Brown and Pink Polka Dots : fight- looking at 2017

Its a new year, that means we tend to look back at the last year.

I think the theme of last year was fight. 2017 was a hard year. I grew a lot as a person but at times it was really hard.

The fight for Jilli's wheelchair took most of the year and a lot of effort, emotion and heart ache. In the end we won by medicaid paying for it, but it was a long process. On top of it, it was not a smooth journey with the company we had to go through to order the wheelchair.

The fight for Lydia's oxygen was a several month fight that became very hard in December. They finally brought us the right concentrator yesterday however they still have not given us any more small tanks for leaving the house so Brent is going there after work to get some before the weekend. I don't think my sanity can handle this new company much longer so we are having a meeting about it next week with our team to ask for help. This year also was a fight with our other med supply company when they threatened to drop us due to us cutting into their profit margin. Thankfully we got that worked out.

The fight for people to not give up on Jillian. I felt like this was the year that I had to defend her competence the most. I spent a lot of time defending all she can do to doctors. I remember well that gut punch feeling when the ER fellow looked at me and said 4 hours after her having a seizure and her looking dazed at a wall that I might just have to deal with the fact that was all she would be able to do now, and I told him no, that I wasn't going to sell her short. We had many med students and doctors walk in her room this year and see that she uses oxygen and has a feeding tube and use that to dismiss her. There was a lot of fighting this year to not let people sell her short.

The fight with insurance. ugh is all I have to say about that!

The fight with vehicles... Brent's car is still at the car dealership because the part is not in yet (they have had his car for months), my van died this spring and we put a bunch of money into Brent's car this summer. I am thankful though for our vehicles because they are responsible for getting us to a lot of important places.

The political fight. I am a swing voter moderate but this year has been really hard for me to watch and be a part of this country. This year has been ugly! Before this year I have had opinions about government, I've agreed and disagreed with things on both sides, but this year was a different beast. This year I have really struggled with our country.

The religious fight. I grew up in a white neighborhood where all my friends attended church. I grew up in the church but the past few years I have made several close friends who haven't which is good because we are called to be in the world not a bubble, but going out past that bubble I see more of the fight and that hurts my heart because I love the church, its the bride of Christ, but I am struggling with many people in our country who call themselves religous leaders in this country. I struggle with the following of America and political parties and people confusing that with what the Bible says. I am struggling with the wolves in sheeps clothing and I feel this year they have devoured many people and led them away. The Switchfoot song "Is this the world you want" keeps playing in my head. The church is more known for hate then love, too many would rather fight for human wants then love people. I love the church but have really struggled with the American church this year.

But 2017 wasn't all doom and gloom... growth comes from the struggle if you choose to let it.

We also had some amazing times.

We have had some friendships grow deeper and we have enjoyed spending time with people we care about. At the same time it has been a year of transition and change for some other relationships and that has been hard.

We have gotten to do some amazing things. From simple trips to Target where Jilli got to learn how to use her wheelchair to trips to children's museums, going to Indianapolis with my mom and driving down Route 66 on our way back, Door County/Dells with friends and an amazing trip to Disney World that my parents took us on. We have had some amazing adventures.

We have also been blessed with Ronald McDonald House this year as a place to lay our leads when the girls are in the hospital. Its more then just a bed, its a warm meal, smiling faces, a hug when you are about to cry, people who invest in my girls, and amazing friendships. We have also been blessed with many opportunities to give back this year from making dinners, to hosting a fundraiser, to helping with their fundraising video to getting to be there when a check was presented to the house, we have loved being able to give back to this amazing place! I laugh there is a spot in our house where donations are always in transit for rmh, it seams like once the spot is cleared out by bringing stuff up there that the pile starts to build again. I am also thankful for the opportunity to teach my girls about giving back.

We have also had some great times as a family of 4 this year. From baking cookies (which Brent and Jilli did tonight) to going to parks and family game time together. Brent and Jilli like to play Disney infinity together and Jilli and I bond over Disney Vlogs. We all have also watched our fair share of Elmo this year at Lydia's request. We have had fun at the zoo and taking Jilli to zoo class. Jilli had her first ballet class. Jilli and I also tackled a few large puzzles this year. We also love cuddling up with blankets on the couch and watching a movie as a family . I love our family time!

Its also been a year where we have had some great people on our medical team. From our GI doctor who has continued with her support and caring of the girls, to our closer relationship with the special needs team. Neuromuscular has become a larger part of the picture and well as some exciting things are happening with genetics right now. Our case is going before the Nelson group at the hospital which might be a very helpful step for us. Our therapists have been amazing despite their parent company stopping all business in our county. Jilli has been moved into the MD clinic which has been helpful! We have made some good steps this year.

It was also an amazing year for watching people rally around causes that mean so much to us, from the toiletry drive in Febuary to the Run/walk in September and many things in between. We also were blown away when friends and family helped buy Jilli the chair she needs for her crashes. We are still in aww and so thankful. To the kind people who have brought us meals this year or prayed for us we are so thankful! We are thankful for everyone who comes along side us in the journey. This year has been a year for me grown in accepting help and letting down my pride and self doubt, that is still work in progress.

Thank you to everyone who joined along side us in 2017.

I'm ready for 2018

I'm hoping it is less of a fight...

but either way we are headed forward!

Here is to 2018!

Our annual New Years Celebration with steak and lobster at my parents