Fundraising

If we are facebook friends you saw yesterday that the letter came in the mail from our primary insurance company denying Jilli's Special Tomato chair for when she has muscle crashes... on the grounds of it being a comfort item!?!?!?!

Its not a comfort thing, its a safety item. It is to keep her safe when her muscles are too low for even laying on the couch to be safe for her. I guess you could say its a comfort item in the fact that part of why we need it is so I can use the restroom when I am home by myself with the girls and Jilli still be safe but I argue that caregivers should be able to pee and not have to worry if their child is safe. Also being at a recline is easier on her heart during these crashes... she has a muscle disorder... the heart is a very large muscle... we need to be careful with it!  I spent an hour at a local lending closet yesterday trying to find something that would work but sadly they didn't have anything.

I posted a picture on Facebook with the denial letter. I had been warned that it was likely coming but it still sucked to hold that letter.

And since then I have been in a theological battle in my head.

My heart is broken for the broken American healthcare system. While many of us have different thoughts on how to make it better, most people agree it is broken and has been broken long before ACA ever came along. It is a mess and hurts a lot of people. That is not opinion, just fact. I see the brokenness of the system more then many and it rips me apart.

Several people posted on my picture to start a go fund me. This is not the first time people have offered to do that however we have never accepted having a go fund me set up. We have talked about this a lot in the past almost 5 years and let me explain some of the thinking we have had.

-God has always provided. Sometimes in the craziest of ways. We have one time where an unexpected bill had come in and Brent had just done sound for a wedding at church and was paid for that and the check amount for that exactly covered the unexpected bill. My parents have helped us with several of the things the girls have needed over the years and paid for Jilli's insurance deductible her first year until we got Katie Beckett. We have had bible studies at church and the giving team at church give us gift cards without us asking and amazingly at the exact moments we needed something, often before we knew of the need (like we were given a gift card to Subway the day before Jilli ended up in the hospital unexpectedly and there is a subway in our hospital). God has always provided. Its not that it has always been easy, there has been a lot of prayers and tears over money and bills but it has always worked out.

-America has a very "pull yourselves up by your bootstraps" mentality. Its not Biblical but the American church still preaches it. The thought that if you have to ago asking for help then you are weak. I have no issues asking for people to donate to a charity that helps people with special needs (infact you can see a list here) but when I am the one directly being given money I feel uneasy and asking for money that directly benefits us is very outside my comfort zone.

-I see so many people that need so much. My facebook feed is mainly special needs groups. I have a lot of interactions with kids with special needs. Additionally I have many other causes that break my heart (Syria, sex slavery, poverty, ect) and I see such great needs in those areas too. My heart breaks for the world and often that leads me to feel like there are so much bigger needs in the world then ours.

-I see too many people that have abused crowd funding so it makes me nervous. Too many people have had poor motivation to doing it or poorly used the money. I feel like in our culture at times it is become the first step instead of the last step.

-I feel like if we accepted crowd funding I wouldn't feel right with doing any "fun" things. My first thought when this letter came was to cancel our trip to a water park soon for Jilli's birthday, a trip she has been planning for a year and talks about all of the time. A trip we price hunted for and bought during a sale so the money is non refundable anyhow so cancelling would be pointless for money reasons, but this is my head, if we accept money from others for something that should only happen after all fun and extra things have been cut out of our lives, it should be an absolute last thing... but then my brain also struggles because we try hard to create fun times for the girls when they are up to it. I by no means am a cruise director mom (my children were both told to go find something to do while I wrote this post so Jilli is playing playmobil and Lydia is playing with toys, I didn't tell them what they had to do but that they needed to find themselves something to do) but we try hard to create memories and to cherish the time we have with the girls. We try to make the best out of the time we are in the hospital too. Sometimes memories come without spending anything, but many fun things have a cost to them and my brain says that all needs to be cut before accepting any money in a crowd funding way but cutting that breaks my heart.

-I feel like health insurance is supposed to be the ultimate crowd funding, we all pay in and it helps us all and when people need to crowd fund for medical things on top of that it makes me feel even more like the system is so broken.  

-We are a financial peace house and have an emergency fund that has been dipped into a lot this year with cars and teeth (I head to the dentist again in an hour for more work on my problem tooth, once again part of that ways covered in an unexpected way) so we talked about how much was in there and if taking the amount of the chair out of it is our best choice and we are still debating that.

-I don't want people to feel like we are nickle and diming them. There are many things in our world that doesn't end up covered, we have been fortunate that our church and family have been amazing, but we have always worried about doing go fund me for little things incase there was something huge later on that is a desperate need and then we have burned though people wanting to help because we were always asking.  

I had someone tell me though yesterday that people are asking to help and wanting to help and that this is something Jilli needs. This isn't a comfort thing but a safety thing. They are right. My heart is so torn over this. I don't want my pride or thoughts on life to stand in the way of something the kids need but I also want to try to make the best choices. My head and heart are really struggling with this today.

We have decided if we do go the crowd funding route that we will not go with go fund me but instead with a program that a website that sells special needs equipment has. They have where you make a "registry" and then people can go on and donate to it until it is fully funded and then they ship you the product so money never goes through our hands. Brent and I still need to decide what we are going to do. When the DME quoted us to buy it from them they said it would be $1,100, but I found it on the site with the registry for $599 (she needs the special tomato seat with floor base with head support) Thoughts on a registry vs crowd funding? Does anyone else have these debates with crowd funding that I do?

Is this how God is trying to provide this time and my pride is standing in the way?

Am I putting God in a box when I doubt that He can find ways to help us and help all those other huge things going on in the world too?

What I do really want to stress though is how thankful we are for all of you. For kind words, for encouragement and for the monetary help we have had over the years.   I want to thank you to those of you who have asked how they can help with this, who want to help Jilli get what she needs. I was busy yesterday afternoon with the girls at therapy and then the lending closet and then spending time at the hospital with a friend who is in right now so I was blown away when I opened my phone last night to read so many people offering to help that I struggled to hold back tears. I want to stress how thankful we are for everyone who has come along side us in this journey, you all mean so much to us and we are so very grateful for you and none of our head battle on this has to do with lack of love from you all. Words can never express how thankful I am for our support system.




***I do want to say that if you have had a go fund me we don't think less of you or are judging you. There are many reasons why they are needed and the best choice for someone and that is not up to me to judge, this is just how we view it in our lives***