Social Media

I was listening to a podcast the other day and one of the people on it was talking about how they feel stuck sometimes about what big world events to post about on social media and it got me thinking about what I think about before I post anything. This is just what I do, it might not work for you, but for me this is where I have been able to draw lines.

1. Would I say something about this subject if politics was not involved? There are many things that I care about that political affiliation doesn't play into... loving one another, healthcare so all people have a chance to participate in life, disability rights, that no person should be sold.... I have had feelings about these topics for a long time and honestly just in my lifetime which political party stands for which of those things has changed... those are things I have a strong opinion about despite which side of the isle they are on.

2. Is this something I even feel should be political? I have really struggled the last couple of years with how many things have become political that have not been before. Loving people should not be political... so I am more likely to post about something if it has just become political recently that was not before that I don't feel should be a political statement... like putting children in cages is wrong, that wasn't a political statement long ago, for some horrible reason it is now... I don't think that should be a political statement.

3. Read a lot first. I read several articles about something before I post about it, and many times will wait a little bit so I can get several sources. I look for places that are not fueling fires but are seeking to inform or love. I look at the tone of a piece... does it really seek to portray facts AND does it seek to love people... there are plenty of stories out there that might tell some facts but their main goal is to blame the other side... that doesn't help in loving.

4. Have someone you are accountable to on line. My husband and I post very different things online... he is much more of a political meme person then I am but he is also a much much more informed person on politics then I am, and a well rounded person on politics (Brent voted McCain over Obama and Kasich in the primary... people like to call him a crazy liberal right now because he disagrees with a lot of the things Trump is doing and stands for but in many areas he is a conservative and someone who learns all about a person before voting for them, he very much votes person not party). Brent and I have an agreement that we will privately tell each other if we have an issue with what the other person posts... this doesn't mean we are policing each others social media but we know each other well enough to know each others heart on an issue and if we feel the other person didn't portray their heart well we will say something. We need accountability in our lives. Find someone who doesn't hold all of the same views as you to keep you accountable.

5. Reread your post before posting it and if it is something with emotion behind it, write it, reread it, wait a few minutes, reread it again and then think about it. This might be my people pleasing nature coming out but any time I post anything that has to do about world events my brain get nervous, I want people to like me and this week saying children shouldn't be in cages gets you unliked by some people, but sometimes you have to stand up for what you believe it, however that doesn't mean you need to be a jerk while doing it... you can stand up for what you believe in without trying to hurt other people.

So those are the things I do. I am by no means perfect in this area. Its something I think about though because if we don't then we are just going by emotion and a lot of people can end up hurt that way.  

NIH, fun days and the upcomming week

I saw a meme the other day that said something along the line of that God is working on 1,000s of things in your life at any time but that we rarely have eyes open enough to notice 2 of the things He is doing.

That really resonated with me as I have seen some big things this week however I have likely missed tons more.

We live close enough to Chicago that it is a day trip and growing up we went to the city many times, but one of my favorite things to do in the city has been going to the American Girl store. I remember going a few times when I was younger and how in aww of it I always was. Since I found out Jilli was a girl going to the American Girl store with her has been a dream of mine. This year AG released their girl of the year... an astronaut! Jilli wants to be an astronaut when she grows up (she wants to go to space on Thursdays...) and her uncle Seth helped to work on the new fuel gauge for NASA and she adores her uncle so anything space is really cool in her world. Since we first saw what the girl of the year was all about Jilli has been very interested in it. She has two of the Target branded 18in dolls that she LOVES and takes very good care of and so we were talking about how the girl of the year doll this year might be the perfect big girl doll for her.  My mom and I originally were going to take the girls up to Door County this weekend but our plans changed so we had an open day on Friday so we decided that it was the perfect day to go.

Jillian loves the Eloise movies... she watches them while we are at rmh (we need to order rmh more of them, we keep watching the same couple over and over and over lol) so her eyes got huge as we came into Chicago. She was excited to be in the city like Eloise. We didn't tell her where we were going until we parked the car and then she got really excited to find out we were going to the American Girl store!

We wondered around the store for a few hours. The girls LOVED it. Lydia wanted to play with every doll that was on display and didn't understand why she couldn't. Lydia got a Bitty Baby from my dad at Christmas (my dad bought me my special doll for the Christmas when I was one and he did the same for both of the girls... we just happened to find a good deal last year at Costco on a Bitty Baby so that is the doll he decided to get for Lydia... she calls it Bumpa Baby) so she brought her doll with. Lydi loved looking at every "pet" they had for the dolls and fell is love with the stuffed puppy named Grace. Jilli was so excited to see all the space stuff for the doll of the year... but the look on her face when mom and I told her that she could have a doll of the year was priceless. Jilli didn't ask for anything in the store... she pointed out things she thought were cool but she never asked for a thing... she was just so grateful to be there. She LOVES her doll and brought it with her to church today. After AG mom and I got some lunch at a cafe at Watertower place, walked down to the Disney Store and the girls loved to push the buttons for the annomatronics and then we talked back to Watertower place (during our walk we got to see a street "preacher" and picketers yelling at people that they were going to hell and they deserved it... this was NOT the gospel message... my head and heart have so many thoughts on this but thats a different subject). We looked around at Macy's and then headed home.

Friday night Brent and I went out with Jamie and Jason for Jamie's birthday... its rare the 4 of us go out any more but we had so much fun. I truly value them in our lives... we joked that we are getting old lol... the 4 of us are known for our multi part date nights... on time we went to one restaurant for dinner... one for drinks... one for dessert and then to a movie... on Friday we went to dinner and then to BuyBuy Baby and then for ice cream lol.

When we got home I was tired. Brent grabbed the mail and handed me a letter that had the return address of Health and Human Services... you open letters from them quickly...

It was on NIH letterhead and I started to read... it was addressed to our special needs doctor letting him know that we have made it past the review round of the application process for NIH and we passed that round and are moving forward to the next step that is consent and that we would be getting a call soon!!!! AAAHHHHAHAHAHA! I read the letter three times over. My mom was asking what I was reading (I am sure I had an odd look on my face) and Brent walked by and I handed him the letter and he read it and then asked if I was getting out of the letter what he was getting out of the letter and then he came over and gave me a big hug. Tears were in my eyes and I just kept praying thank you. I then sat on the edge of the couch with so many emotions. My stomach felt weird... I felt like I was going to cry and I was very cold all at once. I just sat in aww. I really could barely talk about it or say anything... I couldn't post it to Facebook... I just looked at my phone blankly for a while... I didn't know what to do.

Friday was one crazy day!!!!

The letter is dated Lydia's birthday... one special day! But that also means that this decision was already made before I yelled at God on Monday... He already knew the letter was coming... He already had the plan rolling... He had this. As I stood in church this morning my mind was thinking about how my different feelings I have about this and how this feels much different then if the letter said the opposite however either way God is good. I know that feels easier to say in my shoes today when something good is going on however I have had plenty of days where the opposite is true so I understand both feelings really well and I think sometimes it is really healthy to remember in the times of joy how God is still good in disappointments and in disappointments that God is still good in the joy... it came be easy to get swept up in the emotion of now but it is good to remember the opposite too because it gives you hope in the rough times and it reminds you to be thankful in all times. God's goodness doesn't rest in our circumstances.

My head is still swirling. It still doesn't really feel real and I think until we have the dates and are actually headed there that I will likely keep my head and heart a little reserved. Our next step is to wait to hear from NIH about what we need to do next. I am hoping they call us soon! Prayers that they call at a time that works well because we are headed into a busy week!

Yesterday Brent worked on finishing demoing the bathroom. It is cleared out and ready to start to be rebuilt again next Saturday. We are hopeful a few people will be able to help Brent in that next weekend so a lot can get accomplished of getting that finished. Next weekend we are also serving dinner at RMH!

Since Brent was finishing demo work we decided it was best for the girls to get out of the house so mom and I took the girls to the Rotary gardens. We had never been before and Jilli LOVED it. She loves gardens and I love that she is able to enjoy the calm things in life. That she can find joy in wondering around the garden.

This upcoming week is going to be crazy. Both girls have MD clinic (neuromuscular, pulm, rehab), Lydia is having her muscle biopsy surgery and will be in the hospital at least overnight, Jilli is having an echo/ekg done and both girls have cardiology. Its going to be an adventure of a week but I think we are as ready as we can be!

This past week our family also went though a transition... my little brother moved to Colorado to work at the Ronald McDonald House! He has been working at moving out to CO for a few years as his girl friend lives out there but he has been job hunting and finally the perfect job came. We are so excited for him... and a little sad for us. Many people don't know all the stuff Seth has done over the past few years to help with the girls from coming to dentist appointments with me to entertain the girls to driving down to Shriners with me to help navigate traffic. He has helped a lot and we will really miss having him around but we know this is the right move for him and we are excited for all the families he is able to help because we understand how important the RMH staff is. Good luck Seth, we love you!!!

of th efun of catching two children smiling and looking the same direction... one can not have it all lol

When it feels like God is silent

This year has just felt weird to me God relationship wise. I have wrestled with things I haven't before but thats ok, that shows growth...

For the majority of this year I have either felt like God has been silent or on the flip side I felt like God was looking for the hard way to do things. The weird thing is for me that it is not the big things that cause me to have those feelings at times... I am a details person... so it was when little things didn't fall in place the way I thought they should... not major things, mainly things I had prayed for other people and they didn't happen how I thought they should and then I would be frustrated (which is rather self centered but we are calling it straight here).

The month of May for us was an odd month... it was uncomfortably calm... I am a person who schedules down time... I have always been a GO person and while that looks very different these days then it once did I am use to a lot of things going on. At one point Brent looked at me and said that it was unnerving how calm things where... its not that we were looking to fill our calendar its just not the norm for us... But it was what we needed.

I feel like I personally had a lot of growth in me in the month... I spent a lot of time listening to podcasts and reading... I spent time having deep conversations with people... I feel like I grew as a person that month but I feel like if it had been as busy as normal that I wouldn't have had the time to grow like that... like God held the lessons for the right time when He knew I could work through stuff. He knew in the midst of crazy that I couldn't work through things but He had the perfect timing all lined up so while it was uncomfortable before hand when I felt like I couldn't see how God was moving in my life, I am thankful that He had the perfect timing... like a good parent strives for, with homeschooling I think about this more, how I want to give my kids the right lessons, not the ones that are too easy or too hard... the right lessons at the right time and God is perfect at that.

Tonight I had a meeting that the kids were not with me for (strange!) and after the meeting I went shopping at a specialty grocery store because I was looking for something I knew I couldn't find at our Target so I was wondering a grocery store without kids... yes it was like a mini vacation lol... I probably looked very lost as I wondered the isles but thats ok. On the way home I was listening to the That Sounds Fun podcast... the episode with Hilary Yancy... I don't want to give anything away from the episode because there is some amazing story telling going on there and I want you to hear it, but at one point during the interview Hilary said that her prayer life we God has changed and she has become sassier with God and I laughed because logically I know that God can handle sass... but as she talked I started to cry and I turned it off and yelled at God that I don't want to give Him to NIH trip because I don't want to be disappointed with God... not that I don't think God will do what is best for us... but that I felt like if I gave this to Him and we got a denial letter that I would then be mad at God instead of NIH (I know me, I know my brain and I know how I have handled things before and I know for the that is a real fear) and I felt like I couldn't bare anymore disappointment that I put on God... not that God can't handle me feeling disappointed, He completely can, but I didn't feel like I could handle it.... its like when you love someone so much that you just don't want them to let you down, you don't want to feel disappointed by them.

A couple of months ago I was at a baby dedication for one of my favorite babies but being there for his dedication meant that I got to be there for his momma leading worship and she is one of my favorite worship leaders in the world... I had an entire season of my life where I was blessed with her frequently leading worship in my life (she, Brent and I were a team in worship things) and while we still do life together frequently its not often that she leads worship in my life anymore, so for me it was a big gift for my heart to be in that room. She started singing the song King of My Heart which I had not heard before and the tears filled me eye... the chorus is singing about how good God is and just the fact that between this friend and I there were 4 children in that room is a huge testament to how good God is... as I looked around at these babies it just hit me all of the promises that God has fulfilled in my life... but then the bridge goes "Your never gonna let, never gonna let me down"... those words did not feel as easy to sing...

Tonight as I drove home crying and yelled at God that trusting Him with NIH was hard my head went to playing that bridge over and over like my brain was longing so hard to believe it but it wasn't there yet... and that is ok... there is a longing to be there, but I am not there yet.

Then my head started thinking about this post... I write a lot of blogs in my head... many days before I actually type them... some never leave my head... but this one I felt like I needed to get out for me... I need to look back at this again someday... I have debated a lot back and forth lately if I wanted to split thing blog in two... one for our medical journey and one for the rambles of my head... I see in stats that my head rambles get lower views (thats fine, they are often more like a journal entry that I am letting the world see) and I know when I post anything with the slightest hint of anything that could be possibly taken as political (man there are so many things right now that I never thought me saying _________ would be a political statement) that some people stop reading... so I have been wrestling with that but I have come to the decision that I am one me and all of this is part of our journey... this post effects our kids medical journey, it might not be laying out how an appointment went but it shows a fuller picture of us... my girls medical needs are not segregated into one part of our lives... they effect everything and many of the things I am learning and places my heart is growing are related to that... I'm me and this is my blog and people can chose to come and go when they wish but all of the parts of our lives interrelate... so if me writing sometimes about things that are not directly health related bugs someone, thats on them and not me because all I can do is tell my story because thats the story I have and I believe there is so much power in our stories! 

So there is some of my heart for tonight... my heart has been struggling with giving health stuff up to God because I struggle with Him disappointing me in the details

My cute girl!!!

Our baby is 2!

This seams so crazy that our baby is 2! But at the same time I feel like she has always been a part of our family.

We took a long weekend to celebrate Lydia... started on Thursday with doing her 2yr pictures (which she was a stinker for!) and then we went to Great Wolf Lodge (we had been there for Jilli's birthday and there was a fire so they gave us a thing for a very discounted room to make up for that). Our drive up was a little long with just me and the kids but we made it there are got checked in. Next GWL is an outlet mall so the kids and I walked over and shopped some at the Disney outlet. Then Brent and my parents made it up and we headed to the water park! Lydia really struggled regulating her body at the water park... her limbs turned purple very quickly and she started full body shaking. We upped her oxygen and held her, she looked very scared but eventually her body evened out. Jilli loved the water like normal. Then we headed up for the clock tower show and bedtime story... that little show is one of the things that keeps us coming back to GWL, because our kids love it SO much! We then played a little in the arcade and then headed to bed. We woke up in the morning and got breakfast and then headed back to the pool. Lydia did much better in the pool the second day and enjoyed the one water slide. We then packed up the room and checked out. Before heading out we stopped at a couple of other stores at the outlet mall with everyone and got lunch and then hit the road.

Friday night we celebrated Lydia's birthday at the Dream Playground which is an inclusive playground. It was a very low key celebration, we just posted on Facebook that we would be playing at the park and friends came to join us. We had a lot of fun!

Yesterday morning we gave Lydia her gift from us, a drum set.... yes we are crazy lol! But this girl LOVES music. She was so excited. We had a grad party for my cousin yesterday and then we ran some errands (being gone for over a week means you need some food in the house lol) and we ran into friends at Target so we all went out to dinner together (I LOVE when things like that happen, the unexpected fun times with people you care about).

Today is fathers day and we celebrated Lydia's birthday with Bren'ts parents and my extended family. It was a busy day but a fun day.

Birthdays at our house really mean something. I think our perspective on life is different since the girls were born... I have always been a big birthday person but my kids birthday feel like accomplishments for us all.

So for Lydia's 2nd birthday here are some things about her:

Favorite shows:
-Disney Sing Along Songs (Disneyland, Camping and Beach party)
-Elmo
-Youtube playlists of hospital songs
-Videos of her and Jilli

Favorite Toys:
-baby dolls
-spoons and bowls
-musical instruments
-whatever Jilli is playing with

Favorite Characters:
-Elmo
-Minnie Mouse
-Peppa Pig

Favorite Books:
-Peekaboo
-Look and Finds
-Elmo

Her Friends:
-Emerson and Oliver 
-Laura
-Nate
-Gabe
-Jessie

Other things she loves:
-Mimi (passy)
-chewing on syringes
-frozen teethers
-finding what she can get into
-learning (she knows her letter and how to count to 10 if you say 1)
-cuddling



In other life updates Lydia did have her EGD. They said things look pretty good and we are going to change some meds (one due to insurance and other other to help with bloating). They were able to do the echo and they found fluid around her heart, we meet with the doctor in a few weeks but it sounds like the plan for now is to watch it. I am very thankful for both out cardiologist and GI doctor as they are both great doctors and I trust them a lot. We met with a surgeon for the pre op for Lydia's biopsy, which is set for June 27. Since they need to take so much  muscle is has been deiced to do this surgery inpatient to watch for bleeding and manage pain. I think that is the best pain. Both girls also saw dental. Their teeth are still looking great. Lydia had some mineral build up on her teeth but the dentist was able to get it off... she does better at her dentist appointments then she does when she comes to mine.

Coloring

Jilli still loves playing games

watching a hospital song parody

Lydia decided she was not ready yet for a big girl seat... so with toys r us going out we got a Fit2 floor model at an amazing price and she has 5in to grow in it, I'll review it soon

Thank you to everyone who partnered with us when the Mattel store was closing to buy things for the magic room and NICU bags at RMH!

I LOVE this pic

WE spent a lot of time in the garden this time at RMH, we went for a walk in the wagon in the garden almost every day and some days multiple times a day!

taking Nate out to celebrate his 5th grade graduation

Jilli has a list of 7 jobs she wants when she grows up and one of them is to be a manager at RMH so Laura let her sit at her desk and be a manager... what we are all even more excited about is that my brother has accepted a position with RMH in Denver to work as doing the job our house managers do at RMH. We are so excited for him

Jilli autographing the magazine we were in

bubble on the bridge

Lydia and Oliver

WE didn't ride on the ducks... but for some reason it was parked outside of GWL

This was one of the sweetest gifts ever... Lydia LOVES biting water bottles... and Nate's water bottle has been her favorite since she was a baby. Due to Nate's medical needs he needs to always be drinking water so her carries a water bottle around... well he asked his parents to take him shopping for a new water bottle so he could gift Lydia his prized water bottle. Such a sweet thing for a 10yr old to do!

Lydia needed a neb so Jilli gave her cuddles to keep her calm... this is sisterly love! Also during her neb Pandora started playing "Its your breath in my lungs to I'll pour out your praise"... well played Pandora... well played

Then Jilli read her a book