I’ve been planning on writing this post for a while, but with work, taking care of James on nights and weekends so that Stacy can work, doing yardwork, and trying to keep up with the normal blog posts, this got put on the backburner. Now that the yardwork is done for the season, I’ve had some extra time to devote to this post.
At the end of August, Stacy posted her usual annual birthday collage on James’ Facebook page with pictures from all of his previous birthdays.
For whatever reason, it received over 100,000 reactions, 7,000 comments, and 400 shares. We normally don’t get anywhere near that amount of reaction to his Facebook posts.
While most of the comments were positive and supportive, there were a few quite a few that left us somewhere between scratching our heads and angry. I am planning on creating a separate post to discuss some derogatory comments that made us angry, but for this post, I just want to focus on the former. Comments like these left us scratching our heads:
Do people really think we’re publicizing James’ life to make money?
After James was born and we started to learn about all of his medical issues, we were constantly being bombarded with questions from friends and family about his condition, how he was doing, what the doctors were saying, etc. Stacy started his Facebook page as a way to keep everyone updated instead of having to individually tell a couple of dozen people the same thing. We had no idea fourteen years ago that his page would attract such a following. He currently has 13,000 fans from around the world, and while most of them are supportive, there are a few that seem to think we’re using James to make money.
We are not—and never have—used James as a way to make money. Stacy and I were smart with our money when we first got married and saved as much as we could. Our plan was to start a family, move out of our small condo and buy a house. Unfortunately, the starting a family part sort of derailed the rest of those plans. After James was born and we learned about all his medical issues, we knew that Stacy would probably never be going back to work, and instead would become James’ full-time caregiver. We were thankful that we had saved that money before James was born because it really helped us get by when our income was cut in half with Stacy not working.
I don’t remember exactly when, but it was sometime in the first couple of years after James was born, we decided to set up a separate savings account for his medical expenses. My health insurance is pretty good, but it doesn’t cover everything, and there were things we wanted to buy for James to make his life—and ours—easier. Any money that James received for his birthdays, Christmas, Easter, or whatever, went into that savings account. We refer to that account as “James’ medical fund”. We only use money in that account for medical related items for James: prescriptions at the beginning of the year before we meet our deductible; a second pulse ox, because home health only provides us with one; a portable suction machine because the one that home health provided was big and bulky; two tabletop suction machines because home health only provided us with a single portable suction machine; syringes when our health insurance company decided to drastically cut back on the amount of syringes they would cover each month; diapers because insurance doesn’t pay for them; and the list goes on. I keep track of all of our expenses in Quicken and as of November 23rd, we have spent $79,225.49 out of pocket on medical related expenses for James since he was born.
And in case you are wondering, no we have not received that much in donations. Not even close. We have never asked anybody for any sort of financial assistance for James, although we have had a few people offer. In most cases, we told them ‘no thank you’ and that was the end of the conversation. There have, however, been a few people who just wouldn’t take no for an answer, and we reluctantly accepted. After the second or third of those frustrating conversations, I decided to add a Donate button to the top of this blog so that people could donate to “James’ medical fund” if they wanted to. I have changed that Donate button to “Help Us Buy a Van”, which I will explain below.
There have only been three times that I can recall that we actually asked for money. The first time was in early 2010 when James was diagnosed with infantile spasms, and our insurance company didn’t want to pay $74,000 for the medication to treat them. We didn’t have that kind of money to pay out of pocket for a medication that James desperately needed so we asked for help. Fortunately, our insurance company did approve it a few days later after they found it at a different pharmacy at a price that they were willing to pay.
The second time we asked for help financially was when we needed to purchase our first wheelchair accessible van. Between late 2012 and early 2014 we had a few small, and one large fundraiser to raise money to put towards a van. Thanks to the generosity of countless donors, we were able to purchase a 2014 Dodge Grand Caravan SXT with the BraunAbility conversion brand new for $54,217.09. That’s with tax, title, and all the other fees included.
Two years ago, I had a bit of a wakeup call when my eleven-year-old car suffered a catastrophic engine issue that was going to cost almost as much to fix as the car was worth. I debated spending the $4,000 to fix it and hope that I could get another couple of years out of it, or if it made more sense to buy something newer that would last well into the next decade. As much as I hated the thought of having a car payment, the latter option seemed like the more logical way to go. Which brings us to time number three that we’re asking for money.
Being stuck in the situation of having to replace my car two years ago really sucked, and it made me realize that at some point we are going to need to replace our wheelchair accessible van, which is now ten years old. When I started looking at what a new van was going to cost, to say that I was shocked is an understatement. Since Chrysler stopped making the Dodge Grand Caravan in 2020, the most popular options for wheelchair accessible vans are the Chrysler Pacifica, Chrysler Voyager, Honda Odyssey, and Toyota Sienna.
The two biggest conversion companies of wheelchair accessible vans are BraunAbility and Vantage Mobility (VMI). To give you an idea of how expensive new wheelchair accessible vans are, I am including BraunAbility’s MSRP prices below. VMI does not list pricing on their website so I can’t compare pricing between the two, although I would expect them to be somewhat similar. The range in prices for each model are for the least expensive and most expensive option for each model. Note that these prices are BraunAbility’s suggested price, and do not include tax, title, or other fees.
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- Chrysler Voyager: $61,602 to $78,437
- Chrysler Pacifica: $64,884 to $88,609
- Honda Odyssey: $79,765 to $88,825
- Toyota Sienna: $81,035 to $98,410
Because of the issues we’ve had with the Caravan—two sets of struts, transmission leak, rear air conditioning that’s failed twice, a radio that died, and a rear camera that is dying a slow death—we are extremely hesitant on buying another Chrysler van. Our van doesn’t even have 90,000 miles on it yet.
The prices listed above are for brand new vans, which are currently way out of our price range, so I have been looking to see what is available used. Looking at something one to four years old, with not a lot of miles on it, the prices are all over the board. Here are a few examples:
That’s just a handful of examples of what’s currently available for used wheelchair accessible vans. As you can see, even used vans can be pretty pricey. What I can’t figure out from the listings above is how are a Dodge Grand Caravan and a Chrysler Pacifica, both with over 50,000 miles on them, more expensive than a Honda Odyssey with just over 7,000 miles. That doesn’t make sense to me since the Odyssey has always been more expensive than the Caravan and Pacifica.
Anyway, the point I am trying to make here is regardless of if we buy new or used, we’re looking at over $60,000. When you factor in taxes, title, and other fees, it will be closer to $70,000 to replace our van. Unfortunately, we can’t use websites like Kelley Blue Book to get an idea of what we will get for a trade-in on our current van, but I’m hoping we can get at least $10,000 for it, maybe more after looking at the current used wheelchair accessible van prices.
I ran some numbers through a loan calculator on Calculator.net, and our car payment on a van will be $762.79. This calculation is based off of a $65,000 purchase price, a loan at 6.25% interest for six years, a down payment of $15,000 (thanks to our generous donors), and assumes we’ll get $10,000 for our van.
There is no way that we can afford that! I was actually joking with Stacy about a month ago that maybe I should consider selling a kidney to raise some money for the van. According to an article from “The Medical Futurist”, kidneys cost about $262,000 each. The article also states that “you are not allowed to sell your organs for transportation purposes in the US”. Even if it was legal to do so, I don’t think I would go to that length to buy a van.
Going back to the original reason for me writing this post, we are not publicizing our disabled son in order to make money. The only times we ask for help financially is when there are rather large medical related expenses, like that infantile spasm drug that insurance didn’t want to pay for at first, or a wheelchair accessible van which costs about twice as much as a van without the modifications.
Stacy and I are two hard working people trying to give James the best life that he can possibly have, and because James needs around-the-clock care, we can’t both work full-time jobs. I hold a full-time job which pays decent, but not the best. I normally work Monday through Friday from 9 am to 5:30 pm, but I am on call 24/7/365. I would work overtime if I could, but my employer doesn’t allow it. Stacy works multiple part-time jobs during the day when James is in school, and on nights and weekends when I am home to take care of him. There are some days that Stacy and I barely see each other, only having enough time for a hi, a bye, and a kiss.
Do I wish that Stacy and I had more time to spend together? Of course I do, but we’re not going to exploit our disabled child to make money so that we don’t have to work so much. That’s not who we are. We’re just asking for a little bit of help with large expenses, like a wheelchair accessible van, that most people are fortunate enough to not have to deal with. That is all that we are doing.
Hopefully I have made my point. Thank you for taking the time to read this. And thank you to everyone who has donated to our van fundraiser so far. In late September we even received a donation from someone in Poland. How cool is that! If you are interested in helping us out, our fundraiser can be found here:
https://helphopelive.org/campaign/21730/
We are also selling shirts, where a certain percentage of each shirt sold gets funneled back into the above fundraiser. If you are interested in buying a shirt, you can do so here:
https://www.bonfire.com/rollin-for-james/
