Not a normal me post

I don't normally write anything political... like ever! I have joked on my facebook about silly things Jilli said during this political election. She likes pink better then red or blue in case anyone was wondering, but please take the time to read these words, they are not bashing, just a mother's heart.

Lets start off with some background... I am a white middle class girl who grew up in the suburbs between Chicago and Milwaukee. In my grade in elementary school there where 2 kids that were not white and one of them was adopted by a white family. My mom has always worked with people with disabilities and frequently would bring us to events and work because she saw value in us getting to know people outside our little white perfect lawn bubble. I am far from what you consider to be a minority.

As I got older my bubble widened. I have had the privileged to go on mission trips to 3rd world countries and while I was only there for a week at a time impacting others it impacted my world view. America we got it good! In college we had to do a lot of placements. One of mine was working with Early Head Start in Beloit. That was an eye opener. I had a placement in Milwaukee in the exact neighborhood all of the violence has been going on in. I had 4 year old explain to me why they don't like police. Once again this shaped my world veiw, but at the end of the day I still drove back to my house where there is food in the pantry and I am safe. I only glimpsed into this other "world' but I didn't live in it. I was able to drive away and while it left an impact on my heart I have no idea what it is truly like to live in either of those situations.

We are also a very independent family. We get our news from everywhere. In fact sometimes we joke about what channel is it going to be tonight because we don't want info from just one source. Brent listens to political pod casts to and from work every day (its and hour drive each way) and we both read news from multiple places. We do our job to be educated. I voted republican in the primary and not republican in the final election. Neither Brent or I vote based entirely on a single issue.

What I do know, is yesterday for the first time in my life I felt scared to live in this country. And I wouldn't be writing about it (I HATE arguing politics) but I have seen so many people post on facebook in the past 24hours that I have no right to be scared and that is not fair...

Is the president elect someone who has openly mocked people like your children? My kids have a muscle disorder. It is not CP but very similar in many ways. How would you feel if someone in power made fun of your kids? I don't know him personally but public actions speak loudly. If you are willing to do that in front of people, what do you do when no one is watching?

But while being made fun of is hurtful, I can walk away from it. We have been told some pretty hurtful things in the past almost 4 years and I have learned to just walk away. However what scares the crap out of me is on the lines of healthcare. I will full admit that not all parts of the Affordable Care Act are amazing (honestly show me one thing that has passed through congress recently that is amazing) however there are parts of it that are really important to a family like ours. But what is really scary is his plans for medicaid. If you don't know Jilli is on medicaid. It pays for what is left over from insurance. Let me give you some numbers:

• Every MONTH our med supply company bills our insurance $3,928.70. This is for oxygen, feeding pump supplies and formula. Those things are all needed to LIVE. This is just the cost for Jillian.
• Every 3 months we go in for a tube change out. Those cost $4,732 each
• Physical Therapy each month costs $720
• Jillian's meds from one pharmacy (she uses 3 different ones for different meds) so far this year has billed insurance $11,646.45 
• None of this includes the cost of doctor visits, surgeries, ER, or hospital time. 

We are lucky. My husband works for a fortune 500 company. We have health insurance. We pay high premiums, I get it. But we still need state as a secondary to help pick up the THOUSANDS of dollars that are not covered each year. And still then WE pay hundreds of dollars a month on things neither of them pay for. Jillian's CoQ10 is $60 a month. She just got braces for her legs, and needed all new special shoes cause the ones at Walmart and Target didn't work. None of her vitamins or probiotics are covered by insurance.
When we first got married the ACA was not in place. We were young college students and figured we would just buy insurance on our own since neither of us had a job that offered it. We bought insurance only to be told they would pay for NOTHING for me because of my pre existing conditions of asthma and ovarian cysts. Thats all I had diagnosed at that time. They point blank told me that I could pay them hundreds of dollars per month but that they would never pay anything out. Then ACA came into effect and I was able to go back onto my parent's healthcare which was amazing because before that I was having to get my prescription meds from over seas because it was either that or put food on the table. The ACA massively effected my life for the better.
But what scares me about the ACA being repealed is my kids have a lot bigger pre existing conditions then asthma. What happens when they age out of Brent's insurance?
You are probably going to tell me, well then they will just have medicaid, but here is the problem... I have read Mr. Trumps plan and if you really dive into it, it cuts the funding for it and basically de funds it... you can't pay bills without money. People keep posting online that there is so much corruption in medicaid... however the people that are posting that have never applied for it. Let me tell you the process. First I get sent a really long packet where I have to list everything my child can't do. It sucks. Honestly I would rather be sucker punched. Then a person from the state comes over for a home visit to see the child for themselves. Then the packet you fill out and all of your child's medical record goes to the state where they make the ruling one way or another. This process takes about 3 months and in the end you get a letter and if you child qualifies the letter states that your child has been deemed permanently disabled by the state and while you celebrate the help in paying bills you cry on the inside. Then we get to do this again every year. Every June we go through this process. There are a lot of checks and balances. I see a lot of families with kids with special needs and have yet to meet one that I felt was playing the system. Most are like us and drag their feet to apply until they are drowning in bills (We are still paying medical bills that are well over a year old)
Without medicaid we don't make house payments. I have also heard on facebook in the last 24 hours that no one would touch medicaid for kids like mine. Here is why I don't have as much hope in that as others... when things like this go through law makers don't have the faces of my kids in their mind. They don't know how funny Jilli is or how when Lydia sees me in the morning she licks my face because she is so happy. They see money. They see heads of insurance companies that are not in the insurance business to help others, they are in it to make money and kids like mine don't make them money. They are not going to take kids like mine unless they have to. Thats why most people don't like the ACA right... because you have to pay more, while you might not be outright saying it, really you are saying you don't want everyone included to get insurance because you don't want to pay more, thus saying you don't want kids like mine to have insurance. While I know most of you don't think about it down to that level that is the reality of the situation.
So what do I say to my girls when I am teaching them history in a few year? How do I explain to them that there is a group of people in this country that don't think they deserve healthcare that keeps them alive? Because med supply stops delivering if you have an outstanding balance, if there is no one to help pay that bill my kid does not get oxygen. And before you say no one would do that to my kid, go read comments on some news stories about healthcare... I have read plenty of comments where people say kids like mine should die so they don't have to pay. Heck, I post an article not too long ago about a politician who said the same thing. Have you ever read a comment that said someone would rather see your kid dead?
So please stop telling me that I have no right to be scared. As an American I have every right to be scared. And before you through some unBiblical doctrine at me, remember how the Israelites wanted a king and God gave it to them, but look at what that cost them. Remember God's people have wondered in the desert for 40 years before. God works everything together for the good of those who love Him, but that is not the same as the American definition of good. Good might not be tomorrow. We might have to go through some darkness to come to good. Most Americans are not Christians and you can not expect no Christians to act like Christians and heck may Christians don't act anything like the Bible calls them to (I get we are all sinners and I am far from perfect but look at our nations history, many KKK members claim to be Christians right...)
Am I rooting against Mr. Trump... no, not at all. I am rooting that he is a diamond in a yucky rock. Maybe he will help things and then I will cheer for him. Man I really hope he proves me wrong and for that I will celebrate because I root for America.
But please stop saying those of us so are scared right now are playing victim. Cause I bet you didn't have a day like mine yesterday where you woke up and felt so scared and then spent the day being contacted by other special needs families, ones I have NEVER talked politics with before and don't know my views on things, to many mothers crying scared, some scared more then I since they don't have insurance through an employer. These are moms who literally make life and death choices for their kids daily. So Church, what are you doing to love these people who are so scared right now? Cause it takes a lot for me to write a post like this, but how in the world are you loving scared people right now cause your facebook memes telling them not to be scared is just pissing them off and pushing them away from God.


ps: I will have civil conversations about this however I will not get into political battle with people. I at no time did I attacked Mr. Trump in this, infact and I said I am hoping he does amazing things to help others, but if you attack me your comment will be deleted.