The most Beautiful Thing I've Seen

I started reading the book The Most Beautiful Thing I've Seen earlier in the week... for a self proclaimed non reader I'm 143 pages in already in less then a week... for someone who a year ago didn't remember the last book they actually finished this book is worth my time.

The book is written by Lisa Gungor of the band Gungor... I have felt a connection to that band since I heard the story behind Beautiful Things (click HERE to read about my connection) and while the band has taken some heat in the Evangelical world, that didn't matter to me, there story touched me and helped me though a hard time.

I was listening to Relevant a while back and they interviewed Lisa about her new book and by the interview's end I knew I wanted to read that book (click HERE to listen to the pod cast ).

I picked it up last weekend as stared diving in and have found myself intentionally carving out time to read it. My mom and I had a long conversation about the first half of the book (I joked that I doubt Lifeway will sell it... a quick Google search sadly proves me right) but mom and I have talked a lot lately about de constructing and reconstructing faith... moving past Sunday school answers... moving past safe to real faith. I am realizing more and more that what feels most unpalatable to me about the American church is the lack of depth, but that I play into that too, because Sunday School answers feels safe... there are stickers, good jobs, and only surface relationships. My heart craves for more... yet I run to safe, yet yearn for conversations deeper then fine. (Now the Switchfoot song More Than Fine is playing in my head) This book has been a look at deeper then fine, it has depth and rawness to it... she states whats hard for her without people saying she is whining... I've really struggled lately with letting anyone in past "fine," part of it is some recent hurt in that area... part of that is I find if I tell people what is going on in life that if it is not all sunshine and rainbows then you are seen as negative when all you are doing is stating facts about life, and then I close up because if someone can't deal with me saying a doctors appointment was hard how are they going to deal when I state that a genetics appointment rocked me to my core and made me ask a lot of questions about God that I have never felt safe asking... Sunday School answers and my questions don't mesh nicely together... it starts to feel like the world is living on surface level and I am over here debating the guts of life... that my option to stay at surface level left a while ago (I was there... I get how safe that feels, when my college friends started asking questions that didn't have Sunday School answers I was SO uncomfortable... and I was the Bible study leader!).

Tonight I am probably in a more emotional place then normal... we just got home after 8 days at rmh, I am pretty positive I have an ovarian cyst (I've had many of them in my life, I know very well what they feel like... I took something for pain... I never take stuff for pain)... and last night was scary.





"Two nurses came to take her. They smiled at me and worked so swiftly I realized how often they do this sort of thing. Handing her over to a stranger to cut her open was hell. I gave up all control and was left only to wait. How would I wait? How would I stand here and open my hands this way? I followed as they walked down the hall, then the nurses went through the double doors. The doors closed too fast and hard, and I just stood there looked at my blurry reflection in the stainless steel. I couldn't believe that reflection was me. I couldn't believe I was here and my girl would be opened up on a hospital bed without me by her side for comfort or to hold her if she had her last moments in this world. Strangers weren't supposed to be there if that happened. It was supposed to be me holding her, lettiner her know she was loved. I felt helpless."
"And I'm beginning to see that I am the sick and she is the healing"

-Excerpts from "The Most Beautiful Thing I've Seen"

Those excerpts brought tears to my eyes. I sat here thinking about all of our surgeries... all 11 of them between the two kids and the talk of another one soon for new ear tubes. I started to question the tears... I know what she is talking about, I HATE the one hallway at the hospital, last time I walked it alone, I felt like I needed to be strong, I've done it enough times I don't need anyone to show me the way to the waiting room, I think I more had a angry look, its the only way I could hold back tears. But sometimes in my head I feel like I should be good at this all by this point. I so often feel like I have to be the strong one in all of this... strong to support family and friends... strong to support the diablities community... strong to support the random stranger who asks me repeatedly if the girls are going to "be alright"... whatever the crap that even means... that just leaves me perplex on what to say... how is it my job to comfort strangers about my kids health?!

 I thought as I read about how none of our surgeries have been big surgeries... sure my kids are each sleeping hooked up to multiple things right now but I've sat with a friend while their kid was in brain surgery, we haven't had surgery like that, why is this excerpt getting to me?! 

And then I remembered how last night was hard and I really just haven't dealt with that. Both girls had their gj tubes changed on Monday late afternoon. That is done in IR and we stay at rmh for 24hr after to make sure all is well. We do this every three months. While this is normal for my kids, Lydia walked right up to the table herself this time, neither or them cried at all, the most fuss either of them made was Jilli said once that this wasn't what she wanted to do, but then she went back to playing youtube on my phone... it can be a little hard on their bodies having something that is 22cm long pulled out and put back in. 

Tuesday both girls had a great day. My mom came up to rmh and the girls got to take part in the fare at the hospital which they loved! One of the managers at rmh asked if we were leaving Tuesday night or just heading out early Wednesday morning. By Tuesday night I was tired... I wanted my own bed, my own coffee and as much as rmh is amazing, communal living is just an interesting thing. We have great friends at rmh and Jilli was loving being there. The staff was amazing as always and they even made Jilli a little manager sign and let her help them. Jilli thanked me Tuesday afternoon for giving her one of the best rmh trips ever. I was still ready to just head home. I knew my to do list... I know in my head I feel like a constant state of feeling bad at rmh that I am not getting stuff at home done and then getting home and feeling like a failure because the house is never clean to my standards and the standards I feel the world has for a house. It leaves me in this perpetual state of wanting to be home to clean and run away from the mess. 

So we decided to head home Tuesday night after Jilli did a little art therapy. Jilli complained while we were checking out that her stomach hurt but we thought that might be due to her not wanting to leave her friend. We packed up the car and headed out. Lydia fell asleep shortly into the drive and Jilli complained about my choice to listen to a podcast but spent most of the time looking out her window but as we got closer to home she started crying off and on that her stomach hurt. 

We pulled in the driveway and Lydia woke up so I brought her in the house first. Jilli was mad at me that I wasn't bringing her in first. I then brought Jilli in and she curled up on the stair crying that her stomach hurt. I got a few things in the house and then helped her upstairs. We changed her diaper and worked on getting a show on for her and she was crying off and on but then she started crying really hard. I asked her to show me where it hurt and she pointed about a half inch below her tube. I took her pad and belt off and I touched the spot and she jumped... I've never seen her jump like that before. She was now screaming with her legs bent up (like the inverted fetal position). Brent got home and ran upstairs when he heard her. She wouldn't let him touch it. I called my friend Stacy to have someone to talk to who wasn't having a child screaming at them to get some clarity and we both agreed that it was hospital time. I started to dial the phone to call our team and Jilli passed the largest amount of gas and stopped crying. She said it still hurt but not as bad and she went to sleep. I laid there standing looking at her watching the pulse ox. We decided to wait, they were not going to do anything in the ER now. About an hour later she started crying again and more gas passed and then went back to sleep. 

I laid in bed. Questioning so many choices. Should we have stayed at rmh? Was I the most selfish person every for coming home? We stayed our 24 hours after (and even a couple more) and she was fine but now she is questionable. I pushed for the tube brand she had put in, was this my fault?! 

My biggest fear was a perforated intestine... that is always a risk with the type of tube the girls have. A tube change out is normally normal to us but now I was laying in fear. Had I made all the wrong choices? 

Thankfully she slept the rest of the night (I slept with an ear open and felt less then rested this morning) 

She pooped during the night... both kids did. Both kids have pooped 5 times today! That is crazy in their world unless they are sick. Now I am racking my brain to past tube changes and I think a few times they have caused them to poop a little extra after... they are messing around in the small intestine. 

But this also brings a surgery weight up... there is some discussion going on about a different tube surgery for the girls. One we know will happen at some point but we are praying for guidance and direction on timing. We are trying to figure out if now is the time to go forward with this surgery or if we push it off but there are some factors that might be pushing our hand a bit on it. I feel like it is a big decision, one with gray clarity. One I just want to make sure we are making the right choice at the right time. 

So the surgery part kicked me tonight. I was planning to go to sleep hours ago but here I sit still typing. 

This book goes on my recommended list... I know I'm not finished yet... but it has already been such a good book for the season I am in right now and I am so thankful for it!