds, fake it til you make it that then your life will be perfect... that is just a bunch of crap American gospel (side story, we turned on the TV the other day and a "christian" TV show was on and they were reading prayer requests... but only if you donated $100 to them... I don't think I can eloquently explain my hatred of that... there are some pretty strong Bible verses that cover that but we as Christians often shrug it off as not wanting to hurt our own while we throw arrows into culture... the Bible is pretty clear though about which one is worse for the Kingdom... ok I'll get off my soap box now).

God walks with us in the hard. The Bible is not a story of if you believe good enough then you will have a life of flowers... that is a super twisted way to look at it... it is that God is with you ALWAYS!

As I was laying here I was trying to remember what God has taught me in the past. There are so many lessons that God has walked me through multiple times and who I find my identity in is one that I have to learn often. It is so easy to find our identity in other things. I have to run to God to find my identity in Him but I can easily pick up other identities myself.

This post is more of a reminder for me. A place to look back to when I am struggling with these same lessons again (because as I get older I am trying to have more grace with myself about having to learn different levels of a lesson and look at it that way... I have learned about my identity in Christ multiple times but each time I am learning about it again I see a different angle... its not that I am a failure for having to work on the same topic again... its that I need to learn a new aspect of it or dive deeper then I was ready to before... or sometimes it is that I need a reminder about what I have already learned). I also can struggle with writing things down and remembering things so this post is to serve as just that because this morning as I was thinking about what God has taught me before in these areas I could remember that God has taught but I struggled to remember what I had learned... a lot of the Bible is people writing down what God was teaching and what they were learning as a way to remind themselves the next time they needed that lesson again. In the midst of it we think we will never forget about something but when we need it again it can be hard to remember.

God is moving here too... just because there is a lot of medical stuff being worked on right now that doesn't mean that He stopped working on our hearts. My mind has wrestled a lot the last 24 hours as I process things (I can be so quick to doubt myself) but for this moment I am going to rest in knowing whos I am and that He is always with me.


 

princess Jilli

Breakfast at the hospital cafeteria

I love that the door openers here are non touch!!!

Dinner... there is not dinner at the inn Friday, Saturday and Sunday but thankfully there was pasta in the cupboard