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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!