by When it comes to AJ’s expenses, insurance typically picks up the majority of our bills. The problem is that “typically” and “majority” aren’t inclusive words, and sometimes things still get expensive. Sometimes we’re even forced to make a decision to pay for things out of pocket or take the risk of going without. Sometimes the sad truth is that taking those risks can have an impact on the quality or longevity of our kid’s life. Our practice has always been to forge forward in faith that things will work themselves out.
Most times they do.
Sometimes though, things go south. Appeals are denied, things have to be purchased out of pocket, and even unexpected hospital stays happen…
We’ve had some pretty big battles through the years, and we just wrapped up another one right before AJ got sick in mid December as we battled appeals trying to get insurance to cover what was needed.
The AMAZING news is that thanks to a lot of hard work and dedication from some amazing doctors, advocates, and professionals from both sides (plus the middle) of the country, we were able to get things covered and a plan for going forward as of December.
The bad news is that the thousands we went in debt the months prior won’t be getting paid back to us. There’s no more appeals to file, no assistance programs, no drug manufacturer benefits, no grants, and no other options to “make it go away”.
So we are taking steps to sell things, get different vehicle(s) if possible, and tapping into our home equity. We’re pushing where we can. So far the only thing we’re keeping off the table is changing careers (risking losing FMLA) and getting rid of AJs camper. We also have to maintain a way to move the camper so it’s likely Aaron’s truck will be staying. Outside of that, any ideas for improving our finances are currently on the table.
I’ve been asked a few times by those close to us and know what we’ve been up against why we haven’t asked for more help or done any fundraisers in recent years. My answer has been that everyone is struggling these days. Other families are in more precarious situations than we are, and I also feel like our community has already done so much, especially when AJ was first born. He’s stable (most of the time anyway) and we’re honestly pretty blessed.
But if I’m being truly honest, I haven’t asked for help or done any fundraising because my ego still does its best to convince me that asking for help is admitting failure. Most days that’s just a financial failure, but on my worst days it translates to feeling like I’ve failed as a parent or even a human as a whole. I know better, truly, and am aware that it does take a village, and that our medical system really isn’t set up to allow for much success, but that doesn’t make it any easier to quiet that voice.
After some discussion (and maybe a little nagging from friends) as a family we decided to do something different for a fundraiser. We didn’t want to just ask for donations, our time may be limited, but it’s always been important for us to “share” AJs joy with the world, and if we could find a way to do that and raise some funds at the same time, it just made sense.
So here’s the announcement that AJ will be creating artwork to help raise funds for those uncovered expenses. All of these pieces are hand painted by him, while jamming out to his favorite tunes and finding joy in covering himself and all his helpers in paint during the process. He paints over the art/text so the quotes and images are revealed when we remove the vinyl after he’s done painting, so there’s no risk that the design will peel or fall off, and AJ also helps seal the canvases afterwards for good measure. If you look closely you’ll be able to spot fingerprints and palm prints in the texture of the paint. Each piece will come with a photo card that explains that the art was done by AJ and that it helps pay for medical expenses with a little info about him.
AJ’s health will always come first and it’s important to us that this is fun for him, so most pieces will be pre-made and we’ll share when they’re ready to go, but we will take some custom requests as well, so if you have a size, quote or design you’ve always wanted or a specific color scheme in mind – let us know! Just know that there may be a few weeks for those custom requests. We want to make sure that what we are sharing is his joy, and as all my creator friends know, there’s very little joy in being forced to create when you’re not in the mood…
Shortly we’ll post the canvases we have available so far and more details on how to donate/claim them or request something custom. In the meantime, here’s some photos showing how much AJ loves this “work” of his and an idea of what kind of art will be available.
As always, thank you all for your love, prayers, and support!
